Actually, I should say that if it's December, it must be raining! December has been so wet, I'm surprised that some entrepreneur hasn't started an ark-building course.
It's been very difficult for me. I've had to choose between going out in the pouring rain and risking getting drenched and developing a chest infection (in addition to the nasty cold I've had all month), plus the possibility of getting shoved in front of traffic by some imbecile who isn't looking where he (or she) is going, or staying indoors and not doing the walking that will help me get more of my balance back. For the most part, I've elected to stay in-and I've really suffered the consequences.
I was walking down the road on Friday-it was actually a dry day. Miracles happen!!! I fell over. Suddenly, with no warning whatsoever, I felt myself go. Luckily, there was a wall right next to me, and I crashed into it. It has been that kind of month - but I have managed to be more philosophical, and to realize that it will take longer than I originally thought to get back that 80%-that magic 80% that I want so desperately. I need to stop feeling both vulnerable and disabled - because I feel that at some point, I will be neither of those. Hopefully - and it will take a lot more work to get there.
One thing I have been thinking about since Christmas is my resolution list for 2013. I have the same resolutions I have every year: put an end to procrastination, change my diet, lose weight, do more exercise, meditate regularly, be more positive...the usual things that most friends feel they want to do, too. And I always break the resolutions within the first week of January! Eeek..does that sound familiar? Everyone I know makes at least one of those resolutions - and everyone I know breaks them around the same time I do: somewhere around the fifth of January. Best not to resolve anything, and just go and do it.
I've got something of a different resolution this year - in addition to the usual ones I listed above. I have had a really tough three years. In fact, I have had a thoroughly abominable decade. These last ten years have been the worst ten years of my life-and that is going some, I can tell you. I've carried a great deal of anger, sometimes fury - and fear, anxiety, tremendous stress - and it has all been magnified since the big deal of 2010. I've also felt a huge sense of betrayal, and I've felt let down and victimized, especially by the hospital. And I have to let all that go, no matter how difficult it is and no matter how long it takes.
So-I know that I can't solve problems with the same mindset that created them. I also know that I do not want to carry the anger and all the other toxic emotions from the last decade into the next one. I've been my own therapist (and at least, in this case, my therapist and I speak the same language!!!). I understand how toxic emotions destroy the person who feels them - even though the perpetrator(s) feel absolutely nothing.
Not everyone thinks or feels the same way I do (which is really annoying!!). Other people don't feel the sense of guilt and remorse I think they should feel. I've been beating myself up over all this injustice for years. Has it changed anything or anyone? No, of course it hasn't. Has it improved my life in any way? No, of course it hasn't - it has done precisely the opposite.
Regaining more of my balance and visual acuity means that I have to work very hard, do what I have been told to do, stay immobile (or in the house) less and walk more, regardless of weather, ignorant people, or the fact that I'm feeling either too tired or too lazy (or both). The brain will not make new neural pathways unless it is constantly challenged - and stress, anger, bad diet, bad weather...all the factors I've written about in the last year-really, really hold back any kind of progress.
So-I need to dump the negative feelings, the negative people, the toxic emotions-and work with a different, more positive mindset. This isn't a maybe I will, maybe I won't kind of thing; it's an absolute necessity, and changing from a glass half empty cynic to a glass half full realistic optimist will be a challenge.
My life has been one challenge after another, and this huge challenge isn't just another one, but one that will be life-changing. If I want to live a better life - and I do - I have to pick up the gauntlet and get to work. No excuse will do; any excuse is just feeble, in my view.
So there you have it. I've got another huge challenge ahead of me for 2013: going into the new year, and a new decade, without the mindset I have dragged with me for the last year (and decade).
Tonight I will raise a glass or three of bubbly (not the domestic, naff Cava that people want to pass off as real champagne!! It's like serving Ripple and telling people it's French wine), toast the end of an era, and realistically will have to stop at two glasses (any more and I'm not on the floor, but under it).
So, fingers crossed, I will keep posting my progress (and more bad jokes every chance I get!), and if you have a challenge, have a go with me. The best revenge is success.
Happy New Year, and I will see you on Wednesday!
Monday 31 December 2012
Friday 28 December 2012
The cornerstones of life
Murphy's Law was in operation this week; I thought I was safe from the vomiting flu, and I was a bit smug-that will teach me not to be smug!! I got through Christmas Day with no problems-but then, it hit. Wham!! Nasty little thing, too. So Boxing Day was-well, not a joy, and I will spare the gories. That isn't my idea of a fun way to lose weight, either - not recommended! All these people spreading germs-the problem is, too many people are breathing. It doesn't seem fair.
When I was a freshman in university, I took this psychology course with a professor who used to come into the room and run his fingernails down the blackboard. It had the desired effect: it shut us all up. And the prof carried this very heavy, very ornate walking stick that had a brass top and a brass base. It was very impressive-a real, handcarved walking stick, not a simple wood cane (althought mine does the job, so I'm not complaining).
I mention the walking stick because the prof used to hurl it across the room when someone wasn't paying attention. Within a week, all of us learned how to duck fast. The thing was heavy! And the prof had really, really good aim. Of course, today he would be charged with assault, but in those days, everyone was too afraid of him to complain. Besides, he was very entertaining when he wasn't trying to brain one of his students.
Prof used to write swear words on the blackboard. He once said that he did this to illustrate the point that words only have the meaning we assign to them; if someone who didn't speak English came into the class and read the swear words, the words would have no meaning. This was a very interesting concept-although it didn't stop anyone from swearing, we all used to tell each other not to be offended. I don't know where those students are now-probably in jail.
Prof also said that he has four cornerstones of life, and if we remember-and follow-those cornerstones, we will have a happy life. I found the index card on which I wrote those cornerstones about a million years ago-not that I have ever followed them, but a new year is coming next week, so doing something really constructive would be a good idea.
Number 1: Life is unfair. Things happen, and there is nothing we can do to change them. Birds eat worms; if you think that's fair, just ask a worm. There are tsunamis, places where there is horrendous poverty, and people killing each other for no reason whatsoever. Fair? Nope, I think not.
Number 2: There are no guarantees in life. We make plans, we get married (and maybe it'll last, and maybe not. I'm a pretty good expert on that one!), we decide where we are going for our holidays- and then we get some debilitating disease, or we get struck by lightning, or we are walking past a building where someone is delivering a piano and the thing slips, drops on our head, and it's goodnight, Vienna. Splat-that's a really quick way to go out, incredibly dramatic-hopefully it will be a Steinway, because if you are going to be splattered all over the pavement, it should be by something that is very expensive and top of the line.
Number 3: Someone is always moving the goalposts. Just when you think you are nearly where you want to be, some prat moves the goalpost. When you think you are within reach of the pot of gold at the end of the rainbow, it turns out to be a McDonald's - and someone has moved it!!!!! (this is rather connected to numbers 1 and 2, don't you think?)
Number 4 (my favorite): Never assume anything. For example, someone says something really nasty, and you automatically assume that you have done something to make them angry. Or you see someone you know in the street, and they pretend (or seem to pretend) you aren't there. What's up with that? It could just be that they either didn't see you coming toward them, or (in scenario number 1) they've just been fired, they have a headache, they have PMS, whatever. Never assume it has to do with you, or it's your problem. Nine times out of ten (maybe ten times out of ten) it's their problem, not yours.
I read the card and thought of all the people who have knocked me flat-or hit me-or nearly knocked me in front of traffic-or cursed at me-in the last two and a half years, and I realized that I have been really upset for no useful reason. I decided that these people a) have no manners at all; b)have probably been brought up in a barnyard - or a sewer; c) are total retards who have less intelligence than a cowpat.
Really, that helps; after all, how can you be angry with a retard who doesn't know any better (or seem to care, for that matter?). They are what they are. Sadly. It's as futile to stay angry with them as it is to be angry with a cockroach for being a cockroach. After all, I do live in a place where the average IQ is allegedly 80; really, I think it's closer to 40. A lot of villages are missing their idiots. Anger is futile.
Of course, I could invest in body armor. Or-I will just hope and pray that some (possibly all) of these people get hit on the head with a falling piano. A grand piano. From a great height. And - a cheap one.
When I was a freshman in university, I took this psychology course with a professor who used to come into the room and run his fingernails down the blackboard. It had the desired effect: it shut us all up. And the prof carried this very heavy, very ornate walking stick that had a brass top and a brass base. It was very impressive-a real, handcarved walking stick, not a simple wood cane (althought mine does the job, so I'm not complaining).
I mention the walking stick because the prof used to hurl it across the room when someone wasn't paying attention. Within a week, all of us learned how to duck fast. The thing was heavy! And the prof had really, really good aim. Of course, today he would be charged with assault, but in those days, everyone was too afraid of him to complain. Besides, he was very entertaining when he wasn't trying to brain one of his students.
Prof used to write swear words on the blackboard. He once said that he did this to illustrate the point that words only have the meaning we assign to them; if someone who didn't speak English came into the class and read the swear words, the words would have no meaning. This was a very interesting concept-although it didn't stop anyone from swearing, we all used to tell each other not to be offended. I don't know where those students are now-probably in jail.
Prof also said that he has four cornerstones of life, and if we remember-and follow-those cornerstones, we will have a happy life. I found the index card on which I wrote those cornerstones about a million years ago-not that I have ever followed them, but a new year is coming next week, so doing something really constructive would be a good idea.
Number 1: Life is unfair. Things happen, and there is nothing we can do to change them. Birds eat worms; if you think that's fair, just ask a worm. There are tsunamis, places where there is horrendous poverty, and people killing each other for no reason whatsoever. Fair? Nope, I think not.
Number 2: There are no guarantees in life. We make plans, we get married (and maybe it'll last, and maybe not. I'm a pretty good expert on that one!), we decide where we are going for our holidays- and then we get some debilitating disease, or we get struck by lightning, or we are walking past a building where someone is delivering a piano and the thing slips, drops on our head, and it's goodnight, Vienna. Splat-that's a really quick way to go out, incredibly dramatic-hopefully it will be a Steinway, because if you are going to be splattered all over the pavement, it should be by something that is very expensive and top of the line.
Number 3: Someone is always moving the goalposts. Just when you think you are nearly where you want to be, some prat moves the goalpost. When you think you are within reach of the pot of gold at the end of the rainbow, it turns out to be a McDonald's - and someone has moved it!!!!! (this is rather connected to numbers 1 and 2, don't you think?)
Number 4 (my favorite): Never assume anything. For example, someone says something really nasty, and you automatically assume that you have done something to make them angry. Or you see someone you know in the street, and they pretend (or seem to pretend) you aren't there. What's up with that? It could just be that they either didn't see you coming toward them, or (in scenario number 1) they've just been fired, they have a headache, they have PMS, whatever. Never assume it has to do with you, or it's your problem. Nine times out of ten (maybe ten times out of ten) it's their problem, not yours.
I read the card and thought of all the people who have knocked me flat-or hit me-or nearly knocked me in front of traffic-or cursed at me-in the last two and a half years, and I realized that I have been really upset for no useful reason. I decided that these people a) have no manners at all; b)have probably been brought up in a barnyard - or a sewer; c) are total retards who have less intelligence than a cowpat.
Really, that helps; after all, how can you be angry with a retard who doesn't know any better (or seem to care, for that matter?). They are what they are. Sadly. It's as futile to stay angry with them as it is to be angry with a cockroach for being a cockroach. After all, I do live in a place where the average IQ is allegedly 80; really, I think it's closer to 40. A lot of villages are missing their idiots. Anger is futile.
Of course, I could invest in body armor. Or-I will just hope and pray that some (possibly all) of these people get hit on the head with a falling piano. A grand piano. From a great height. And - a cheap one.
Monday 24 December 2012
The origin of the light
For years I've been saying that the light at the end of the tunnel has to be an oncoming express train-such is my luck, if my ship was coming in, it was probably the Titanic. Needless to say, I have always been a glass half empty person, masquerading as a glass half full person!!
It's Christmas-AGAIN- and it always seems to come around so much more quickly than it did when I was growing up!! Funny thing, that...
I speak to people and I get the same messages over and over again, so I know that I am supposed to finally get it: offload, clear out the storage unit, clear out all the old stuff I will never use again-and that includes some pretty negative thoughts.
I had to call the noise people last night-again-and the police rang me yesterday afternoon, because they want to come and see me this afternoon to make a report about the wack job who lives upstairs. Goody. Will anything be done? Probably the same thing that has been done all along: nothing. In this country, you have to be murdered-in front of witnesses-for the police to take any action. They like to do the beating themselves. Am I a total cynic? Hey, I've spent more than half my life in this country-so yes, I am.
I promised myself last year that I would not only get moving on clearing out all the stuff in the storage unit (like NJ says, who needs six woks??), but also the old ways of thinking. And I also promised myself that I would jettison all the people who are - well - total tossers. I don't need negative people around me, I'm negative enough as it is!!! But-I'm working on that.
It has occurred to me lately that I am so lucky to have made it this far; I should have been dead years ago. CVID, cancer, now Ehlers-Danlos (there is a question in my mind about the severity of that one), and bilateral vestibular hypofunction...that has been an awful lot to handle. And I have handled it all pretty well, I think. I just keep getting up every time I get knocked down-and that's a lot. I just refuse to stay down, and refuse to roll over.
My lawyer called me to tell me that Bart's insists that they followed the Trust's protocol, and did nothing wrong. I instructed her to ask them if following the protocol includes ignoring all the symptoms of gentamicin poisoning, even when the patient is clearly exhibiting severe symptoms-and is asking to be taken off the drug. Needless to say, there was hesitation on the line. If Bart's wants a battle, they have one. And, because the laws in this country are so retarded (like a lot of the people!), hospitals everywhere get away with the most horrendous cases of obvious malpractice. I'm not alone there, not by a long shot. But I seem to be different from so many other people who have been abused by the NHS: I won't give up. I will raise a stink that Bart's will never forget, and I will go public: I'll contact every newspaper, television station, anyone else I can think of, because someone has to have the cojones to do it. That would be me. Again. As usual.
And so it is Christmas, and everything will be closed tomorrow; apart from turkey, and all the goodies that go with it-not to mention some really good wine- for me, it's business as usual. And no hospital appointments until January!!! That is a good enough reason to celebrate.
And, by the way, it's raining. It's been like a monsoon. But that is nothing new here. I walk in the rain anyway. I've come that far in two years!!
Merry Christmas to you all, eat, drink, be merry-mostly eat. And drink...And eat some more. And drink some more. Live it up; nobody knows what is around the corner!!
See you Thursday-possibly hung over!!
It's Christmas-AGAIN- and it always seems to come around so much more quickly than it did when I was growing up!! Funny thing, that...
I speak to people and I get the same messages over and over again, so I know that I am supposed to finally get it: offload, clear out the storage unit, clear out all the old stuff I will never use again-and that includes some pretty negative thoughts.
I had to call the noise people last night-again-and the police rang me yesterday afternoon, because they want to come and see me this afternoon to make a report about the wack job who lives upstairs. Goody. Will anything be done? Probably the same thing that has been done all along: nothing. In this country, you have to be murdered-in front of witnesses-for the police to take any action. They like to do the beating themselves. Am I a total cynic? Hey, I've spent more than half my life in this country-so yes, I am.
I promised myself last year that I would not only get moving on clearing out all the stuff in the storage unit (like NJ says, who needs six woks??), but also the old ways of thinking. And I also promised myself that I would jettison all the people who are - well - total tossers. I don't need negative people around me, I'm negative enough as it is!!! But-I'm working on that.
It has occurred to me lately that I am so lucky to have made it this far; I should have been dead years ago. CVID, cancer, now Ehlers-Danlos (there is a question in my mind about the severity of that one), and bilateral vestibular hypofunction...that has been an awful lot to handle. And I have handled it all pretty well, I think. I just keep getting up every time I get knocked down-and that's a lot. I just refuse to stay down, and refuse to roll over.
My lawyer called me to tell me that Bart's insists that they followed the Trust's protocol, and did nothing wrong. I instructed her to ask them if following the protocol includes ignoring all the symptoms of gentamicin poisoning, even when the patient is clearly exhibiting severe symptoms-and is asking to be taken off the drug. Needless to say, there was hesitation on the line. If Bart's wants a battle, they have one. And, because the laws in this country are so retarded (like a lot of the people!), hospitals everywhere get away with the most horrendous cases of obvious malpractice. I'm not alone there, not by a long shot. But I seem to be different from so many other people who have been abused by the NHS: I won't give up. I will raise a stink that Bart's will never forget, and I will go public: I'll contact every newspaper, television station, anyone else I can think of, because someone has to have the cojones to do it. That would be me. Again. As usual.
And so it is Christmas, and everything will be closed tomorrow; apart from turkey, and all the goodies that go with it-not to mention some really good wine- for me, it's business as usual. And no hospital appointments until January!!! That is a good enough reason to celebrate.
And, by the way, it's raining. It's been like a monsoon. But that is nothing new here. I walk in the rain anyway. I've come that far in two years!!
Merry Christmas to you all, eat, drink, be merry-mostly eat. And drink...And eat some more. And drink some more. Live it up; nobody knows what is around the corner!!
See you Thursday-possibly hung over!!
Saturday 22 December 2012
Only five more days to go
Oh joy-nearly Christmas. Escuse me, but wasn't the world supposed to end? Honestly, I am less worried about the world ending and more concerned about the world continuing as it is!!
I had a major disagreement (okay, a fight-verbal, though) with the nutjob upstairs. He was hammering all night Wednesday-who hammers all night? These aren't large flats-who hammers incessantly for two years? I swear, the man is bonkers and should be locked up somewhere.
