Last week was the first day of Spring-allegedly. On the Friday, the second day of spring, it snowed. What affrontery!! I was so ready for anything but snow! So I decided to go out while it was still snowing-before it turned to ice-and just buy basics, like eggs and milk. And that was my Friday.
On Saturday it really snowed-and I mean, really...in some parts of the country people have no electricity because the power cables have been knocked down. In North London it was very unpleasant, and I decided that I might be wise to just stay in and let other people fall on the ice and break things-like arms, and legs, and other parts of the anatomy. So I waited, not terribly patiently, and by Sunday morning some genius in Haringey Council had finally decided to put down some grit, so I was able to get out. By then, who wanted to go anywhere? It was bloody freezing!!!!!
Well...as you bloggees can tell, I didn't blog. I ruminated instead. I started to feel really sorry for myself as soon as the snow started to fall. When my balance goes (in a big way), I know that conditions are not good for walking, and that I have ignored the cardinal rules of dealing with the total lack of a balance system: lots of rest, lots of water, eating properly, doing as much exercise as I can force myself to do-and no walking when conditions are treacherous. Every time I seem to gain some ground in one area, I suddenly lose it. It is very discouraging, to say the least.
So I decided to go to drop in on the Unitarians on Sunday. I was depressed - but mostly, I was bored. So I thought that if I forced myself to go somewhere, I might feel better. And that experience taught me something really valuable: I can stop myself from ruminating, and feeling huge amounts of self-pity, from boring myself rigid, from stuffing my face with Kettle Chips (and chocolate, and anything else that isn't nailed down), by forcing myself to get out of the house and do something constructive. I've known this, but I have chosen to ignore it-until now.
So-I went to church. And I got there about twenty minutes before the service was due to start-AND-I got pressed into service. I am now in the choir. Stop laughing. I was actually pretty good (or the music director was very polite). We didn't sing hymns, but sang short uplifting songs-and we sang Bridge Over Troubled Water, which is as un-churchy as you can get. I didn't need the music for that one, since it is a long time favorite.
After the service was over, I asked the woman singing next to me whether I was singing flat. She said that I was great-and asked me if I ever sang in a choir before (I sang in church when I was in my teens. That was enough to put me off religion forever). Well, anyway-I felt better, and I did okay. I am now asked to sing every week-every week I show up, that is. There is no hard and fast rule about always coming to church - and it is very secular - I quite liked it. People were friendly-unlike some places I have been before!!
I walked from the bus station at Finsbury Park home-about two or three miles, I suppose. I wanted to make up for not walking all weekend-but I can tell you, I froze my ass off. All I wanted to do was have a good strong coffee and sit in front of the heater when I got home.
On Monday, something happened to ruin my entire week. I received a copy of Matt's letter (Matt being my immunologist) to Margaret, my GP. It seems that I have a liver problem, one that is shared by many people who were born with CVID. Matt wrote that I would need an annual ultrasound to keep an eye on it. He "accidentally" forgot to tell me this when I last saw him a couple of weeks ago. I wonder what else he has "accidentally" omitted to tell me since I started seeing him! So I called my nurse at the Royal London and we spent a good twenty minutes discussing the problem-which, if left untreated, could lead to really HUGE problems in the future. John told me not to worry; a lot of CVID patients have this, it's part of the condition. But, then, so is cancer. So I wasn't very happy. The fact that I rarely drink is a bonus, although John told me that a glass of wine a day is fine-good for the heart, but what about the liver!!
You know the saying about being stuck between a rock and a hard place? I feel more like I am stuck between two very high cliffs and very deep precipices, and I am being forced to choose which way to fall. Either way, the end result is pretty shitty. So I only went out when I had to-I spent the past few days brooding. Brooding is not good. Happy thoughts didn't help a bit.
I just got online after a week of ruminating and feeling really very grumpy. And I decided to do something constructive, so I looked up the liver condition to see just how serious things really are. Isn't WebMD fun!!
I did discover a lot that cheered me up-in fact, I wish I had done this on Monday, so I would have had a more productive week (self-pity is never productive!!). I'm not a drinker, and I'm not obese, and I have low cholesterol and I don't have diabetes. So-I can reverse the liver problem before there is long term damage. How? Alas!!! No more Kettle Chips!! Or fried food. Or sugar (so no more chocolate). Or red meat (I don't eat that anyway, especially since they serve horsemeat in this country, disguised as beef. Ewww!!!). More green vegetables, more whole fruits (supermarket juices are full of sugar), lots and lots of water. I will be floating. In fact, you will be able to find me in the bathroom, peeing. At least my kidneys are healthy!!!
I started to suddenly feel old last weekend-and Monday especially. Now I feel better, because I took action, rather than waiting for someone else to do something. I did it myself. There is nothing better for self-confidence than being proactive. Get out there (I told myself). Do something. Walk. Do everything that makes me dizzy, and do it a hundred times (if I can do so without falling over). Just do it. And don't complain. Nobody wants to be around a moaner.
I read an article in some magazine while I was sitting and waiting to see Margaret. Some well-known actress was saying that 60 is the new 40 (believe me when I say that, even with airbrushing, she looked 60). That means, of course, that 50 is then the new 30. So is 40 the new 20? Then what about 20-are people going to go around in Pampers? Eeek. Well, so 50 is the new 30-etc. Then 80 is the new 60-etc. Aren't people dying young these days?
I had to smile at the article-and the actress, someone who is completely unknown to me (I wonder why). John told me that I can live a normal lifespan as long as I take very good care of myself and I'm vigilant about any signs of anything untoward. It's the slowness of the neuroplasticity, the slowness of getting more balance back, that bothers me more than cancer, which is something I've had before, and which I'm told is inevitable.
Excuse me, but nothing is inevitable (except death, of course, and I won't go quietly. Unless I'm 100. And on a Harley, riding through Big Sur with my 75 year old boyfriend sitting behind me).
All things considered, I'm in very good shape. I'm still here. And I'm not going anywhere.
Thursday 28 March 2013
Wednesday 20 March 2013
Never give up. Never walk away. Never quit. Fight back!!
It's been another difficult time for me. My knee is still very painful, but the swelling has gone down. It's now the size of a grapefruit, rather than the size of a melon. That's what I call progress!!
On Saturday I felt so sorry for myself I couldn't even imagine hitting the Kettle Chips-my emergency feel good solution. I was so upset!! By Sunday I was feeling a little better-and by Monday I was blogging my anger and my disappointment-and, as always, life begins to look better when it isn't raining and when I am able to walk again. I'm still limping on both legs-but it isn't as bad as it was on Saturday, so I know I didn't break anything, I just bruised the hell out of my leg. And arm. And entire left side of my body...
Yesterday I was due to return to the Royal London to see Dr. Dimples. He is one of the only people at Barts who has been supportive and encouraging since the gentamicin fiasco, and every