So, on Thursday night-when it started again-I went upstairs and pounded on his door. He was shouting from behind a closed door, so I started to go back downstairs-and suddenly he came hurtling out of his flat, with his lodger hanging onto him to keep him from attacking me (or for whatever reason), and I had a go. He started to swear at me, and threaten me, and at one point he grabbed his groin and started to pull the zipper down, telling me he was going to urinate on me. Such class!! Such insanity!! I told him to go ahead, that it is probably so small that nobody could find it-but, I said, I will find it even if I have to use a microscope-then I will cut it off.
I was fuming. I went downstairs, rang the Haringey noise team (they are so useless), and yesterday morning I rang the antisocial behaviour team, the council, and the police. We will see what happens-probably nothing.
I wish I knew the kinds of people who would go up there and beat seven kinds of crap out of him, and tell him that if he doesn't stop, they will beat him some more!!!
Obviously he comes from a country where women are treated as less than cockroaches. Grrrr!!! Too bad I don't have a black belt. I would hit him with it.
I had a major disagreement (okay, a fight-verbal, though) with the nutjob upstairs. He was hammering all night Wednesday-who hammers all night? These aren't large flats-who hammers incessantly for two years? I swear, the man is bonkers and should be locked up somewhere.
So, on Thursday night-when it started again-I went upstairs and pounded on his door. He was shouting from behind a closed door, so I started to go back downstairs-and suddenly he came hurtling out of his flat, with his lodger hanging onto him to keep him from attacking me (or for whatever reason), and I had a go. He started to swear at me, and threaten me, and at one point he grabbed his groin and started to pull the zipper down, telling me he was going to urinate on me. Such class!! Such insanity!! I told him to go ahead, that it is probably so small that nobody could find it-but, I said, I will find it even if I have to use a microscope-then I will cut it off.
I was fuming. I went downstairs, rang the Haringey noise team (they are so useless), and yesterday morning I rang the antisocial behaviour team, the council, and the police. We will see what happens-probably nothing.
I wish I knew the kinds of people who would go up there and beat seven kinds of crap out of him, and tell him that if he doesn't stop, they will beat him some more!!!
Obviously he comes from a country where women are treated as less than cockroaches. Grrrr!!! Too bad I don't have a black belt. I would hit him with it.
Wednesday 19 December 2012
Nurse Ratched and the laws of karma
I tried to get onto this blog on Monday-with no luck at all. Talk about the laws of karma!!
For those of you who either aren't of a certain age or have never seen Jack Nicholson's movies-there is always Google!! Google is great...
I had a nurse years ago-before the gentamicin palaver-who was called Daphne. She was really evil-not only to me, but to all the other patients in the clinic. I nicknamed her Nurse Ratched-very appropriate, I thought!! And-I called her that to her face. I think that if you are going to call a spade a spade, or a bitch a bitch-do it to their face. And if they are bigger than you, prepare to run.
So Daphne (Nurse Ratched) walked around like she had swallowed a ton of prunes but still suffered from terminal constipation. She was nasty, and rude-and, at one point, another patient called across the room to me that I had given her the appropriate nickname (I sometimes get it right!!). One day I came into the clinic for my semi-annual exam and bloodletting, and Ratched wasn't there. I asked one of the nurses if she was gone, and I was told that she had retired. We patients all celebrated that day. What a great day!
And-I mention this for a reason. I got an email on Monday from a nurse I knew well in those Ratched days; Jess had moved on, but we email each other every Christmas, just to catch up and to send holiday greetings. It seems that our Nurse Ratched was walking along Whitechapel - just near the Royal London Hospital- and had a temporary lapse in concentration, and was hit by the 106 bus. Really, how funny-if I'm ever going to be hit by a bus (heaven forbid), at least it should be an upmarket bus, not the 106!! Jess said that people saw Daphne bounce (she's put on some weight since she retired-nobody to bully, I suspect). But the bus was only just pulling away, so Daphne wasn't hurt, just embarrassed (I wonder if any patients witnessed this and cheered). I wrote back to Jess and commented that it was too bad that she wasn't put onto a ward and treated by another Nurse Ratched just so she would be able to experience the same kind of damage she caused all of us...in any case, we had a good laugh over it.
Christmas, to me, is the season to be grumpy, pissed off, and generally cold (it's bloody freezing outside-and inside). And I start to think about what I wanted to accomplish during the year, but didn't. That makes me even more grumpy. So I thought about mortality, and how I need to let go of a lot of bad feelings and start really living in 2013. It's a new year-and each year I say I won't carry the same old crap around, because it's in the past and there is nothing I can do to change it. No resolutions, though-I break them all within a week!!
I thought about my grave, and my headstone (a bit macabre, that, but necessary at some point).
I decided that the inscription would read like this:
She lived to a hundred years old, and was completely healthy in body, mind and spirit. She was kind, compassionate, wickedly funny, and a good friend; she outlived (by some thirty + years) three incompetent medical consultants, some very stupid nurses, loads of completely braindead neighbors, a bunch of very obnoxious cousins, and one evil brother whom she called "the Antichrist"- and an ex-husband, about whom the less said, the better. She lived her life to the full, and the last words she said before she keeled over were: "at least I never got hit by the 106 bus to Whitechapel".
It will have to be a very large headstone. With very small printing.
For those of you who either aren't of a certain age or have never seen Jack Nicholson's movies-there is always Google!! Google is great...
I had a nurse years ago-before the gentamicin palaver-who was called Daphne. She was really evil-not only to me, but to all the other patients in the clinic. I nicknamed her Nurse Ratched-very appropriate, I thought!! And-I called her that to her face. I think that if you are going to call a spade a spade, or a bitch a bitch-do it to their face. And if they are bigger than you, prepare to run.
So Daphne (Nurse Ratched) walked around like she had swallowed a ton of prunes but still suffered from terminal constipation. She was nasty, and rude-and, at one point, another patient called across the room to me that I had given her the appropriate nickname (I sometimes get it right!!). One day I came into the clinic for my semi-annual exam and bloodletting, and Ratched wasn't there. I asked one of the nurses if she was gone, and I was told that she had retired. We patients all celebrated that day. What a great day!
And-I mention this for a reason. I got an email on Monday from a nurse I knew well in those Ratched days; Jess had moved on, but we email each other every Christmas, just to catch up and to send holiday greetings. It seems that our Nurse Ratched was walking along Whitechapel - just near the Royal London Hospital- and had a temporary lapse in concentration, and was hit by the 106 bus. Really, how funny-if I'm ever going to be hit by a bus (heaven forbid), at least it should be an upmarket bus, not the 106!! Jess said that people saw Daphne bounce (she's put on some weight since she retired-nobody to bully, I suspect). But the bus was only just pulling away, so Daphne wasn't hurt, just embarrassed (I wonder if any patients witnessed this and cheered). I wrote back to Jess and commented that it was too bad that she wasn't put onto a ward and treated by another Nurse Ratched just so she would be able to experience the same kind of damage she caused all of us...in any case, we had a good laugh over it.
Christmas, to me, is the season to be grumpy, pissed off, and generally cold (it's bloody freezing outside-and inside). And I start to think about what I wanted to accomplish during the year, but didn't. That makes me even more grumpy. So I thought about mortality, and how I need to let go of a lot of bad feelings and start really living in 2013. It's a new year-and each year I say I won't carry the same old crap around, because it's in the past and there is nothing I can do to change it. No resolutions, though-I break them all within a week!!
I thought about my grave, and my headstone (a bit macabre, that, but necessary at some point).
I decided that the inscription would read like this:
She lived to a hundred years old, and was completely healthy in body, mind and spirit. She was kind, compassionate, wickedly funny, and a good friend; she outlived (by some thirty + years) three incompetent medical consultants, some very stupid nurses, loads of completely braindead neighbors, a bunch of very obnoxious cousins, and one evil brother whom she called "the Antichrist"- and an ex-husband, about whom the less said, the better. She lived her life to the full, and the last words she said before she keeled over were: "at least I never got hit by the 106 bus to Whitechapel".
It will have to be a very large headstone. With very small printing.
Saturday 15 December 2012
If you win the rat race - you're still a rat!
Am I growing grumpier as I get older, or am I just a bit fed up with old sayings and platitudes that mean nothing? I get all this old crap from one of the nurses at the London: remember, God never gives you more than you can handle. That's a good example; I want to slap her sideways and say "handle this!!". But I'm not a hitter; I just think it, I never do it. I have to say, it is so tempting sometimes, though!!
Then there is that other ridiculous saying that people trot out when you are in deep doodoo-and they probably have never seen deep doodoo, not to mention ever having found themselves in it up to the eyeballs: what doesn't kill you makes you stronger. Ewwww...really? Who said that, anyway? Someone dead, probably.
I've had this wretched flu for ten days, and I'm still coughing, spluttering, sneezing, and my voice has gone very deep (I wish I could keep the deep voice but get rid of all the other stuff. I always wanted a deep voice, like Lauren Bacall. Nope-only when I'm sick. There is no fairness in life). When I went along to the hospital last week (the Royal London. Where else are people so incompetent?), I was coughing so hard, you could hear me all the way down the corridor. I thought I was going to burst a blood vessel, that is how hard I was coughing. And don't you know, the same nurse (Lorena, she of the constant platitudes-as above- a real idiot if there ever was one) ignored me for about twenty minutes, and then, as she was passing me, smiled and said "oh, hello, how are you today?". I just looked at her and said "how do you think I am?" I was able to resist telling her that if she couldn't tell by my coughing and choking, she should change jobs-but I resisted, because there could come a day when she is the one who will take my blood. And, as far as I am concerned, Hell will freeze over before I will ever let that happen!!
The longer I remain here, the more irascible I seem to become. I know I should be looking on the bright side-but sometimes it is very difficult to find a bright side!!
I put this down to the fact that we are nearing the end of another year-and I always get disgruntled at Christmas, because it was at Christmas that I decided I'd had enough, and I wanted a divorce. I'm sure I'm not the only person in the world who decided at Christmas that enough was enough, and it was time to beat it out of Dodge. It hasn't been easy-but it beats the hell out of being abused and miserable.
'Tis the season to be grumpy. But-I'm still here, and I'm not planning on checking out any time soon. I want to be around for a very long time-and be a pain in the ass to everyone who deserves it!!
Then there is that other ridiculous saying that people trot out when you are in deep doodoo-and they probably have never seen deep doodoo, not to mention ever having found themselves in it up to the eyeballs: what doesn't kill you makes you stronger. Ewwww...really? Who said that, anyway? Someone dead, probably.
I've had this wretched flu for ten days, and I'm still coughing, spluttering, sneezing, and my voice has gone very deep (I wish I could keep the deep voice but get rid of all the other stuff. I always wanted a deep voice, like Lauren Bacall. Nope-only when I'm sick. There is no fairness in life). When I went along to the hospital last week (the Royal London. Where else are people so incompetent?), I was coughing so hard, you could hear me all the way down the corridor. I thought I was going to burst a blood vessel, that is how hard I was coughing. And don't you know, the same nurse (Lorena, she of the constant platitudes-as above- a real idiot if there ever was one) ignored me for about twenty minutes, and then, as she was passing me, smiled and said "oh, hello, how are you today?". I just looked at her and said "how do you think I am?" I was able to resist telling her that if she couldn't tell by my coughing and choking, she should change jobs-but I resisted, because there could come a day when she is the one who will take my blood. And, as far as I am concerned, Hell will freeze over before I will ever let that happen!!
The longer I remain here, the more irascible I seem to become. I know I should be looking on the bright side-but sometimes it is very difficult to find a bright side!!
I put this down to the fact that we are nearing the end of another year-and I always get disgruntled at Christmas, because it was at Christmas that I decided I'd had enough, and I wanted a divorce. I'm sure I'm not the only person in the world who decided at Christmas that enough was enough, and it was time to beat it out of Dodge. It hasn't been easy-but it beats the hell out of being abused and miserable.
'Tis the season to be grumpy. But-I'm still here, and I'm not planning on checking out any time soon. I want to be around for a very long time-and be a pain in the ass to everyone who deserves it!!
Thursday 13 December 2012
So much for "call me bionic"
I went to the gym yesterday-and did upper body exercises, nearly rupturing myself in preparation for using crutches after the operation. Well- I am exaggerating! I worked hard, though, and I'm paying for it the next day! But that was fine, because I'm one of those strange people who actually likes the gym (once I force myself to get up and go, that is). But, then, I like brussels sprouts, too, so what can one say??
At 9:00 last night, I received a phone call from the anesthetist at the RNOH (the same person who kept me waiting for forty minutes outside his office the other day, you might remember...I still don't know what he was doing, but at least I didn't hear any heavy breathing when I stood outside his door). The surgery has been cancelled-or, rather, postponed-and no date has been set.
Apparently, there seemed to be a question about an echocardiogram I had when I was an inpatient in 2010-the rather infamous period of the gentamicin poisoning-and the people at the RNOH are not very happy. They want me to have another echo and they want me to be seen by a cardiologist. It seems I have something called "Ehlers-Danlos Syndrome". I did see this on various pieces of correspondence from Barts in the last two years-but when I questioned it, I was dismissed by the immunology consultant: it's nothing, it has to do with the gut problems, I was told. Now the RNOH wants to be certain that there is nothing wrong with my heart.
Clearly, the people at the RNOH are far more thorough and competent than the people at Barts and the London-no wonder so many people sue them!!! And-since my heart is one of my all time favorite organs (and I never had a problem with it before), I discussed with the doc last night about contacting my GP and having her refer me for an echocardiogram. Best to be on the safe side, after all. I learned that after dealing with the three dumb monkeys at the Royal London!
So, the surgery will be rescheduled once the echo has been done. And I was not a happy bunny last night, I can tell you! I rang the office number at the Royal London, and who should pick up but Hilary Longhurst (the immunologist I fired last year)? I was shocked: it was after 9pm, so what was she doing there? Anyway, I left a message for Matt (the new Hilary), and Longhurst proceeded to tell me that I would have to go through my GP for the echo (I knew this anyway, and that was my intention, but Longhurst also pointed out that they are immunologists, and don't have anything to do with ordering other tests. That's another lie out of her mouth, because the immunologists ordered the test in 2010). It never ceases to amaze me, how the people at Barts and the London just lie without even thinking about it!!
I must admit I felt upset at having to wait an unspecified period of time for the surgery-but I'm not fussed about being bionic at the moment! I decided to put a positive spin on this new development: now I have more time to get myself really fit for surgery. So it'll be the gym at least three times a week (preferably four) and I will heal more quickly. Well-either that, or fall flat on my face when I try to master crutches!
I will have a bionic-free Christmas, and actually have muscles by the time I have surgery. I can do a lot between now and then (and all those Kettle Chips...yum).
At 9:00 last night, I received a phone call from the anesthetist at the RNOH (the same person who kept me waiting for forty minutes outside his office the other day, you might remember...I still don't know what he was doing, but at least I didn't hear any heavy breathing when I stood outside his door). The surgery has been cancelled-or, rather, postponed-and no date has been set.
Apparently, there seemed to be a question about an echocardiogram I had when I was an inpatient in 2010-the rather infamous period of the gentamicin poisoning-and the people at the RNOH are not very happy. They want me to have another echo and they want me to be seen by a cardiologist. It seems I have something called "Ehlers-Danlos Syndrome". I did see this on various pieces of correspondence from Barts in the last two years-but when I questioned it, I was dismissed by the immunology consultant: it's nothing, it has to do with the gut problems, I was told. Now the RNOH wants to be certain that there is nothing wrong with my heart.
Clearly, the people at the RNOH are far more thorough and competent than the people at Barts and the London-no wonder so many people sue them!!! And-since my heart is one of my all time favorite organs (and I never had a problem with it before), I discussed with the doc last night about contacting my GP and having her refer me for an echocardiogram. Best to be on the safe side, after all. I learned that after dealing with the three dumb monkeys at the Royal London!
So, the surgery will be rescheduled once the echo has been done. And I was not a happy bunny last night, I can tell you! I rang the office number at the Royal London, and who should pick up but Hilary Longhurst (the immunologist I fired last year)? I was shocked: it was after 9pm, so what was she doing there? Anyway, I left a message for Matt (the new Hilary), and Longhurst proceeded to tell me that I would have to go through my GP for the echo (I knew this anyway, and that was my intention, but Longhurst also pointed out that they are immunologists, and don't have anything to do with ordering other tests. That's another lie out of her mouth, because the immunologists ordered the test in 2010). It never ceases to amaze me, how the people at Barts and the London just lie without even thinking about it!!
I must admit I felt upset at having to wait an unspecified period of time for the surgery-but I'm not fussed about being bionic at the moment! I decided to put a positive spin on this new development: now I have more time to get myself really fit for surgery. So it'll be the gym at least three times a week (preferably four) and I will heal more quickly. Well-either that, or fall flat on my face when I try to master crutches!
I will have a bionic-free Christmas, and actually have muscles by the time I have surgery. I can do a lot between now and then (and all those Kettle Chips...yum).
Tuesday 11 December 2012
Something I forgot to add
Yes, I forgot to add that the next time you are waiting forty minutes for your doctor-remember to wear gloves!! And a mask!!
Back from the (walking) dead
I know that sounds so dramatic!! I have had the nastiest flu for the past week-the usual symptoms: headache, fever, joint pains, etc. If you've had it (and just about everyone has), you will know what I mean. So I have been in bed, complaining (I am the world's worst patient: some people want to be left alone, I want to complain!).
I did go to see the consultant at Whitechapel on Wednesday, the day the flu really came out. And I also had to go to Stanmore yesterday for all the pre-admission testing, since my bionic knee surgery is scheduled for the first week in January. So-that is a rather neat intro into my observations about doctors.
Vast experience tells me that many (perhaps all) doctors have three genes that most of us lack. The first is the "I must be at LEAST forty minutes late for my appointments, because that makes me feel important". Perhaps it's a gene; perhaps it's a virus. Whatever. In all my years in this country, I have never known a doctor to be on time. Really! I'll bet it's the same everywhere.
There is also the apology gene: no matter how late the doctor is, he (or she) must never apologize - not for being late, or for screwing up and crippling a patient, nope. Never apologize. That is a sign of good manners, after all, and so many doctors think they are God, so why apologize for being an insensitive jerk??
Then there is the "when in doubt, medicate" gene. Never allow a patient to leave the office without at least one prescription. It might be the WRONG prescription, but, hey, it's a prescription. Do doctors have some quota to fill, or do they just feel that they are making the patient feel that they have been properly cared for (having been kept waiting for at least forty minutes!)??
At the Royal London last week, I was coughing so much I could feel my face turning beet red-I thought I would cough until I expired. And all Matt said was: how are you feeling? What? How the hell do you think I'm feeling? I was starting to develop all the symptoms of flu-just flu, I thought (sometimes we can diagnose ourselves better than anyone else can), and he decided that I have an inflammation (yes, you idiot, and it's caused by flu!!!), so I should take oral steroids for a week (I didn't). I know that Barts wants me to change hospitals, but please do NOT kill me off (at least, not until after I sue your behinds in court).
So yesterday, I went to Stanmore and had the usual tests before admission: an xray, ECG, and some bloodwork (which was hilarious, because the nurses couldn't find a vein if it was the size of the motorway). I then saw the anesthetist, who kept me waiting-yes, you guessed it, forty minutes!!! There was nobody in his office, and nobody else waiting, but he still kept me sitting outside for forty minutes, and then came out and told me that he was going to go get my chart.
So what was he doing for forty minutes in his office, keeping me waiting outside (no apology, naturally)? I don't know, but I certainly hope he washed his hands afterward. Heh. Ewwwwwww....!!!
Never mind-I don't even want to think about that! All I know is, I still have the head cold part of this flu, but I haven't been to the gym, and I have felt too dreadful to do my exercises-so my balance and vision have both really suffered. Time to get moving and regain some of what I lost by being sick.
It's interesting that I would have been devastated (and very depressed) if this had happened six months ago; I would have thought I would never get that bit back-but now I understand that I just have to persevere, flu or no flu. So that is exactly what I am going to do: persevere, and go back what I temporarily lost-that, and more.
You'll have to excuse me while I go outside and cough all over everyone!!!
I did go to see the consultant at Whitechapel on Wednesday, the day the flu really came out. And I also had to go to Stanmore yesterday for all the pre-admission testing, since my bionic knee surgery is scheduled for the first week in January. So-that is a rather neat intro into my observations about doctors.
Vast experience tells me that many (perhaps all) doctors have three genes that most of us lack. The first is the "I must be at LEAST forty minutes late for my appointments, because that makes me feel important". Perhaps it's a gene; perhaps it's a virus. Whatever. In all my years in this country, I have never known a doctor to be on time. Really! I'll bet it's the same everywhere.
There is also the apology gene: no matter how late the doctor is, he (or she) must never apologize - not for being late, or for screwing up and crippling a patient, nope. Never apologize. That is a sign of good manners, after all, and so many doctors think they are God, so why apologize for being an insensitive jerk??
Then there is the "when in doubt, medicate" gene. Never allow a patient to leave the office without at least one prescription. It might be the WRONG prescription, but, hey, it's a prescription. Do doctors have some quota to fill, or do they just feel that they are making the patient feel that they have been properly cared for (having been kept waiting for at least forty minutes!)??
At the Royal London last week, I was coughing so much I could feel my face turning beet red-I thought I would cough until I expired. And all Matt said was: how are you feeling? What? How the hell do you think I'm feeling? I was starting to develop all the symptoms of flu-just flu, I thought (sometimes we can diagnose ourselves better than anyone else can), and he decided that I have an inflammation (yes, you idiot, and it's caused by flu!!!), so I should take oral steroids for a week (I didn't). I know that Barts wants me to change hospitals, but please do NOT kill me off (at least, not until after I sue your behinds in court).
So yesterday, I went to Stanmore and had the usual tests before admission: an xray, ECG, and some bloodwork (which was hilarious, because the nurses couldn't find a vein if it was the size of the motorway). I then saw the anesthetist, who kept me waiting-yes, you guessed it, forty minutes!!! There was nobody in his office, and nobody else waiting, but he still kept me sitting outside for forty minutes, and then came out and told me that he was going to go get my chart.
So what was he doing for forty minutes in his office, keeping me waiting outside (no apology, naturally)? I don't know, but I certainly hope he washed his hands afterward. Heh. Ewwwwwww....!!!
Never mind-I don't even want to think about that! All I know is, I still have the head cold part of this flu, but I haven't been to the gym, and I have felt too dreadful to do my exercises-so my balance and vision have both really suffered. Time to get moving and regain some of what I lost by being sick.
It's interesting that I would have been devastated (and very depressed) if this had happened six months ago; I would have thought I would never get that bit back-but now I understand that I just have to persevere, flu or no flu. So that is exactly what I am going to do: persevere, and go back what I temporarily lost-that, and more.
You'll have to excuse me while I go outside and cough all over everyone!!!
Tuesday 4 December 2012
What I want for Christmas: amnesia
I've been through so much in my life-and through all of it, I managed not to be depressed for long. I get down, but I stay there for a few days at the most. At least, I thought so-until now.
These two years have been really very difficult-dire, in fact-and, really, I find myself occasionally envying people who have amnesia, because they can at least forget everything that happened in the past. History? What history? I'd like selective amnesia: I would like to be able to choose what to forget. I wonder how many other people feel that way! Someone would make billions if they could invent a pill that would accomplish that; it would probably put all the shrinks in the world out of business!!
And, speaking of shrinks...I went to my GP a few months ago and asked her to refer me for psychotherapy. I figured: I'm not bipolar, or schizophrenic, or psychotic, or psychopathic (well, perhaps a little, but only when I see the people who crippled me!! That's a joke, by the way...). But I do have periods of depression that last anywhere from a few hours to a week at a time. And, frankly, I'm boring myself by hiding out in my little apartment, stuffing myself with Kettle Chips and watching mindless junk on television. So I think I could benefit from some professional help with finding my way through this minefield. Am I still angry? Well-is the Pope Catholic? If I didn't feel angry, depressed, fearful-I would really be completely bonkers.
So I went yesterday for an assessment by someone who is (allegedly) a qualified shrink. Now, I don't need (and would never take) any medication; I have to get through this either by myself or with the guidance of someone who is professionally trained. I figured that maybe a psychiatrist would know the best way forward.
I think I expected a nice office in a pleasant, small building in an equally pleasant location. I think I also watch too many movies!! This is a large building, very clinical, very impersonal, in the middle of town, with lots of offices and lots of people around. As we all know, a lot of people coming at me make me very dizzy. So I staggered a little, but I managed not to fall over.
Well-I met the psychiatrist for the assessment, and I discovered that he speaks practically no English. Imagine: this man didn't smile at all, was very unwelcoming, and took no notes. Who takes no notes? And he was so dour; it would have cost nothing to smile. And he kept repeating what he thought I said-except that what he thought I said wasn't what I said. I put this down to the fact that he didn't understand me. Why on earth would they get someone to assess me who doesn't speak (or understand) English? And then he would mumble something that he clearly thought was intelligent, and I would have to ask him to repeat it, because I couldn't understand him. It was almost comic-and would have been, if it hadn't been infuriating.
So he said at the end of the session that he believes that my problems stem from the fact that the people in the hospital didn't listen to me, and their ignorance caused the gentamicin toxicity that ruined my life and incapacitated me for life. No shit-I said that at the very beginning of the assessment session!
I can look back on this and laugh, since it is now a day after this ridiculous farce occurred. I think that shrinks become shrinks because they are crazier than the rest of us. In fact, I'm now sure of it!
You know what? I think that (compared to this guy yesterday, at least) I'm normal. And I also think that I can find a way forward without the "help" of someone who never cracks a smile and who doesn't speak the language. A rhesus monkey would have been of more help. AND it would have smiled.
These two years have been really very difficult-dire, in fact-and, really, I find myself occasionally envying people who have amnesia, because they can at least forget everything that happened in the past. History? What history? I'd like selective amnesia: I would like to be able to choose what to forget. I wonder how many other people feel that way! Someone would make billions if they could invent a pill that would accomplish that; it would probably put all the shrinks in the world out of business!!
And, speaking of shrinks...I went to my GP a few months ago and asked her to refer me for psychotherapy. I figured: I'm not bipolar, or schizophrenic, or psychotic, or psychopathic (well, perhaps a little, but only when I see the people who crippled me!! That's a joke, by the way...). But I do have periods of depression that last anywhere from a few hours to a week at a time. And, frankly, I'm boring myself by hiding out in my little apartment, stuffing myself with Kettle Chips and watching mindless junk on television. So I think I could benefit from some professional help with finding my way through this minefield. Am I still angry? Well-is the Pope Catholic? If I didn't feel angry, depressed, fearful-I would really be completely bonkers.
So I went yesterday for an assessment by someone who is (allegedly) a qualified shrink. Now, I don't need (and would never take) any medication; I have to get through this either by myself or with the guidance of someone who is professionally trained. I figured that maybe a psychiatrist would know the best way forward.
I think I expected a nice office in a pleasant, small building in an equally pleasant location. I think I also watch too many movies!! This is a large building, very clinical, very impersonal, in the middle of town, with lots of offices and lots of people around. As we all know, a lot of people coming at me make me very dizzy. So I staggered a little, but I managed not to fall over.
Well-I met the psychiatrist for the assessment, and I discovered that he speaks practically no English. Imagine: this man didn't smile at all, was very unwelcoming, and took no notes. Who takes no notes? And he was so dour; it would have cost nothing to smile. And he kept repeating what he thought I said-except that what he thought I said wasn't what I said. I put this down to the fact that he didn't understand me. Why on earth would they get someone to assess me who doesn't speak (or understand) English? And then he would mumble something that he clearly thought was intelligent, and I would have to ask him to repeat it, because I couldn't understand him. It was almost comic-and would have been, if it hadn't been infuriating.
So he said at the end of the session that he believes that my problems stem from the fact that the people in the hospital didn't listen to me, and their ignorance caused the gentamicin toxicity that ruined my life and incapacitated me for life. No shit-I said that at the very beginning of the assessment session!
I can look back on this and laugh, since it is now a day after this ridiculous farce occurred. I think that shrinks become shrinks because they are crazier than the rest of us. In fact, I'm now sure of it!
You know what? I think that (compared to this guy yesterday, at least) I'm normal. And I also think that I can find a way forward without the "help" of someone who never cracks a smile and who doesn't speak the language. A rhesus monkey would have been of more help. AND it would have smiled.
Saturday 1 December 2012
Regress-not progress
I'm glad to see the back of November. It hasn't been the greatest of times for me. I wanted to chart my progress this week-but instead I am charting regress. I turned around this morning and fell over. Just like that - no warning, just no balance, and over I went. I was surprised, to put it mildly! If I'd done this in the living room, I could have crashed into my glass coffee table. That means-I will have to move the table, just to be safe. I thought those days were behind me. Obviously not.
I seem to go through stages: two steps forward, five steps back! I went to my GP on Thursday-because I check in with her every month to let her know how I am progressing-but this week I have been feeling awful: my balance has been very poor, my eyesight has been really bad, and those are clues to the presence of a chest infection. And-when it rains (which is much of the time), and when the weather changes, I find the same difficulty with both balance and vision. On Thursday, my doc took my temperature, and, sure enough, I've got a fever. At least that explains the sudden drop in the gains I've made in two years.
I keep telling myself that this is only a temporary setback, nothing more-but it's really hard for me to believe that. I've always been hopelessly cynical-and I seem to be growing moreso with age!! Sometimes that is a good thing-and sometimes it isn't. Oh, well!!
I've had discussions (some could say arguments) with the people at the Royal London about this infection. One registrar actually rang me back on Friday and advised me to take the antibiotics that were prescribed by my GP. Am I taking them? Well-no, I'm not. I'm supposed to see the immunologist on Wednesday, and I am going to see if I can hold out until then; it seems rather stupid to take this stuff until we actually know what is causing the infection. To me, that is simple logic. To them-well, they have made it very obvious that they would love for me to change hospitals. What the hell-Sofia Grigoriadou is still at the London, so the crippling goes on. And the NHS is closing the medical records department as of January 1st (so the secretaries told me)-so 30+ people will be out of work.
The government is bitching (and so is the media) about companies like Google and Starbucks, who pay minimum company taxes in this country-but nobody moans about the NHS fat cats making all the money while the NHS is falling apart. Huh-one benefit (if you can call it a benefit!) of living in this country for a very long time is that I can be more objective about what is going on than people who just come over for a short while and don't notice anything. You need to live here to see the rot; it's just like anywhere else, really.
So many times I just want to quit: quit the medication, quit the exercises, just basically quit. But I fought so hard to get this far, I force myself to step back, to remember that I didn't get this far to give up now. I can still live a good life-it will just take more effort for me than for others. So what? I'm not dead yet!!
And it will soon be 2013-so I can say goodbye to another rather less than happy year, and work harder to make the next one better. I'm like the Energizer bunny: as long as my batteries hold out, I just keep going!
I seem to go through stages: two steps forward, five steps back! I went to my GP on Thursday-because I check in with her every month to let her know how I am progressing-but this week I have been feeling awful: my balance has been very poor, my eyesight has been really bad, and those are clues to the presence of a chest infection. And-when it rains (which is much of the time), and when the weather changes, I find the same difficulty with both balance and vision. On Thursday, my doc took my temperature, and, sure enough, I've got a fever. At least that explains the sudden drop in the gains I've made in two years.
I keep telling myself that this is only a temporary setback, nothing more-but it's really hard for me to believe that. I've always been hopelessly cynical-and I seem to be growing moreso with age!! Sometimes that is a good thing-and sometimes it isn't. Oh, well!!
I've had discussions (some could say arguments) with the people at the Royal London about this infection. One registrar actually rang me back on Friday and advised me to take the antibiotics that were prescribed by my GP. Am I taking them? Well-no, I'm not. I'm supposed to see the immunologist on Wednesday, and I am going to see if I can hold out until then; it seems rather stupid to take this stuff until we actually know what is causing the infection. To me, that is simple logic. To them-well, they have made it very obvious that they would love for me to change hospitals. What the hell-Sofia Grigoriadou is still at the London, so the crippling goes on. And the NHS is closing the medical records department as of January 1st (so the secretaries told me)-so 30+ people will be out of work.
The government is bitching (and so is the media) about companies like Google and Starbucks, who pay minimum company taxes in this country-but nobody moans about the NHS fat cats making all the money while the NHS is falling apart. Huh-one benefit (if you can call it a benefit!) of living in this country for a very long time is that I can be more objective about what is going on than people who just come over for a short while and don't notice anything. You need to live here to see the rot; it's just like anywhere else, really.
So many times I just want to quit: quit the medication, quit the exercises, just basically quit. But I fought so hard to get this far, I force myself to step back, to remember that I didn't get this far to give up now. I can still live a good life-it will just take more effort for me than for others. So what? I'm not dead yet!!
And it will soon be 2013-so I can say goodbye to another rather less than happy year, and work harder to make the next one better. I'm like the Energizer bunny: as long as my batteries hold out, I just keep going!
Tuesday 27 November 2012
When in doubt, use a hammer
It has been more than just a stressful week. It rained-a lot. When it rains, I have no balance at all-and my vision is even worse than usual. Friday I was in a dreadful mood-and just moped around, dropping things, and trying to stay upright.
My life seems to be about staying upright most of the time! I'm sure that anyone else with balance problems-or, indeed, any kind of disability- knows the meaning of frustration. It seems like I've taken two steps forward and about twelve steps back. So, as it rained most of the weekend, I was understandably very discouraged.
But-this is now two years and four months down the road, so I know what to expect: good days and crap days. I've experienced several of the latter!!
Yesterday, I braved the rain, the balance, the frustration, and went along to a conference about immunology (and Primary Antibody Deficiency). It was interesting, and informative - but, unfortunately, Hilary Longhurst was there, too. She was all phony and ickily friendly-and I just gave her a withering look, but decided to be professional (as much as I can be, under the circumstances). I was very uncomfortable, but decided to always keep in mind that, when (if) the case against Barts Trust comes to court, Hilary will be one of three doctors (witch doctors) who will be called to testify. Let's see how friendly she is when I have her issued with a subpoena!! Thinking about that made me feel less upset.
When this court case is behind me, only then will I be able to move forward. I know it's difficult, but that is the situation as it stands now.
I got home, worn out, at about 6pm. I tackled the remaining turkey (it really does look like I will have turkey until Christmas!! If I don't see a turkey for another year-or eight-I will be happy indeed!!). One thing I also bought was a big bag of nuts. That was another decision I might have considered more than once!!
I've got this nutcracker that works on a ratchet system. I bought this thing years ago, and-unfortunately-used it for something else a couple of years ago, and completely destroyed it! I feel a bit like the person who uses an expensive steak knife to open a can!! Anyway, after about a year of intensive detective work, I found another ratchet one, and I'm taking really good care of it. The problem is, some nutshells just don't want to crack, regardless of how hard you try.
Well, there is nothing like a little ingenuity-especially when combined with brute force! I used the trick from my student days: use a hammer. Of course, you can't exactly haul out a hammer to crack nuts when you have guests-unless they know you very, very well!! But that was fine; I was on my own, and this walnut refused to open-so I grabbed my hammer, gave it a good whack (nearly got my hand in the process!), and there were bits of shell all over the kitchen. I'm still finding nutshells all over the place-but I got the nut, so there you are.
It's like anything else in life that refuses to go your way: when in doubt, use a hammer. They will put that on my tombstone: that, and "she kicked, screamed and swore all the way to the end".
Never give up, and never let anyone else tell you what to do.
My life seems to be about staying upright most of the time! I'm sure that anyone else with balance problems-or, indeed, any kind of disability- knows the meaning of frustration. It seems like I've taken two steps forward and about twelve steps back. So, as it rained most of the weekend, I was understandably very discouraged.
But-this is now two years and four months down the road, so I know what to expect: good days and crap days. I've experienced several of the latter!!
Yesterday, I braved the rain, the balance, the frustration, and went along to a conference about immunology (and Primary Antibody Deficiency). It was interesting, and informative - but, unfortunately, Hilary Longhurst was there, too. She was all phony and ickily friendly-and I just gave her a withering look, but decided to be professional (as much as I can be, under the circumstances). I was very uncomfortable, but decided to always keep in mind that, when (if) the case against Barts Trust comes to court, Hilary will be one of three doctors (witch doctors) who will be called to testify. Let's see how friendly she is when I have her issued with a subpoena!! Thinking about that made me feel less upset.
When this court case is behind me, only then will I be able to move forward. I know it's difficult, but that is the situation as it stands now.
I got home, worn out, at about 6pm. I tackled the remaining turkey (it really does look like I will have turkey until Christmas!! If I don't see a turkey for another year-or eight-I will be happy indeed!!). One thing I also bought was a big bag of nuts. That was another decision I might have considered more than once!!
I've got this nutcracker that works on a ratchet system. I bought this thing years ago, and-unfortunately-used it for something else a couple of years ago, and completely destroyed it! I feel a bit like the person who uses an expensive steak knife to open a can!! Anyway, after about a year of intensive detective work, I found another ratchet one, and I'm taking really good care of it. The problem is, some nutshells just don't want to crack, regardless of how hard you try.
Well, there is nothing like a little ingenuity-especially when combined with brute force! I used the trick from my student days: use a hammer. Of course, you can't exactly haul out a hammer to crack nuts when you have guests-unless they know you very, very well!! But that was fine; I was on my own, and this walnut refused to open-so I grabbed my hammer, gave it a good whack (nearly got my hand in the process!), and there were bits of shell all over the kitchen. I'm still finding nutshells all over the place-but I got the nut, so there you are.
It's like anything else in life that refuses to go your way: when in doubt, use a hammer. They will put that on my tombstone: that, and "she kicked, screamed and swore all the way to the end".
Never give up, and never let anyone else tell you what to do.
Thursday 22 November 2012
Thanksgiving: thanks for...what?
Well, happy Thanksgiving to one and all. I remember all the years of celebrating; the house was always full of people, and everyone ate and drank too much, and swore to never do it again-until Christmas, of course!!
I always celebrated Thanksgiving-even all the years I spent in this country. Whatever happened, in November I celebrated-and there were some really dodgy years, I can tell you!
But-two years ago, I stopped. For me, I had no reasons to give thanks. I couldn't get out of bed without falling over. I couldn't walk. I couldn't wash or dress myself, or cook for myself, or even wipe my backside. That's how bad it was...so when I wrote previously that I wanted to sign up for Dignitas, I wasn't really joking. I went from being active, and in good shape-to being a cripple in one stupid move by incompetent doctors - a move that could have been avoided, and for which I never even received an apology. The only thing that kept me going was the refusal to let them win.
Even last November I found no reason to celebrate. I was still so angry, so filled with hatred, and anxiety, and fear-and hideous depression that has lasted the better part of two years. I was tempted to just quit; I just wanted to stay in bed, not eat, just see how long it would take me to either improve or die. And I have a feeling that many people who are disfigured, or disabled, or whose lives have been destroyed by others (whether accidentally or deliberately) can relate to the way I was feeling.
Now it is two years (and four months) down the road, and I have about 50-55% of my balance, although I am still visually slightly impaired and there are things I cannot do-and things I am told I will never be able to do. But-I am still improving, although it is an uphill battle, and much too slow for my liking. I know all the stories about the brain making new neural pathways, because the balance system is gone forever, etc, etc...that really doesn't make me feel much better.I just have to work harder.
Today is the first Thanksgiving I am celebrating since 2009; I'm going to open a bottle of wine, have a glass or two, and remind myself that I have done a tremendous amount in two years. So what if it took two years? It isn't like I had anything to do in that time (well, I did, but I didn't do anything, because I was too busy trying to survive).
Every once in awhile I meet an acquaintance for a coffee-an accountant who works as a volunteer for the visually impaired. I was telling her about my trip to New York-this was on Monday-and she dismissed it as being "no big deal". That was what she said: it's no big deal, because I was picked up at the airport and I know my way around New York. So she said: "so what?". I was really hurt by that; she completely missed the point. It wasn't "no big deal" - it was a huge, cosmic-sized deal. It took me two years to be able to do that-and in one sentence, she dismissed it as being unimportant. People never cease to amaze me.
So-yes, I can give thanks, because I reached the point where I can travel; I'm not out of the woods when it comes to having both knees sorted out, but I will get there, too. I'm on the mend, even though I'm on the mend at a snail's pace...so I give thanks for never giving up, never quitting (no matter how many times I was tempted), never walking away. And I am dumping the nay sayers and starting over: I don't want people in my life who tell me it's "no big deal". I'm lucky that I have friends who are supportive...
I'm off to be a wino for the day. That won't be difficult; two drinks and I'm not on the floor. I'm under it!
I always celebrated Thanksgiving-even all the years I spent in this country. Whatever happened, in November I celebrated-and there were some really dodgy years, I can tell you!
But-two years ago, I stopped. For me, I had no reasons to give thanks. I couldn't get out of bed without falling over. I couldn't walk. I couldn't wash or dress myself, or cook for myself, or even wipe my backside. That's how bad it was...so when I wrote previously that I wanted to sign up for Dignitas, I wasn't really joking. I went from being active, and in good shape-to being a cripple in one stupid move by incompetent doctors - a move that could have been avoided, and for which I never even received an apology. The only thing that kept me going was the refusal to let them win.
Even last November I found no reason to celebrate. I was still so angry, so filled with hatred, and anxiety, and fear-and hideous depression that has lasted the better part of two years. I was tempted to just quit; I just wanted to stay in bed, not eat, just see how long it would take me to either improve or die. And I have a feeling that many people who are disfigured, or disabled, or whose lives have been destroyed by others (whether accidentally or deliberately) can relate to the way I was feeling.
Now it is two years (and four months) down the road, and I have about 50-55% of my balance, although I am still visually slightly impaired and there are things I cannot do-and things I am told I will never be able to do. But-I am still improving, although it is an uphill battle, and much too slow for my liking. I know all the stories about the brain making new neural pathways, because the balance system is gone forever, etc, etc...that really doesn't make me feel much better.I just have to work harder.
Today is the first Thanksgiving I am celebrating since 2009; I'm going to open a bottle of wine, have a glass or two, and remind myself that I have done a tremendous amount in two years. So what if it took two years? It isn't like I had anything to do in that time (well, I did, but I didn't do anything, because I was too busy trying to survive).
Every once in awhile I meet an acquaintance for a coffee-an accountant who works as a volunteer for the visually impaired. I was telling her about my trip to New York-this was on Monday-and she dismissed it as being "no big deal". That was what she said: it's no big deal, because I was picked up at the airport and I know my way around New York. So she said: "so what?". I was really hurt by that; she completely missed the point. It wasn't "no big deal" - it was a huge, cosmic-sized deal. It took me two years to be able to do that-and in one sentence, she dismissed it as being unimportant. People never cease to amaze me.
So-yes, I can give thanks, because I reached the point where I can travel; I'm not out of the woods when it comes to having both knees sorted out, but I will get there, too. I'm on the mend, even though I'm on the mend at a snail's pace...so I give thanks for never giving up, never quitting (no matter how many times I was tempted), never walking away. And I am dumping the nay sayers and starting over: I don't want people in my life who tell me it's "no big deal". I'm lucky that I have friends who are supportive...
I'm off to be a wino for the day. That won't be difficult; two drinks and I'm not on the floor. I'm under it!
Tuesday 20 November 2012
And by the way...
I'm off to the storage unit tomorrow. I forgot to mention that; it's raining today, and when it rains, or when it's dark, I turn into a pumpkin.
The storage unit is highly entertaining to someone with no balance-especially since there are boxes piled up to the ceiling (about twelve feet high). I've already found huge amounts of stuff I can give away (or throw away).
Anyone want a thousand books? And, yes, I read them all. I never throw out a book-in fact, I rarely throw out anything. No wonder I've got a huge storage unit stuffed with-well, stuff-not to mention those six woks!!
The storage unit is highly entertaining to someone with no balance-especially since there are boxes piled up to the ceiling (about twelve feet high). I've already found huge amounts of stuff I can give away (or throw away).
Anyone want a thousand books? And, yes, I read them all. I never throw out a book-in fact, I rarely throw out anything. No wonder I've got a huge storage unit stuffed with-well, stuff-not to mention those six woks!!
On the fast-track to Hell
It's a case of "go to Hell, do not pass Go, do not collect two hundred dollars"-or pounds, or euros, or yen, or whatever. This is what happens when you forget to use the brakes between brain and mouth!
I've never been one for evangelizing-proselytizing-recruiting-I've never had time for the people who can't wait to tell you how they became Christians, or how they found Jesus Christ, or whatever. I just won't do it, and I don't mind people who do, as long as they leave me alone and don't accost me in the street. My beliefs have always been pretty private - well, except for blogging, of course!!
I remember being bribed by a neighbor to come to church with her. This was years ago, and I needed work done in the flat in East London (really, it needed demolishing, it was that bad; a couple of grenades would have done the trick nicely), and she said that her friend would do the work for free. All I had to do was come with her to Sunday service. So, fool that I was, I went. Two hours of screaming from the born-again minister, telling us we were all going to Hell if we didn't listen to him, and that God is a jealous and angry God, and so on, and so forth, and by the end of the service I wondered if my hearing would ever return to normal! When Liz asked me after the service what I thought (I can use her real name, since every third person in this country seems to be called Elizabeth. Even some of the guys), I said it was loud. And I questioned this fundamentalist belief that God is jealous - of whom, exactly? And why??
The outcome was that Liz told me she couldn't be friends with me, because I was a blasphemer. Pardon?? Oh, well...I question everything that makes no sense-and that stuff made no sense. At least, my ears stopped ringing, my hearing returned, and the constant badgering to come to church and repent finally stopped. And the work on my flat was finished...
So, I'm going to Hell because I have decided to stop going to the Baptist church. This is after months of sitting on the fence, feeling some guilt (call it Presbyterian/Catholic/Jewish/anyone else guilt, and I cover all bases. I'll just be damned by everybody), because church people kept stopping me in the street and telling me they are praying for me. I always want to know: for what reason? But nevermind, it was nice of them; they probably wanted another member of the church. Whatever!!
From the time I was a child and religion was shoved down my throat (oh, come on, my mother told me when I was little where babies come from - virgin birth?? Excuse me??), I questioned everything. It all sounded like a load of crap to me (very sorry to all my Christian friends, and anyone who is religious who is reading this, but that's the case), and I wasn't buying it.
When the Baptists kept saying how JC died for our sins (didn't he have any sins of his own?), and how only people who love and worship JC as the saviour, etc, will be loved by God and get into heaven (assuming, of course, that there is one), I finally decided that I don't buy that stuff. That means that the vast majority of the world's population are on God's shitlist because they believe something else. And, frankly, I find that offensive. That is why wars are started: in the name of something (or someone) that makes killing justifiable. Genocide is never justifiable, in any name.
Am I an atheist, or an agnostic? No, I'm not. I believe in a higher power, but-I believe that power is genderless, isn't male, or female, or black, or white, or is a Big Mac, or whatever. And I don't believe that power is jealous, or angry - I believe that power is accessible to everyone, regardless of belief system, religion, or any other characteristic used to separate people.
What makes me angry is the fact that religion is such an excuse to harm others. So I'm going to Hell, most definitely, because I won't conform to others' belief systems. I suppose that makes me a Unitarian - if I have to put a label on myself. Perhaps it just makes me someone who just wants to be a decent human being. One who falls over a lot. And I don't half swear when I do!!
I've never been one for evangelizing-proselytizing-recruiting-I've never had time for the people who can't wait to tell you how they became Christians, or how they found Jesus Christ, or whatever. I just won't do it, and I don't mind people who do, as long as they leave me alone and don't accost me in the street. My beliefs have always been pretty private - well, except for blogging, of course!!
I remember being bribed by a neighbor to come to church with her. This was years ago, and I needed work done in the flat in East London (really, it needed demolishing, it was that bad; a couple of grenades would have done the trick nicely), and she said that her friend would do the work for free. All I had to do was come with her to Sunday service. So, fool that I was, I went. Two hours of screaming from the born-again minister, telling us we were all going to Hell if we didn't listen to him, and that God is a jealous and angry God, and so on, and so forth, and by the end of the service I wondered if my hearing would ever return to normal! When Liz asked me after the service what I thought (I can use her real name, since every third person in this country seems to be called Elizabeth. Even some of the guys), I said it was loud. And I questioned this fundamentalist belief that God is jealous - of whom, exactly? And why??
The outcome was that Liz told me she couldn't be friends with me, because I was a blasphemer. Pardon?? Oh, well...I question everything that makes no sense-and that stuff made no sense. At least, my ears stopped ringing, my hearing returned, and the constant badgering to come to church and repent finally stopped. And the work on my flat was finished...
So, I'm going to Hell because I have decided to stop going to the Baptist church. This is after months of sitting on the fence, feeling some guilt (call it Presbyterian/Catholic/Jewish/anyone else guilt, and I cover all bases. I'll just be damned by everybody), because church people kept stopping me in the street and telling me they are praying for me. I always want to know: for what reason? But nevermind, it was nice of them; they probably wanted another member of the church. Whatever!!
From the time I was a child and religion was shoved down my throat (oh, come on, my mother told me when I was little where babies come from - virgin birth?? Excuse me??), I questioned everything. It all sounded like a load of crap to me (very sorry to all my Christian friends, and anyone who is religious who is reading this, but that's the case), and I wasn't buying it.
When the Baptists kept saying how JC died for our sins (didn't he have any sins of his own?), and how only people who love and worship JC as the saviour, etc, will be loved by God and get into heaven (assuming, of course, that there is one), I finally decided that I don't buy that stuff. That means that the vast majority of the world's population are on God's shitlist because they believe something else. And, frankly, I find that offensive. That is why wars are started: in the name of something (or someone) that makes killing justifiable. Genocide is never justifiable, in any name.
Am I an atheist, or an agnostic? No, I'm not. I believe in a higher power, but-I believe that power is genderless, isn't male, or female, or black, or white, or is a Big Mac, or whatever. And I don't believe that power is jealous, or angry - I believe that power is accessible to everyone, regardless of belief system, religion, or any other characteristic used to separate people.
What makes me angry is the fact that religion is such an excuse to harm others. So I'm going to Hell, most definitely, because I won't conform to others' belief systems. I suppose that makes me a Unitarian - if I have to put a label on myself. Perhaps it just makes me someone who just wants to be a decent human being. One who falls over a lot. And I don't half swear when I do!!
Friday 16 November 2012
Once more, into the fray!
I will stick my neck out-as usual-and say that someone needs to pass a law that bans butt-cracks in public. Really! There seems to be a trend, and not only in this country: boys (and young men, who really should know better) are walking around with their jeans/trousers with crotch down to their knees and their butt-crack showing for all to see. It's nice for them, I'm sure, but very gross for the rest of us!
Now, am I wrong in saying that nobody really wants to see someone else's butt-crack being flashed in public-especially before breakfast!!-because it does definitely put us off our food? I've been behind guys who have backsides full of acne, or just really unattractive-and, guys, all the hair! It isn't a rose bush you are growing, you know!!
Add to that the fact that these guys are typically very ugly-and very repulsive. Women are far too sensible to show off like that-unless, of course, they come from Essex. And guys who show off their ugly, fat, hairy, acne ridden butt-cracks aren't attractive. In fact, they are decidedly un-sexy. There is nothing sexy about having your trouser crotch hanging to your knees and your butt-crack flashing those of us who haven't eaten. It's only sexy to people in Essex-not to anyone else-but then, those people have absolutely no taste anyway.
So, guys, use a belt. Pull up those trousers, stop flashing us. Wear a mask. In fact, wear a paper bag over your heads. On second thought, make it a plastic bag! Have sympathy for people with weak stomachs.
You can see what kind of a week I've had! I did go to the gym, and to see my friend the acupuncturist (yesterday); I've had to fight with my lawyer to get her moving on this court case, too. I seem to be fighting a lot in that area-but it's better to stand up for yourself and fight than be a wimp and have people walk all over you!!
It has been three weeks since I returned from my trip to New York-and it feels like I never left. It's back to business as usual. Would I go back if I could? Are you kidding? You bet I would-but the prospect seems very unlikely. So I have to learn - as my friend NJ advised me - to find something positive and to focus on that. I can offer that good advice to everyone-because otherwise you drive yourself into depression, and I know that from experience. I've spent long enough being depressed. It doesn't change anything, it just wastes your life. All you get is older. And you feel older, too.
I'm getting ready for my bionic knee, and I guess that will happen within the next few weeks (allegedly). I think I have until the middle of December to get very strong-so that is why I'm doing the gym four days a week. I'm not feeling bionic; I'm feeling knackered!! I was in better shape before the gentamicin, of course-now I'm like a big lump on the treadmill. That will change in four weeks!
All this exercise-I'll need to go into the hospital. I'll need the rest! I did ask Mr. Skinner to put me on morphine until Easter, so I don't feel any pain-he just laughed at me. Well-it was a good idea, anyway.
Now, am I wrong in saying that nobody really wants to see someone else's butt-crack being flashed in public-especially before breakfast!!-because it does definitely put us off our food? I've been behind guys who have backsides full of acne, or just really unattractive-and, guys, all the hair! It isn't a rose bush you are growing, you know!!
Add to that the fact that these guys are typically very ugly-and very repulsive. Women are far too sensible to show off like that-unless, of course, they come from Essex. And guys who show off their ugly, fat, hairy, acne ridden butt-cracks aren't attractive. In fact, they are decidedly un-sexy. There is nothing sexy about having your trouser crotch hanging to your knees and your butt-crack flashing those of us who haven't eaten. It's only sexy to people in Essex-not to anyone else-but then, those people have absolutely no taste anyway.
So, guys, use a belt. Pull up those trousers, stop flashing us. Wear a mask. In fact, wear a paper bag over your heads. On second thought, make it a plastic bag! Have sympathy for people with weak stomachs.
You can see what kind of a week I've had! I did go to the gym, and to see my friend the acupuncturist (yesterday); I've had to fight with my lawyer to get her moving on this court case, too. I seem to be fighting a lot in that area-but it's better to stand up for yourself and fight than be a wimp and have people walk all over you!!
It has been three weeks since I returned from my trip to New York-and it feels like I never left. It's back to business as usual. Would I go back if I could? Are you kidding? You bet I would-but the prospect seems very unlikely. So I have to learn - as my friend NJ advised me - to find something positive and to focus on that. I can offer that good advice to everyone-because otherwise you drive yourself into depression, and I know that from experience. I've spent long enough being depressed. It doesn't change anything, it just wastes your life. All you get is older. And you feel older, too.
I'm getting ready for my bionic knee, and I guess that will happen within the next few weeks (allegedly). I think I have until the middle of December to get very strong-so that is why I'm doing the gym four days a week. I'm not feeling bionic; I'm feeling knackered!! I was in better shape before the gentamicin, of course-now I'm like a big lump on the treadmill. That will change in four weeks!
All this exercise-I'll need to go into the hospital. I'll need the rest! I did ask Mr. Skinner to put me on morphine until Easter, so I don't feel any pain-he just laughed at me. Well-it was a good idea, anyway.
Monday 12 November 2012
Notes from an EX-cripple
I understand-and not for the first time-that I have gone about everything the wrong way-or, rather, the least productive way. For two years (and three months or thereabouts) I have felt like both a victim and a cripple. And that hasn't served me at all. That has only made me feel more and more depressed, alone, isolated. I can tell you from experience that these feelings don't help the healing process. In fact, they impede it.
It's funny; when I was diagnosed in late 2004 with CVID, and I was informed that the lack of antibodies was genetic (and therefore incurable), I didn't feel any anger toward my parents. I felt only relief, because at last I knew why I have been rather less than robust my entire life. It didn't matter whose family was "at fault" - nobody knew that CVID even existed. So blame was useless. At least I knew I had been handed a poisoned chalice, as it were.
Two years ago, the matter was entirely different. I ended up with no vestibular mechanism because the doctors in charge of my care were incompetent, uncaring, and refused to listen to me...as it turns out, I was right, but they still ruined my life. There was never an apology-but they can shove their apology. I was angry, frightened, bitter, and very, very depressed.
Depression is now classified as a "mood disorder". I know this because Matt, my consultant, puts all diagnoses on the first page of every letter he writes to my GP. He now has included "mood disorder". I can say that this really wound me up; it seems to me that if someone else's incompetence - indeed, malpractice-destroys one's life, the patient would normally be depressed. You are unable to get out of bed without falling over for 18 months; you are unable to wash yourself without help, to cook for yourself, to wipe your own behind, to walk...all this could have (and should have) been avoided. If this doesn't make you angry, frightened, depressed and bitter-there is definitely something wrong with you!!
I thought of myself as a victim of medical stupidity and malpractice (which is true), as a cripple (which was the case) - and then I decided to go to New York and see how well I fared. If I got sick, if I got knocked over-well, then I got sick, or knocked over. But at least, I forced myself out of my comfort zone and took the risk. I took the risk; that was the important thing.
I didn't see everything (or everyone) I wanted to see; I didn't go everywhere, or do everything, but I didn't sit in the hotel every day, and I was a bit afraid that I would go all that way and be afraid to go anywhere. Even though I had terrible jet lag for the first four days, I still pushed myself to get out and walk around-to walk the mile and a half to Diane's house, to walk to the park...I walked. And with only 50-55% (55% on a good day) of my balance working (thanks to all the exercises I've been doing over the last two years), I didn't fall over. I was wobbly, and I staggered a few times, but I didn't fall over. And I could never have done this journey six months ago-so that proves that the nerves in my legs are starting to take over some of the work of the vestibular system that was completely destroyed.
Too bad that nobody has figured out a way to transplant a chicken's vestibular system-since chickens are the only species with a vestibular system that regenerates!! LOL-I can see myself clucking...
I don't label myself as a cripple anymore. I think that is so damaging to self-confidence and self-esteem. I feel that those labels (crippled, completely disabled, etc) do more harm than good. I know that I might never get any better than I am now-but I think that, with a lot of effort and a lot of time, I will get more back. It takes patience, a ton of hard work, a lot of swearing, dedication-and a strong belief in myself. And that is what I brought back with me from New York. All the museums will wait for me to return.
I went back to the gym on Saturday. Eeek! I worked the upper body-and I saw quite clearly that I need to work really hard, because I've got muscles the size of a sparrow's kneecaps (and about as strong as a few overcooked noodles). Yesterday I was too sore to do much of anything, but today I am back in the gym.
I will be working with a trainer twice a week, and I will be working in the gym on my own an additional two times a week. I get to have my bionic knee within the next four-five weeks, so I need to really push myself. I cannot afford to fall over and damage anything-and I will have to use crutches for a few weeks, which will be highly amusing, given that I have no balance system as it is.
This will be a real challenge coming up-but I'm still here, because I have met every challenge in my life (and there have been more of those than you can possibly imagine), and I refuse to back down or roll over and give up. I didn't come this far, fight this hard, endure this much, only to quit now.
Ciao for now, I am off to the gym. If nothing else, I will be taller!!
It's funny; when I was diagnosed in late 2004 with CVID, and I was informed that the lack of antibodies was genetic (and therefore incurable), I didn't feel any anger toward my parents. I felt only relief, because at last I knew why I have been rather less than robust my entire life. It didn't matter whose family was "at fault" - nobody knew that CVID even existed. So blame was useless. At least I knew I had been handed a poisoned chalice, as it were.
Two years ago, the matter was entirely different. I ended up with no vestibular mechanism because the doctors in charge of my care were incompetent, uncaring, and refused to listen to me...as it turns out, I was right, but they still ruined my life. There was never an apology-but they can shove their apology. I was angry, frightened, bitter, and very, very depressed.
Depression is now classified as a "mood disorder". I know this because Matt, my consultant, puts all diagnoses on the first page of every letter he writes to my GP. He now has included "mood disorder". I can say that this really wound me up; it seems to me that if someone else's incompetence - indeed, malpractice-destroys one's life, the patient would normally be depressed. You are unable to get out of bed without falling over for 18 months; you are unable to wash yourself without help, to cook for yourself, to wipe your own behind, to walk...all this could have (and should have) been avoided. If this doesn't make you angry, frightened, depressed and bitter-there is definitely something wrong with you!!
I thought of myself as a victim of medical stupidity and malpractice (which is true), as a cripple (which was the case) - and then I decided to go to New York and see how well I fared. If I got sick, if I got knocked over-well, then I got sick, or knocked over. But at least, I forced myself out of my comfort zone and took the risk. I took the risk; that was the important thing.
I didn't see everything (or everyone) I wanted to see; I didn't go everywhere, or do everything, but I didn't sit in the hotel every day, and I was a bit afraid that I would go all that way and be afraid to go anywhere. Even though I had terrible jet lag for the first four days, I still pushed myself to get out and walk around-to walk the mile and a half to Diane's house, to walk to the park...I walked. And with only 50-55% (55% on a good day) of my balance working (thanks to all the exercises I've been doing over the last two years), I didn't fall over. I was wobbly, and I staggered a few times, but I didn't fall over. And I could never have done this journey six months ago-so that proves that the nerves in my legs are starting to take over some of the work of the vestibular system that was completely destroyed.
Too bad that nobody has figured out a way to transplant a chicken's vestibular system-since chickens are the only species with a vestibular system that regenerates!! LOL-I can see myself clucking...
I don't label myself as a cripple anymore. I think that is so damaging to self-confidence and self-esteem. I feel that those labels (crippled, completely disabled, etc) do more harm than good. I know that I might never get any better than I am now-but I think that, with a lot of effort and a lot of time, I will get more back. It takes patience, a ton of hard work, a lot of swearing, dedication-and a strong belief in myself. And that is what I brought back with me from New York. All the museums will wait for me to return.
I went back to the gym on Saturday. Eeek! I worked the upper body-and I saw quite clearly that I need to work really hard, because I've got muscles the size of a sparrow's kneecaps (and about as strong as a few overcooked noodles). Yesterday I was too sore to do much of anything, but today I am back in the gym.
I will be working with a trainer twice a week, and I will be working in the gym on my own an additional two times a week. I get to have my bionic knee within the next four-five weeks, so I need to really push myself. I cannot afford to fall over and damage anything-and I will have to use crutches for a few weeks, which will be highly amusing, given that I have no balance system as it is.
This will be a real challenge coming up-but I'm still here, because I have met every challenge in my life (and there have been more of those than you can possibly imagine), and I refuse to back down or roll over and give up. I didn't come this far, fight this hard, endure this much, only to quit now.
Ciao for now, I am off to the gym. If nothing else, I will be taller!!
Saturday 10 November 2012
Ode to the big one
It hit me on Wednesday: I'm in for yet another surgical procedure, and this one is going to be one humdinger of an op! Is everyone involved a wee bit nervous? Well-not as nervous as I am!!!
Wednesday was one of those awful days-and I wasn't thinking about anything except self-preservation. Am I scared? It's more appropriate to say that I am terrified. First of all, falling down flights of stairs and landing on my knees for eighteen months (post gentamicin) has torn the cartilage in my left knee, so that will need to be repaired at some stage. But the big one is the right knee, which has been rather destroyed. It's no fun falling and landing on one knee, as anyone who has done so (especially repeatedly) will testify.
The worst part is that Mr. Skinner has decided to do this before Christmas. So I had to run around and get information for the RNOH Stanmore, because there is no time to write letters back and forth. I just about had a stroke because of the obstinacy and the total lack of cooperation on the part of my "team" at the Royal London. Was it necessary for them to be so obstructive? No-but they were. Of course, I do know that, with the court case coming, everyone would dearly like me to change hospitals. I won't do that; they will have to treat me very carefully, and I am unwilling to start over somewhere else. I could be jumping from the frying pan into the fire-I'm not that stupid (hopefully)!!
It took endless phone calls and two days before all the information was with the pre-admission people at Stanmore. I understand that I am being fast-tracked; this is due to the CVID, and the bilateral vestibular hypofunction (destruction of the balance mechanism, I just wanted to show off. Scuse me for that!!LOL). While my lungs are still okay and I am chest-infection free (someone knock on a piece of wood, please), Mr. S wants to replace the knee. And I have less time than I thought!!
Mr. S said "before Christmas"-this Christmas- so I thought, okay, I've probably got until mid-December to get to the gym every day (no excuses this time!!) and exercise my little socks off. I might not have that long before I find myself in the hospital. And, since Mr. Skinner's office will liaise with the Royal London and the London Chest Hospital-and they are far more efficient that these plonkers-it may be sooner, rather than later. No wonder I was a bit depressed and overwhelmed. How am I going to handle crutches when I have no balance mechanism? Nobody has thought about that yet!!
I went along to the Neurology Hospital at Queen Square yesterday morning. I was supposed to finish vestibular physiotherapy in May-but I was in the hospital, the physiotherapist moved on, everyone was very busy-and yesterday I saw Ben, the final physio in my treatment schedule, for the last time. He checked me out and said that I am still improving, although very slowly now. He gave me a few more killer exercises, and told me that I am on my own now. It's funny: I saw a vestibular physio (four times) at the Royal London, and she was useless. I saw one at my GP's surgery (four times) and she was useless, too. But the people at the Neurology Hospital are the very best-that is why there is such a huge waiting list. If I hadn't gone there, I would never have come as far as I have. And I have to go the rest of the way by myself. It's a little daunting-but I will step up and do the work. Is there an alternative!
Ben advised me to get to the gym as often as I can, and to work the muscles in my legs until they are rock solid. He also suggested that I strengthen my arm and shoulder muscles; at the moment, they are about the size of a sparrow's kneecaps. So I have some homework (and gymwork) to do!
Well, this is just another in a series of huge challenges. My life seems to have been a series of huge challenges! So I've got another battle on my hands-and now, it's off to the gym.
I did ask Mr. Skinner on Wednesday to knock me out with drugs-and to keep me on drugs until there is no more pain-until, maybe, Easter. He just laughed at me. Well, I should get credit for trying!!
Wednesday was one of those awful days-and I wasn't thinking about anything except self-preservation. Am I scared? It's more appropriate to say that I am terrified. First of all, falling down flights of stairs and landing on my knees for eighteen months (post gentamicin) has torn the cartilage in my left knee, so that will need to be repaired at some stage. But the big one is the right knee, which has been rather destroyed. It's no fun falling and landing on one knee, as anyone who has done so (especially repeatedly) will testify.
The worst part is that Mr. Skinner has decided to do this before Christmas. So I had to run around and get information for the RNOH Stanmore, because there is no time to write letters back and forth. I just about had a stroke because of the obstinacy and the total lack of cooperation on the part of my "team" at the Royal London. Was it necessary for them to be so obstructive? No-but they were. Of course, I do know that, with the court case coming, everyone would dearly like me to change hospitals. I won't do that; they will have to treat me very carefully, and I am unwilling to start over somewhere else. I could be jumping from the frying pan into the fire-I'm not that stupid (hopefully)!!
It took endless phone calls and two days before all the information was with the pre-admission people at Stanmore. I understand that I am being fast-tracked; this is due to the CVID, and the bilateral vestibular hypofunction (destruction of the balance mechanism, I just wanted to show off. Scuse me for that!!LOL). While my lungs are still okay and I am chest-infection free (someone knock on a piece of wood, please), Mr. S wants to replace the knee. And I have less time than I thought!!
Mr. S said "before Christmas"-this Christmas- so I thought, okay, I've probably got until mid-December to get to the gym every day (no excuses this time!!) and exercise my little socks off. I might not have that long before I find myself in the hospital. And, since Mr. Skinner's office will liaise with the Royal London and the London Chest Hospital-and they are far more efficient that these plonkers-it may be sooner, rather than later. No wonder I was a bit depressed and overwhelmed. How am I going to handle crutches when I have no balance mechanism? Nobody has thought about that yet!!
I went along to the Neurology Hospital at Queen Square yesterday morning. I was supposed to finish vestibular physiotherapy in May-but I was in the hospital, the physiotherapist moved on, everyone was very busy-and yesterday I saw Ben, the final physio in my treatment schedule, for the last time. He checked me out and said that I am still improving, although very slowly now. He gave me a few more killer exercises, and told me that I am on my own now. It's funny: I saw a vestibular physio (four times) at the Royal London, and she was useless. I saw one at my GP's surgery (four times) and she was useless, too. But the people at the Neurology Hospital are the very best-that is why there is such a huge waiting list. If I hadn't gone there, I would never have come as far as I have. And I have to go the rest of the way by myself. It's a little daunting-but I will step up and do the work. Is there an alternative!
Ben advised me to get to the gym as often as I can, and to work the muscles in my legs until they are rock solid. He also suggested that I strengthen my arm and shoulder muscles; at the moment, they are about the size of a sparrow's kneecaps. So I have some homework (and gymwork) to do!
Well, this is just another in a series of huge challenges. My life seems to have been a series of huge challenges! So I've got another battle on my hands-and now, it's off to the gym.
I did ask Mr. Skinner on Wednesday to knock me out with drugs-and to keep me on drugs until there is no more pain-until, maybe, Easter. He just laughed at me. Well, I should get credit for trying!!
Thursday 8 November 2012
The bread and water diet
Tuesday was, indeed, a very bad day for America-and Americans-and, by extension, for the rest of the world. I had a strong feeling that Odious Obama would be re-elected-better the devil you know than the devil you don't- even if this lying git will "take his people forward"-over the nearest cliff, no doubt. Obama is to the USA what Tony Blair was to Britain: a modern-day Nero, fiddling while his country burns, and stealing and spending as much of the taxpayers' money as he could get his hands on.
Well-I said we will all be on bread and water, so I think we should all learn how to bake!! And I have beaten the subject of this pathetic election to death-except to wonder how we could allow a billion dollars to be spent on re-electing a dirtbag. In fact, how could we allow a billion dollars to be spent on electing anyone?? The mind boggles; that billion could have gone into healthcare, housing the homeless (nobody in America should be allowed to be homeless!!), and a dozen other things that need help. It is just plain wrong. Am I the only one who thinks this is not just wrong, but obscene?
We will know who bought and paid for Obama soon enough-when we know the identities of his cabinet, his advisors, and, of course, when we see what deals he tries to make. Whoever bought him will soon be in his face, expecting to be paid. Too bad that we are the ones who suffer.
So, enough doom and gloom...Tuesday was bad enough. For me, Wednesday wasn't too great, either.I went to Stanmore, only to discover that I do need double knee surgery. What a bummer!! This is all from the times I fell down two flights of stairs (due to the gentamicin-so much for Sofia Grigoriadou, whom I now have nicknamed 007-licensed to kill), and from 18 months of falling over, knees first much of the time. I have completely destroyed one knee and have torn the cartilage in the other.
I rang my solicitor after the appointment. She was very sympathetic, but also a bit pleased, I think. The longer Barts messes around, the more things go wrong because of the incompetence of the three doctors who should have known better, the higher the settlement will be-so my lawyer and I are both hearing the sound of ker-ching. I'm going to hit them for as much as I can get out of them, and I'm not going to settle for a pittance. Too bad we don't have class action suits in this country!!
My consultant, Mr. Skinner, wants to do the surgery (the major one first) before Christmas. As he pointed out, while my various conditions are relatively stable, we can really make me hurt (no, he didn't say that-I did!). I had a little cry when I got home yesterday-but I have approximately four weeks (I hope) to really get in shape for surgery. On the bright side: once I have healed completely (six months or so), as long as I don't fall on my knee again I should feel a lot better.
How about that: I will be bionic by Christmas!! Pass the wine. And the Jack Daniel's (not together!!!!).
Well-I said we will all be on bread and water, so I think we should all learn how to bake!! And I have beaten the subject of this pathetic election to death-except to wonder how we could allow a billion dollars to be spent on re-electing a dirtbag. In fact, how could we allow a billion dollars to be spent on electing anyone?? The mind boggles; that billion could have gone into healthcare, housing the homeless (nobody in America should be allowed to be homeless!!), and a dozen other things that need help. It is just plain wrong. Am I the only one who thinks this is not just wrong, but obscene?
We will know who bought and paid for Obama soon enough-when we know the identities of his cabinet, his advisors, and, of course, when we see what deals he tries to make. Whoever bought him will soon be in his face, expecting to be paid. Too bad that we are the ones who suffer.
So, enough doom and gloom...Tuesday was bad enough. For me, Wednesday wasn't too great, either.I went to Stanmore, only to discover that I do need double knee surgery. What a bummer!! This is all from the times I fell down two flights of stairs (due to the gentamicin-so much for Sofia Grigoriadou, whom I now have nicknamed 007-licensed to kill
I rang my solicitor after the appointment. She was very sympathetic, but also a bit pleased, I think. The longer Barts messes around, the more things go wrong because of the incompetence of the three doctors who should have known better, the higher the settlement will be-so my lawyer and I are both hearing the sound of ker-ching. I'm going to hit them for as much as I can get out of them, and I'm not going to settle for a pittance. Too bad we don't have class action suits in this country!!
My consultant, Mr. Skinner, wants to do the surgery (the major one first) before Christmas. As he pointed out, while my various conditions are relatively stable, we can really make me hurt (no, he didn't say that-I did!). I had a little cry when I got home yesterday-but I have approximately four weeks (I hope) to really get in shape for surgery. On the bright side: once I have healed completely (six months or so), as long as I don't fall on my knee again I should feel a lot better.
How about that: I will be bionic by Christmas!! Pass the wine. And the Jack Daniel's (not together!!!!).
Monday 5 November 2012
One thing I forgot to mention
I forgot to say happy Guy Fawkes Day! It's Bonfire Night tonight...in honor of Guy Fawkes, who did his best to blow up Parliament (how prescient of him, even though he failed!). Ah, but there is still time......
Say hello to Black Tuesday
It will be Black Tuesday tomorrow: it's the day that Odious Obama will be re-elected to spend another four years doing nothing but taking taxpayer-funded vacations with his taxpayer-funded (read expensive) family, preening like a sick peacock, flexing his muscles for the media (scary at best; vomit-inducing at worst), and generally doing nothing but lying and taking credit for things he didn't do. A typical politician: a liar, a hypocrite, and a useless prat.
It's Black Tuesday: he can spend the next four years with his head up his ass-just like he spent the last four years!!! This is what happens when voters are left to choose the (perceived) lesser of two evils-or, better the devil you know than the devil you don't. And we still haven't learned our lessons!!!Sad, isn't it?
Britain and the United States have one thing in common (apart from a similar language, that is): we have leadership that is absolute crap. Apart from Maggie Thatcher, Britain hasn't had a strong leader since Churchill. And we haven't had a strong leader since Franklin D Roosevelt. I don't count Kennedy, a man who couldn't keep it in his pants (and ditto Clinton, who will forever be remembered for his pointing to the cameras and telling a huge, cosmic-sized whopper about Monica Lewinsky-what a blatant liar!!!).
Then there is Barack the Useless, who calls himself a man of the people. Whose people?? Not mine (Americans), that is for sure. He was quick to take credit for Bin Laden, when the credit belonged to the Special Forces - Obama had nothing to do with any of it. What a lying, disgusting pile of crap he is for doing that!! But where was he when everything else (like the banking fiascos) took place? Playing golf? On the beach? Taking yet another vacation? Being smarmy and smug for the cameras, and placing the blame on anyone he could find? I say: it was the last choice. And this is the stinking pile of shite we are going to put back into the Oval Office for another four years of the same.
Obama will do to my country what the hated Tony Blair did to this one: dig a hole and dump us so far down it that it will take years (decades, even) to pull ourselves out. Blair screwed his people something rotten-and Obama is doing the same. Our two countries have something else in common: we never learn, do we?
We need to boot this prat out of the White House before he does any more damage. I say give someone else a chance-and if he is useless, get rid of him in four years and get someone else into power. I think that is called democracy: we have a vote, so why not use it?
Obama will go down in history as being mediocre, at best-and being a useless, lying piece of crap at worst. He is our first black president-and he will probably be the last for a very, very long time. That will be his legacy: ruining the chances for any other black people who just might be - capable (unlike Obama)!! Some legacy, indeed. Too bad Colin Powell didn't want the job; I would have voted for him in a heartbeat.
Britain has Cameron and Clegg-talk about useless and hopeless, and out of touch!! - and we have Obama. What have any of us done to deserve them? Mind you, I suppose we get the government we deserve, after all. We need to all start thinking before we elect idiots like these; we need to start voting with our feet.
In four years - unless there is a nuclear war, which will, of course, be Obama's fault - I will be able to say I told you so!! By then, all Americans (except Obama and his friends) will be on a diet of bread and water, because the state of the economy will be that bad. Well-at least we will all be thin-very, very thin.
I am, of course, joking about nuclear war (or am I?). But I will still be able to do something I never do: to everyone who voted for Barack the Useless, I will say: I told you so!!!
Meanwhile, I am stocking up on bread, just in case!
Saturday 3 November 2012
Oh, and another thing!! Again!!
I hasten to add that I am neither Democrat (I used to be, in my distant youth) or Republican. I'm a registered Independent, so I can vote for the person I think will do the best job-or, as in recent years, the less terrible job!!
Now, I just want to leave town - I wonder if all the islands everywhere have been taken!! Probably-everyone else is fed up, too.
Now, I just want to leave town - I wonder if all the islands everywhere have been taken!! Probably-everyone else is fed up, too.
Vote for the mouse
Ten days ago I was in New York-standing at Ground Zero, staring up at the Freedom Tower; I walked around Wall Street and Chambers Street, and when I finished at the memorial, lit a candle at St. Paul's Church, and had my little walkabout, I went into the subway tunnel without a second thought. I very nearly stayed days longer. Imagine- I would have been able to see the destruction of Hurricane Sandy. I predict that Sandy will not be on the top list of baby's names for a long time to come!!
This hasn't been an easy week; I have had severe balance issues, and my eyes went completely funny (to use a technical term!)-I think I might have picked up a bug on the plane, which wouldn't be a surprise, since that is the best place to get something nasty (except, of course, for hospitals). I'm on the mend now, I think.
Now that the media has criticized the handling of Sandy for nearly a week (as if those idiots could do any better!), we are on to the Presidential election. Do I have an opinion? Come on, is the Pope Catholic??
I never liked Obama. I didn't trust him, I didn't think he had any experience, and my feelings have been completely verified, as far as I am concerned. The second he took credit for the Bin Laden capture-what a set of stones the man has!!-I thought he could never be trusted. He offended his people, he seriously insulted the security forces (who spent so much time and effort, and whose bravery is without question-unlike the president), and I was irked, but not surprised. Odious Obama, Barack the Useless-he has turned out to be rubbish in the White House.
And he will probably get in for a second term, because people will think of him as the lesser of two evils-or, better the devil you know than the devil you don't-rather than someone who is capable of doing a good job - which he clearly is not. I'm 100% with the people who say he is a liar, a hypocrite, cannot be trusted, and is a man of the people-but only a small percentage of the people. I think Obama will lead the people of America (and probably the rest of the Western world) over the edge of a cliff.
We can, of course, vote someone out of office after four years. We can tell him to get his tail out of the White House by going to vote and letting his opposition put his money where his mouth is. The beauty of a democracy is that, if someone makes a million promises and doesn't even start to deliver in four years (but spends his time campaigning and taking holidays, and posing endlessly for photo ops), we can send him packing just by saying no.
I think we need to give Romney a chance-although I'm not crazy about him, either. If he fails to deliver, or even begin to deliver, he needs to know not to get too cozy in Pennsylvania Avenue, because he will be out on his behind in the next election.
Personally, I would have voted for the mouse if I could have written in a vote: Minnie Mouse, not Mickey Mouse. This country had Maggie Thatcher, a strong leader if there ever was one-she had more balls than all the politicians in Whitehall (easy to do, since they are a load of wusses anyway). She didn't pussyfoot around, she called it as she saw it, and scared the living crap out of all the people around her.
Get rid of Pinky and Perky (Cameron and Clegg, the useless duo in charge of the UK), get rid of Barack the Useless, and put women in charge. We don't do all the chest thumping, or the testosterone-induced posturing and basic BS - we just get the job done.
And do we ever have jobs that need doing!! Blair and Bush drove both countries to near-destruction. We need people who are honest, and ethical, and very ballsy to pull both nations out of the toilet.
Then again, saying "honest" and "ethical" in the same sentence as "politician" - hmmm...we are kind of screwed, aren't we??
This hasn't been an easy week; I have had severe balance issues, and my eyes went completely funny (to use a technical term!)-I think I might have picked up a bug on the plane, which wouldn't be a surprise, since that is the best place to get something nasty (except, of course, for hospitals). I'm on the mend now, I think.
Now that the media has criticized the handling of Sandy for nearly a week (as if those idiots could do any better!), we are on to the Presidential election. Do I have an opinion? Come on, is the Pope Catholic??
I never liked Obama. I didn't trust him, I didn't think he had any experience, and my feelings have been completely verified, as far as I am concerned. The second he took credit for the Bin Laden capture-what a set of stones the man has!!-I thought he could never be trusted. He offended his people, he seriously insulted the security forces (who spent so much time and effort, and whose bravery is without question-unlike the president), and I was irked, but not surprised. Odious Obama, Barack the Useless-he has turned out to be rubbish in the White House.
And he will probably get in for a second term, because people will think of him as the lesser of two evils-or, better the devil you know than the devil you don't-rather than someone who is capable of doing a good job - which he clearly is not. I'm 100% with the people who say he is a liar, a hypocrite, cannot be trusted, and is a man of the people-but only a small percentage of the people. I think Obama will lead the people of America (and probably the rest of the Western world) over the edge of a cliff.
We can, of course, vote someone out of office after four years. We can tell him to get his tail out of the White House by going to vote and letting his opposition put his money where his mouth is. The beauty of a democracy is that, if someone makes a million promises and doesn't even start to deliver in four years (but spends his time campaigning and taking holidays, and posing endlessly for photo ops), we can send him packing just by saying no.
I think we need to give Romney a chance-although I'm not crazy about him, either. If he fails to deliver, or even begin to deliver, he needs to know not to get too cozy in Pennsylvania Avenue, because he will be out on his behind in the next election.
Personally, I would have voted for the mouse if I could have written in a vote: Minnie Mouse, not Mickey Mouse. This country had Maggie Thatcher, a strong leader if there ever was one-she had more balls than all the politicians in Whitehall (easy to do, since they are a load of wusses anyway). She didn't pussyfoot around, she called it as she saw it, and scared the living crap out of all the people around her.
Get rid of Pinky and Perky (Cameron and Clegg, the useless duo in charge of the UK), get rid of Barack the Useless, and put women in charge. We don't do all the chest thumping, or the testosterone-induced posturing and basic BS - we just get the job done.
And do we ever have jobs that need doing!! Blair and Bush drove both countries to near-destruction. We need people who are honest, and ethical, and very ballsy to pull both nations out of the toilet.
Then again, saying "honest" and "ethical" in the same sentence as "politician" - hmmm...we are kind of screwed, aren't we??
Tuesday 30 October 2012
The fat lady hasn't sung yet
I'm back in this time zone-it took four days of serious jet lag, but I'm here. More or less. If I'd stayed a few days longer, I would have been grounded due to the hurricane. Part of me wishes I'd been marooned in New York!!
I have learned so much from this trip home. I realize that I have felt angry, fearful and bitter for longer than the two years and three months since the incompetent doctors at Bart's Hospital crippled and nearly killed me. I've lived in fear and survival mode since I walked out on a manipulative, bullying husband nearly ten years ago. He told me that if I left him I would never survive-and, although I set out to prove him wrong, there were times when I wondered whether I made the right decision. It was so very, very difficult!
I got the chance to look at my life - to really scrutinize it - while I was on the plane back from New York. Really, there wasn't anything else to do!! And I understood that, if I hadn't left the bully and run back to a teaching job in the States, I wouldn't have been diagnosed with toxoplasmosis (I've never had cats-so I'm still mystified as to how I developed that), and I would first have gone blind and then died. That is what toxo does in the end; it was due to a very good doctor in Pennsylvania that ordinary blood tests showed both toxo and CVID. And-I had no medical insurance, so I used all my savings on medical treatment (the best treatment, but also very expensive) and then returned to the UK. I'd lived here for so many years that I could return and seek more medical care. That was how I discovered that the seven sets of genes that should provide my immune system are defective - and only 20 people out of every million are born with no immune system. How I lived this long is still a mystery. The condition isn't contagious; I could only pass it on through pregnancy - so nobody else is at risk. And, if I do all the right things, look after myself, am vigilant (without being obsessive), I'll be okay. For awhile.
I had all this to contend with, and I was beginning to just accept that I'm the one who is responsible for my health and for looking after myself-and then the two medical incompetents destroyed (and nearly ended) my life. That was very difficult. I found forgiveness very difficult (still do), even though I know that the mistakes they made were down to incompentence and stupidity rather than any deliberate act. But I couldn't walk, or stand, or read, or drive-or even wash myself, which was really, really humiliating. So I was naturally more than a bit pissed off!!!!
I realized as I sat on the plane that I have come a long way in two years. I'm the least patient person on this earth, but patience was something I had no choice but to cultivate. As long as I am improving-even though improvement seems to have slowed to a snail's pace-I know I can do more. I must do more.
I wanted to see if I could get on and off a plane, if I could see my friends, if I could walk around without falling in front of a moving vehicle-I wanted to see if I have progressed enough to actually be able to do something that isn't sitting on my behind in a room and feeling sorry for myself. And I could. And I did.
I didn't tell my family I was coming (there is truth to the statement that you can pick your friends, but you can't pick your family!!), but I did tell my friends. The people who are closest to me came to see me, and those who couldn't come to the hotel took the time to call. And, of course, I flew to Orlando to see NJ, for the first time in about 13 years, and I'm so glad I did that. Time doesn't always make people drift away; it can also move friends closer.
Even with jet lag for the first four days (and even with a cold sore, which was hugely embarrassing), I made myself go out. I walked-or, rather, I staggered!! I went to the mall and wandered around the shops, even though I just wanted to sit down; I pushed myself to do all the things that make me dizzy and uncomfortable. I pushed myself; I kept telling myself I could do it. I kept telling myself that I am more than a defective immune system, and that I am much more than a destroyed balance system - and I kept walking. And the fear began to subside.
I waited until the day before I was due to fly back to London-I didn't want to go into the city, because I was afraid of falling over, or of being pushed over. For some odd reason, I was really anxious and afraid. In fact, I couldn't sleep the night before I went. On the Wednesday morning, I procrastinated until it was nearly 9:30-and I decided that rush hour would be over, and I needed to learn to handle trains and crowds, regardless of the time of day. So I went. I took the bus to Jamaica Center-and it wasn't terribly crowded-and then took the E train to the World Trade Center to visit Ground Zero. It took me an hour, the trains were clean, I needn't have worried. I lit a candle in St Paul's Church and said a prayer for all the people who were murdered on that day; then I came back via 34th Street, where I just walked and dodged the crowds (it was now lunchtime, so I was really being brave!!).
I would never have attempted this trip six months ago-or even three months ago-and I didn't go everywhere I wanted to go, and I didn't see everything I wanted to see-but that will be done on my next trip. I want to go back next year, and I want to do it without needing a walking stick. I want my 80% - and I will get it, no matter how long it takes.
I feel much less afraid. In fact, I feel liberated. I did something I didn't really believe I could do. But I took the risk and did it - I don't feel obnoxiously smug, but I do feel braver and more competent (and much more secure) than I did before I left. I don't feel crippled or permanently disabled any more; I believe that we are all stronger than we think we are, and that we can do more than we think we can do-if we give ourselves the chance to prove it to ourselves.
I know that the next chest infection could be the last one-it could be the one that will carry me off. But I don't waste time in fear and doubt, in worrying about what will happen next. Time is too precious. This trip taught me that-and a lot more, besides.
I'm not afraid of dying. I'm afraid of dying without ever having lived.
I have learned so much from this trip home. I realize that I have felt angry, fearful and bitter for longer than the two years and three months since the incompetent doctors at Bart's Hospital crippled and nearly killed me. I've lived in fear and survival mode since I walked out on a manipulative, bullying husband nearly ten years ago. He told me that if I left him I would never survive-and, although I set out to prove him wrong, there were times when I wondered whether I made the right decision. It was so very, very difficult!
I got the chance to look at my life - to really scrutinize it - while I was on the plane back from New York. Really, there wasn't anything else to do!! And I understood that, if I hadn't left the bully and run back to a teaching job in the States, I wouldn't have been diagnosed with toxoplasmosis (I've never had cats-so I'm still mystified as to how I developed that), and I would first have gone blind and then died. That is what toxo does in the end; it was due to a very good doctor in Pennsylvania that ordinary blood tests showed both toxo and CVID. And-I had no medical insurance, so I used all my savings on medical treatment (the best treatment, but also very expensive) and then returned to the UK. I'd lived here for so many years that I could return and seek more medical care. That was how I discovered that the seven sets of genes that should provide my immune system are defective - and only 20 people out of every million are born with no immune system. How I lived this long is still a mystery. The condition isn't contagious; I could only pass it on through pregnancy - so nobody else is at risk. And, if I do all the right things, look after myself, am vigilant (without being obsessive), I'll be okay. For awhile.
I had all this to contend with, and I was beginning to just accept that I'm the one who is responsible for my health and for looking after myself-and then the two medical incompetents destroyed (and nearly ended) my life. That was very difficult. I found forgiveness very difficult (still do), even though I know that the mistakes they made were down to incompentence and stupidity rather than any deliberate act. But I couldn't walk, or stand, or read, or drive-or even wash myself, which was really, really humiliating. So I was naturally more than a bit pissed off!!!!
I realized as I sat on the plane that I have come a long way in two years. I'm the least patient person on this earth, but patience was something I had no choice but to cultivate. As long as I am improving-even though improvement seems to have slowed to a snail's pace-I know I can do more. I must do more.
I wanted to see if I could get on and off a plane, if I could see my friends, if I could walk around without falling in front of a moving vehicle-I wanted to see if I have progressed enough to actually be able to do something that isn't sitting on my behind in a room and feeling sorry for myself. And I could. And I did.
I didn't tell my family I was coming (there is truth to the statement that you can pick your friends, but you can't pick your family!!), but I did tell my friends. The people who are closest to me came to see me, and those who couldn't come to the hotel took the time to call. And, of course, I flew to Orlando to see NJ, for the first time in about 13 years, and I'm so glad I did that. Time doesn't always make people drift away; it can also move friends closer.
Even with jet lag for the first four days (and even with a cold sore, which was hugely embarrassing), I made myself go out. I walked-or, rather, I staggered!! I went to the mall and wandered around the shops, even though I just wanted to sit down; I pushed myself to do all the things that make me dizzy and uncomfortable. I pushed myself; I kept telling myself I could do it. I kept telling myself that I am more than a defective immune system, and that I am much more than a destroyed balance system - and I kept walking. And the fear began to subside.
I waited until the day before I was due to fly back to London-I didn't want to go into the city, because I was afraid of falling over, or of being pushed over. For some odd reason, I was really anxious and afraid. In fact, I couldn't sleep the night before I went. On the Wednesday morning, I procrastinated until it was nearly 9:30-and I decided that rush hour would be over, and I needed to learn to handle trains and crowds, regardless of the time of day. So I went. I took the bus to Jamaica Center-and it wasn't terribly crowded-and then took the E train to the World Trade Center to visit Ground Zero. It took me an hour, the trains were clean, I needn't have worried. I lit a candle in St Paul's Church and said a prayer for all the people who were murdered on that day; then I came back via 34th Street, where I just walked and dodged the crowds (it was now lunchtime, so I was really being brave!!).
I would never have attempted this trip six months ago-or even three months ago-and I didn't go everywhere I wanted to go, and I didn't see everything I wanted to see-but that will be done on my next trip. I want to go back next year, and I want to do it without needing a walking stick. I want my 80% - and I will get it, no matter how long it takes.
I feel much less afraid. In fact, I feel liberated. I did something I didn't really believe I could do. But I took the risk and did it - I don't feel obnoxiously smug, but I do feel braver and more competent (and much more secure) than I did before I left. I don't feel crippled or permanently disabled any more; I believe that we are all stronger than we think we are, and that we can do more than we think we can do-if we give ourselves the chance to prove it to ourselves.
I know that the next chest infection could be the last one-it could be the one that will carry me off. But I don't waste time in fear and doubt, in worrying about what will happen next. Time is too precious. This trip taught me that-and a lot more, besides.
I'm not afraid of dying. I'm afraid of dying without ever having lived.
Sunday 28 October 2012
Dazed, confused-and back in the mother country
There are people who never get jet lag-there are people who have jet lag for a day or two, and then they are fine-and then there are those of us who get absolutely slammed by horrendous jet lag in both directions and for about four days each time. That would be me! I'm still running on New York time, and I'm having a tough time writing this blog-which is why I waited until now, although there is a lot of swearing (under my breath, of course) as I keep hitting the wrong keys.
I got to JFK four hours before I was due to board; this is because I had to check out of the hotel, and my friend dropped me off early. I don't mind flying at all; it's the waiting around that irritates me! Happily, Delta will have its own terminal in May of 2013-so I don't have to check in at Terminal 2 and have a huge route march to the gate at Terminal 4!! JFK now has eight terminals-the place is massive!!
I was too tired to have a good look around all the shops when I finally reached the gate, which was in the back of beyond. I figured out why my balance was so terrible: I didn't sleep well on Wednesday night (I never can sleep the night before a flight. Nerves, I think), and everything was so heavy, I felt like a Sherpa with all my stuff. My suitcase weighed in at 54 pounds. Fifty four pounds!!! No wonder it felt heavy (LOL!). And my backpack-I weighed it out of curiosity-weighed a mere 13 pounds. Oh, well-ouch!! And, the thing is, I didn't buy that much. In fact, there were things I wanted to buy that I can't get over here, and I never got around to buying them. When I got back here, I realized that I completely forgot to get some things I felt are essential. Obviously, they weren't that essential or I would have made more of a point in finding them. Then my suitcase would have weighed 60 pounds!!!
What was interesting to me was that there were signs everywhere that Delta participates in Breast Cancer Awareness Month, which now seems to take place every October. There were pink piggy banks on counters, in case anyone wanted to drop in some change. All the staff wore pink: there were pink sweaters, pink stripes on blouses and shirts, one supervisor wore a pink suit-even the steward on the plane wore a pink cravat. Delta went all out to show support for this-and I thought it was great. My seat was over the right wing-and as I looked out the window, I noticed that even the engines were painted pink!! I had to smile at that: pink engines, too (no wonder the cost of tickets has gone up. LOL!!). Delta went all out, and I have to say that I was very pleased about that. Nobody else did that!!
Both New York and Orlando were flooded with pink-the regulation pink that signifies Breast Cancer Awareness Month-and I felt happy that so many people were paying attention. I was proud.
The plane was delayed both ways, take off and landing. In fact, we circled Heathrow for nearly an hour, and I was beginning to think we would run out of fuel, and the passengers would have to walk!! Many passengers were growing very nervous: it was after 7am, we had been in the air about eight hours, and we were still circling the airport. But, as I wrote previously, when there is nothing you can do, you just get on with it (whatever it is).
I got back to North London at about 10:30 on Friday morning - and this time, nobody lost my suitcase. How could they, when it was too heavy to lift!!
Friday and yesterday I was pretty useless. I did my infusions yesterday, hoping that I wouldn't stab myself, since I couldn't really see what I was doing. But that turned out okay, and on both days I managed to stay awake until about 10:30pm before I crashed. My balance and vision still haven't recovered. Yet. But my GP did warn me that I would probably have balance and visual difficulties for a few days, and that is exactly what happened. I'm not worried; I should be back to normal by Tuesday (hopefully).
I wanted to celebrate surviving the last two years, reaching 50% of my balance back (a huge fight if there ever was one), and the birthdays I pretty much ignored since this gentamicin thing happened. And that is what I did: I celebrated by taking two weeks and going home. It wasn't easy, and I didn't do all the things I wanted to do while I was home-but I saw the people who are most important to me, I visited Ground Zero and lit a candle for the people who were senselessly murdered on 9/11, and I can be proud of myself for taking a risk and doing what I thought I never would be able to do.
I've learned a tremendous amount - and that was what drove me, not shopping, or sightseeing. And I will share all that I've learned when I am back in this time zone and I can write without making a lot of mistakes and swearing (I still have no cable, so I am writing from the library computers, so I can't swear out loud. I have to behave myself.LOL).
I've got some decisions to make.
I got to JFK four hours before I was due to board; this is because I had to check out of the hotel, and my friend dropped me off early. I don't mind flying at all; it's the waiting around that irritates me! Happily, Delta will have its own terminal in May of 2013-so I don't have to check in at Terminal 2 and have a huge route march to the gate at Terminal 4!! JFK now has eight terminals-the place is massive!!
I was too tired to have a good look around all the shops when I finally reached the gate, which was in the back of beyond. I figured out why my balance was so terrible: I didn't sleep well on Wednesday night (I never can sleep the night before a flight. Nerves, I think), and everything was so heavy, I felt like a Sherpa with all my stuff. My suitcase weighed in at 54 pounds. Fifty four pounds!!! No wonder it felt heavy (LOL!). And my backpack-I weighed it out of curiosity-weighed a mere 13 pounds. Oh, well-ouch!! And, the thing is, I didn't buy that much. In fact, there were things I wanted to buy that I can't get over here, and I never got around to buying them. When I got back here, I realized that I completely forgot to get some things I felt are essential. Obviously, they weren't that essential or I would have made more of a point in finding them. Then my suitcase would have weighed 60 pounds!!!
What was interesting to me was that there were signs everywhere that Delta participates in Breast Cancer Awareness Month, which now seems to take place every October. There were pink piggy banks on counters, in case anyone wanted to drop in some change. All the staff wore pink: there were pink sweaters, pink stripes on blouses and shirts, one supervisor wore a pink suit-even the steward on the plane wore a pink cravat. Delta went all out to show support for this-and I thought it was great. My seat was over the right wing-and as I looked out the window, I noticed that even the engines were painted pink!! I had to smile at that: pink engines, too (no wonder the cost of tickets has gone up. LOL!!). Delta went all out, and I have to say that I was very pleased about that. Nobody else did that!!
Both New York and Orlando were flooded with pink-the regulation pink that signifies Breast Cancer Awareness Month-and I felt happy that so many people were paying attention. I was proud.
The plane was delayed both ways, take off and landing. In fact, we circled Heathrow for nearly an hour, and I was beginning to think we would run out of fuel, and the passengers would have to walk!! Many passengers were growing very nervous: it was after 7am, we had been in the air about eight hours, and we were still circling the airport. But, as I wrote previously, when there is nothing you can do, you just get on with it (whatever it is).
I got back to North London at about 10:30 on Friday morning - and this time, nobody lost my suitcase. How could they, when it was too heavy to lift!!
Friday and yesterday I was pretty useless. I did my infusions yesterday, hoping that I wouldn't stab myself, since I couldn't really see what I was doing. But that turned out okay, and on both days I managed to stay awake until about 10:30pm before I crashed. My balance and vision still haven't recovered. Yet. But my GP did warn me that I would probably have balance and visual difficulties for a few days, and that is exactly what happened. I'm not worried; I should be back to normal by Tuesday (hopefully).
I wanted to celebrate surviving the last two years, reaching 50% of my balance back (a huge fight if there ever was one), and the birthdays I pretty much ignored since this gentamicin thing happened. And that is what I did: I celebrated by taking two weeks and going home. It wasn't easy, and I didn't do all the things I wanted to do while I was home-but I saw the people who are most important to me, I visited Ground Zero and lit a candle for the people who were senselessly murdered on 9/11, and I can be proud of myself for taking a risk and doing what I thought I never would be able to do.
I've learned a tremendous amount - and that was what drove me, not shopping, or sightseeing. And I will share all that I've learned when I am back in this time zone and I can write without making a lot of mistakes and swearing (I still have no cable, so I am writing from the library computers, so I can't swear out loud. I have to behave myself.LOL).
I've got some decisions to make.
Thursday 25 October 2012
This isn't goodbye - it's see you later!
It's a dreary day. It's as if New York was smiling when I arrived, but is sad to see me leave. I know that is my imagination-but it makes me feel good, so what the heck!!
I'm packed and ready to go-and in a few hours I will be waiting at JFK. It's a long trip, and I am already wanting to stay here. As I said previously: the grass is always greener somewhere else.
The idea was for me to reward myself with a birthday trip home-and also to reward myself for the two year ordeal I have just come through. It was about pushing my boundaries, seeing if I could live a better life, regardless of the circumstances in which I find myself.And that is exactly what I did!
I laugh at the people who say that, whatever the circumstances, whatever the disabilities or challenges, we must face them and move forward; these are the guys who say, yeah, but really, you wouldn't want to go back and change anything. They've never had real problems. They are delusional. Probably completely nuts. Definitely on Prozac.
Would I change everything if I could go back in time and change it? You betcha!! But I can't - and this trip has shown me that I can both survive and thrive, regardless. One thing I have learned the hard way: I've learned to cultivate the one trait I seem to have been born without: patience!!!!
I want my 80% now. Oh, well- I'm getting there. And I'm going to save for another trip back as soon as I can get here. And I'll do it.
I did well these two weeks-so I know that I can do just about anything. Like the man said, I'll be back!!
I'm packed and ready to go-and in a few hours I will be waiting at JFK. It's a long trip, and I am already wanting to stay here. As I said previously: the grass is always greener somewhere else.
The idea was for me to reward myself with a birthday trip home-and also to reward myself for the two year ordeal I have just come through. It was about pushing my boundaries, seeing if I could live a better life, regardless of the circumstances in which I find myself.And that is exactly what I did!
I laugh at the people who say that, whatever the circumstances, whatever the disabilities or challenges, we must face them and move forward; these are the guys who say, yeah, but really, you wouldn't want to go back and change anything. They've never had real problems. They are delusional. Probably completely nuts. Definitely on Prozac.
Would I change everything if I could go back in time and change it? You betcha!! But I can't - and this trip has shown me that I can both survive and thrive, regardless. One thing I have learned the hard way: I've learned to cultivate the one trait I seem to have been born without: patience!!!!
I want my 80% now. Oh, well- I'm getting there. And I'm going to save for another trip back as soon as I can get here. And I'll do it.
I did well these two weeks-so I know that I can do just about anything. Like the man said, I'll be back!!
Wednesday 24 October 2012
Another triumph to add to the list
I didn't want to go into the city today. Honestly-I was afraid. Today was the second overcast day since I got here two weeks ago; it was supposed to rain, but it stayed dry, so that was okay. In fact, it only rained once since I arrived-the first Monday night. But it was dark, and I turn into a pumpkin as soon as it gets dark, so as far as I was concerned, that didn't count anyway!!
I pushed myself to get to Jamaica Center-and I decided to take the E train. By the time I would have arrived at any of the museums, I wouldn't have had enough time, since I really need to be out of trains and buses before the rush hour. So I stood there for a minute - and decided that I really didn't want to go shopping. I have more than enough as it is. What I really wanted to do was to visit Ground Zero. So I took the E train to the last stop: the World Trade Center. It took about an hour.
There were signs everywhere that there are 3,000 people working at the site, and that the World Trade Center Tower 1 is halfway toward the goal of 104 floors. I looked at the building that was half finished: it is truly magnificent - and shrouded in mist. Spooky.
The memorial made me shed more than a tear or two; all tourists seem to flock to the 9/11 memorial, and the architects did a superb job. I then walked across the road to St. Paul's Church; Washington prayed here before he took office as first President of the United States in 1789. And when the towers came down, the church survived. Inside are memorials to the firefighters and police who perished, as well as to all the volunteers who spent so much of their time helping others. It was very humbling, and I lit a candle for the dead. I'm not religious at all-but I really wanted to honor them in some small way.
Then I took the E train back to Penn Station, and spent an inordinate amount of time searching for a flag patch to put on my jacket. There were none to be found. So I took the train back to Jamaica, and the bus back to the hotel.
I have to say that I felt quite a sense of achievement. I was walking in midtown at lunchtime, and I can tell you (sadly) that there are as many idiots with the brains of a doorknob that there are in London. They just don't look where they're going, they don't apologize (God forbid they apologize!!), and they seem to expect you to sprint out of their way, even though it is obvious that you have a balance problem. There is a sad trait that seems to be shared by the British and New Yorkers alike.
But- the point is, I pushed the boat out, even though I really was apprehensive about going into the city; I've allowed the balance problems affect me for a very long time. I couldn't have done any of this two years ago-or even six months ago-but I persevered, and I was okay. Tired-but okay.
The museums will still be there the next time I come home. My favorite bookstore (Barnes & Noble) will still be there the next time I come home. And the next time I come home will -hopefully-be next year, and I expect to be off the walking stick by then, and to have at least 80% of balance back.
I'm not invincible, or unstoppable-but I am very, very determined. And this trip has given me some of my confidence back. Even if I put myself in debtor's prison it would be worth it.
It's a good job I'm going back to Blighty tomorrow-because if I stay any longer, I will need two seats on the plane. I ate (like a horse), I drank (not a lot, just enough to know I can), and I'm happy-and I haven't been happy in a very, very long time!
I pushed myself to get to Jamaica Center-and I decided to take the E train. By the time I would have arrived at any of the museums, I wouldn't have had enough time, since I really need to be out of trains and buses before the rush hour. So I stood there for a minute - and decided that I really didn't want to go shopping. I have more than enough as it is. What I really wanted to do was to visit Ground Zero. So I took the E train to the last stop: the World Trade Center. It took about an hour.
There were signs everywhere that there are 3,000 people working at the site, and that the World Trade Center Tower 1 is halfway toward the goal of 104 floors. I looked at the building that was half finished: it is truly magnificent - and shrouded in mist. Spooky.
The memorial made me shed more than a tear or two; all tourists seem to flock to the 9/11 memorial, and the architects did a superb job. I then walked across the road to St. Paul's Church; Washington prayed here before he took office as first President of the United States in 1789. And when the towers came down, the church survived. Inside are memorials to the firefighters and police who perished, as well as to all the volunteers who spent so much of their time helping others. It was very humbling, and I lit a candle for the dead. I'm not religious at all-but I really wanted to honor them in some small way.
Then I took the E train back to Penn Station, and spent an inordinate amount of time searching for a flag patch to put on my jacket. There were none to be found. So I took the train back to Jamaica, and the bus back to the hotel.
I have to say that I felt quite a sense of achievement. I was walking in midtown at lunchtime, and I can tell you (sadly) that there are as many idiots with the brains of a doorknob that there are in London. They just don't look where they're going, they don't apologize (God forbid they apologize!!), and they seem to expect you to sprint out of their way, even though it is obvious that you have a balance problem. There is a sad trait that seems to be shared by the British and New Yorkers alike.
But- the point is, I pushed the boat out, even though I really was apprehensive about going into the city; I've allowed the balance problems affect me for a very long time. I couldn't have done any of this two years ago-or even six months ago-but I persevered, and I was okay. Tired-but okay.
The museums will still be there the next time I come home. My favorite bookstore (Barnes & Noble) will still be there the next time I come home. And the next time I come home will -hopefully-be next year, and I expect to be off the walking stick by then, and to have at least 80% of balance back.
I'm not invincible, or unstoppable-but I am very, very determined. And this trip has given me some of my confidence back. Even if I put myself in debtor's prison it would be worth it.
It's a good job I'm going back to Blighty tomorrow-because if I stay any longer, I will need two seats on the plane. I ate (like a horse), I drank (not a lot, just enough to know I can), and I'm happy-and I haven't been happy in a very, very long time!
The grass is greener-and other myths
It's such a joy to be able to get online early in the morning-I could get used to this. When I get back, I should be able to do the same-provided, of course, that British Telecom has finally fixed the cables that some engineer broke so long ago that I can't remember the last time I was able to get online from home!!
Ah, British technology-from the same people that brought us the Titanic. What more can one say??
I've been keeping up with the Presidential debates, and I've been talking (briefly) to other guests in the Marriott, as well as hotel staff and my friends. And-it's interesting to me, because I hear so many people say they love London, and they could so easily live there. Ah, yes, I reply-but you've only been there on vacation. You have to have lived there, and struggled to survive there, and then you really know how difficult it is: the economy is in the toilet, there is very high crime, high unemployment, the cost of living is astronomical but the standard of living is way below ours. It isn't Four Weddings and a Funeral; there is nothing romantic about the country except scenery and the accent. And there is a strong anti-American sentiment that seems to grow stronger.
But-I also have heard some Brits say they love New York, and San Francisco (me, too), and Florida-and they would love to live over here. In fact, so many people ask me why on earth I am still living there, now that I got a divorce. That is complicated, so I'll leave it for now. But I can see how difficult it is for my own people, too. We all want what we can't have; the grass is always greener somewhere else. I hear my friend from Pennsylvania dump on America and Americans, and I find it irritating-then I remember that I do the same thing over there. So it's a case of swings and roundabouts.
My good friend NJ pointed out that there are good things and not so good things about both countries; she advised me to look for the good in the UK, since I have to stay there (for now)-and since I have spent more than half my life there. NJ is five years younger than I am-and is very, very wise. We hadn't seen each other for about 13 years, so were both a bit concerned about the Florida visit - but we are really like sisters - except for the fighting and sibling rivalry!
I live there, but my heart will always be here. I'm proud to be exactly who I am.
I did a quick recap during the night; I didn't sleep well, even though the room is very comfortable. I was very aware of the fact that tomorrow I return to London-and I don't know when I will be able to come back to the USA. I hope I can get here before Obama destroys our country-very much like Blair did to the UK. We'll see.
I arrived on Thursday and got to the hotel a little after 4pm. Even with a severe case of jet lag (that lasted until Monday afternoon!!), I just kept going. I hung out with my friend Diane, and my friends from Pennsylvania drove to see me on Sunday and Monday (the day I suddenly developed a cold sore-the first cold sore I have ever had, and I was embarrassed but still didn't let it stop me. After ten days, it is finally beginning to start to heal, and doesn't look like a huge, nasty cauliflower anymore). I was so incredibly pleased that people actually drove over a hundred miles to spend a couple of hours with me, only to have to turn around and drive back to Pennsylvania. In the UK-especially in the last two years-I have been concentrating on remaining upright, so I haven't spent time cultivating friendships. And it's difficult over there; I've met so many nutters that I am somewhat reluctant to hang out with anyone!! I think it's time I socialize more, get out there and do things that interest me. I've spent too much time concentrating on health (or lack thereof). I must admit that I'm fine being a bit of a hermit; I like my own company.
Even Florida smiled on me when I arrived on Thursday. And NJ is a gourmet cook, so I have definitely put some weight on. I kept joking that I will need two seats on the way back to London!! I've probably gained at least five pounds-but I decided to just enjoy myself, and I can lose the weight when I return on Friday morning. I'm not a gourmet cook; I'm not bad, and nobody has died from my cooking (yet)-but I'm no Julia Child (sadly). NJ also sews; give me a needle and thread, and you will get a lot of swearing and a large amount of blood spatter. Good thing I have a good dry cleaners who also repair stuff!! And we spent time on the computer, and NJ showed me a lot of things I didn't know; my computer is a new one, and I need to learn about operating it (my last Toshiba finally went to the giant computer graveyard after 12 years of great service. Boo hiss).
I came back to New York on Monday afternoon-and all flights were great, and the Delta people helped a lot-but I did have some balance issues. My GP warned that I would probably regress after flying, so I was prepared for that. I didn't do much on Monday, and yesterday I walked over to Diane's (a mile and a half) and hung out for awhile; we went to a park near her house, and sat and watched the ducks. It was very peaceful, and I realized that, balance or not, I felt quite happy. Diane, her husband and I went to dinner at TGI Fridays last night-and that will be my last big meal while I'm here in New York. Portion sizes have decreased in an effort to stop the obesity problem-one that the UK shares (more than 40% of UK residents are morbidly obese, so the percentage per capita is about the same in both countries).
Today I am going to be brave and take the bus to the train, and take the train into the city. I don't know how I will react (balance-wise) - but I want to see if I can get to one of the museums. The Metropolitan is a bit far for me (this trip)-anyway, we will see how well I do.
I'm determined not to let this balance problem stop me. This trip is my gift to myself. I didn't really celebrate my birthday for the last few years, so this is my birthday present. It's also an acknowledgment of my two-year fight to both survive and to get as much of my balance back as possible. I refuse to let this setback (as major as it is) to dictate my happiness, and my ability to live a good life. I'm off to the city; as what's his name said: I'll be back!!!
Ah, British technology-from the same people that brought us the Titanic. What more can one say??
I've been keeping up with the Presidential debates, and I've been talking (briefly) to other guests in the Marriott, as well as hotel staff and my friends. And-it's interesting to me, because I hear so many people say they love London, and they could so easily live there. Ah, yes, I reply-but you've only been there on vacation. You have to have lived there, and struggled to survive there, and then you really know how difficult it is: the economy is in the toilet, there is very high crime, high unemployment, the cost of living is astronomical but the standard of living is way below ours. It isn't Four Weddings and a Funeral; there is nothing romantic about the country except scenery and the accent. And there is a strong anti-American sentiment that seems to grow stronger.
But-I also have heard some Brits say they love New York, and San Francisco (me, too), and Florida-and they would love to live over here. In fact, so many people ask me why on earth I am still living there, now that I got a divorce. That is complicated, so I'll leave it for now. But I can see how difficult it is for my own people, too. We all want what we can't have; the grass is always greener somewhere else. I hear my friend from Pennsylvania dump on America and Americans, and I find it irritating-then I remember that I do the same thing over there. So it's a case of swings and roundabouts.
My good friend NJ pointed out that there are good things and not so good things about both countries; she advised me to look for the good in the UK, since I have to stay there (for now)-and since I have spent more than half my life there. NJ is five years younger than I am-and is very, very wise. We hadn't seen each other for about 13 years, so were both a bit concerned about the Florida visit - but we are really like sisters - except for the fighting and sibling rivalry!
I live there, but my heart will always be here. I'm proud to be exactly who I am.
I did a quick recap during the night; I didn't sleep well, even though the room is very comfortable. I was very aware of the fact that tomorrow I return to London-and I don't know when I will be able to come back to the USA. I hope I can get here before Obama destroys our country-very much like Blair did to the UK. We'll see.
I arrived on Thursday and got to the hotel a little after 4pm. Even with a severe case of jet lag (that lasted until Monday afternoon!!), I just kept going. I hung out with my friend Diane, and my friends from Pennsylvania drove to see me on Sunday and Monday (the day I suddenly developed a cold sore-the first cold sore I have ever had, and I was embarrassed but still didn't let it stop me. After ten days, it is finally beginning to start to heal, and doesn't look like a huge, nasty cauliflower anymore). I was so incredibly pleased that people actually drove over a hundred miles to spend a couple of hours with me, only to have to turn around and drive back to Pennsylvania. In the UK-especially in the last two years-I have been concentrating on remaining upright, so I haven't spent time cultivating friendships. And it's difficult over there; I've met so many nutters that I am somewhat reluctant to hang out with anyone!! I think it's time I socialize more, get out there and do things that interest me. I've spent too much time concentrating on health (or lack thereof). I must admit that I'm fine being a bit of a hermit; I like my own company.
Even Florida smiled on me when I arrived on Thursday. And NJ is a gourmet cook, so I have definitely put some weight on. I kept joking that I will need two seats on the way back to London!! I've probably gained at least five pounds-but I decided to just enjoy myself, and I can lose the weight when I return on Friday morning. I'm not a gourmet cook; I'm not bad, and nobody has died from my cooking (yet)-but I'm no Julia Child (sadly). NJ also sews; give me a needle and thread, and you will get a lot of swearing and a large amount of blood spatter. Good thing I have a good dry cleaners who also repair stuff!! And we spent time on the computer, and NJ showed me a lot of things I didn't know; my computer is a new one, and I need to learn about operating it (my last Toshiba finally went to the giant computer graveyard after 12 years of great service. Boo hiss).
I came back to New York on Monday afternoon-and all flights were great, and the Delta people helped a lot-but I did have some balance issues. My GP warned that I would probably regress after flying, so I was prepared for that. I didn't do much on Monday, and yesterday I walked over to Diane's (a mile and a half) and hung out for awhile; we went to a park near her house, and sat and watched the ducks. It was very peaceful, and I realized that, balance or not, I felt quite happy. Diane, her husband and I went to dinner at TGI Fridays last night-and that will be my last big meal while I'm here in New York. Portion sizes have decreased in an effort to stop the obesity problem-one that the UK shares (more than 40% of UK residents are morbidly obese, so the percentage per capita is about the same in both countries).
Today I am going to be brave and take the bus to the train, and take the train into the city. I don't know how I will react (balance-wise) - but I want to see if I can get to one of the museums. The Metropolitan is a bit far for me (this trip)-anyway, we will see how well I do.
I'm determined not to let this balance problem stop me. This trip is my gift to myself. I didn't really celebrate my birthday for the last few years, so this is my birthday present. It's also an acknowledgment of my two-year fight to both survive and to get as much of my balance back as possible. I refuse to let this setback (as major as it is) to dictate my happiness, and my ability to live a good life. I'm off to the city; as what's his name said: I'll be back!!!
Monday 22 October 2012
And another thing I learned
Security people at JFK and Orlando have no sense of humor. NEVER say "hola" to a security person. Not even to be friendly. Especially do not say "hola,wanker", no matter how rude they are. Say it silently (I did. Several times. I nearly hit one with my walking stick. Accidentally, of course).
Airport security people have a tough job-but that is a crappy excuse.
I had to show my passport at Orlando in order to be allowed to get past security. The guy was nasty-but I think that's why they hire people like him.
I said: it's my birthday. And it is also the first time I have been on a plane since my accident. He harrumphed. He really harrumphed. Nobody harrumphs these days. So I said: you could just wish me a happy birthday. And he looked at me like I have three heads, one of which is probably detachable-and he smiled. Well-it might have been a grimace; it was very hard to tell. Happy birthday, have a good flight, he said.
I smiled broadly and said thanks, I will. I probably ruined his entire day.
Airport security people have a tough job-but that is a crappy excuse.
I had to show my passport at Orlando in order to be allowed to get past security. The guy was nasty-but I think that's why they hire people like him.
I said: it's my birthday. And it is also the first time I have been on a plane since my accident. He harrumphed. He really harrumphed. Nobody harrumphs these days. So I said: you could just wish me a happy birthday. And he looked at me like I have three heads, one of which is probably detachable-and he smiled. Well-it might have been a grimace; it was very hard to tell. Happy birthday, have a good flight, he said.
I smiled broadly and said thanks, I will. I probably ruined his entire day.
Off to see the Wizard
I got to Orlando without any kind of incident.
JFK and Orlando Airport both have heavy security - they do the usual: everything in little boxes to be sent through the scanners (including shoes). But-they also have a large machine that xrays every passenger. You walk into it, stand with arms over your head, glass doors close, and a few seconds later, you're done. Probably irradiated for the next fifty years, but done.
I asked someone if this was an xray machine-because there are no notices of any kind. When I was told yes, and the scan was over, I asked how my lungs are. The security people weren't amused. I was (clearly) but they weren't. And I had needles and syrings in my backpack-and it was like Heathrow: nobody said a thing. I must look very innocent. Well-I AM very innocent! Even with the walking stick!!
I got to Orlando Thursday afternoon, and my friend NJ was waiting for me. We both teared up - because, although we talk all the time, we haven't seen each other in thirteen years. I have a strong feeling that true friendship isn't diminished by the passing of time-and I was absolutely right this time.
I had a wonderful time with NJ and her dogs, and her cats, too. We hung out. We walked the dogs-and I walked without the stick. I didn't fall over once. So I know that, even with jet lag for the first four days, and even spending two hours (and a bit) on a plane, I was pretty much okay.
We went to the Bose store-because I wanted to buy a pair of Bose headphones. Extravagant? Yes-but I realized before I got on the plane from Heathrow that I am rewarding myself for surviving the last two years.
I survived. I've made it this far, and I will get to that magic 80%, and I don't care how long it takes. What is important is that I took the risk, I made the decision, and I didn't sit on my behind and complain about my bad luck (well, I did, but only for the first 20 months or so. Then I was too bored to continue).
We shared a beautiful bottle of champagne last night, since it was my last night in Orlando for awhile.
But there is one thing I know for certain: it won't be another 13 years (hopefully not even another 13 months!) before I get on a plane again and go to visit NJ in Orlando.
As the saying goes: I'll be back! (who said that again? Oh, yeah: somebody who is a lot older than I am!!!LOL)
JFK and Orlando Airport both have heavy security - they do the usual: everything in little boxes to be sent through the scanners (including shoes). But-they also have a large machine that xrays every passenger. You walk into it, stand with arms over your head, glass doors close, and a few seconds later, you're done. Probably irradiated for the next fifty years, but done.
I asked someone if this was an xray machine-because there are no notices of any kind. When I was told yes, and the scan was over, I asked how my lungs are. The security people weren't amused. I was (clearly) but they weren't. And I had needles and syrings in my backpack-and it was like Heathrow: nobody said a thing. I must look very innocent. Well-I AM very innocent! Even with the walking stick!!
I got to Orlando Thursday afternoon, and my friend NJ was waiting for me. We both teared up - because, although we talk all the time, we haven't seen each other in thirteen years. I have a strong feeling that true friendship isn't diminished by the passing of time-and I was absolutely right this time.
I had a wonderful time with NJ and her dogs, and her cats, too. We hung out. We walked the dogs-and I walked without the stick. I didn't fall over once. So I know that, even with jet lag for the first four days, and even spending two hours (and a bit) on a plane, I was pretty much okay.
We went to the Bose store-because I wanted to buy a pair of Bose headphones. Extravagant? Yes-but I realized before I got on the plane from Heathrow that I am rewarding myself for surviving the last two years.
I survived. I've made it this far, and I will get to that magic 80%, and I don't care how long it takes. What is important is that I took the risk, I made the decision, and I didn't sit on my behind and complain about my bad luck (well, I did, but only for the first 20 months or so. Then I was too bored to continue).
We shared a beautiful bottle of champagne last night, since it was my last night in Orlando for awhile.
But there is one thing I know for certain: it won't be another 13 years (hopefully not even another 13 months!) before I get on a plane again and go to visit NJ in Orlando.
As the saying goes: I'll be back! (who said that again? Oh, yeah: somebody who is a lot older than I am!!!LOL)
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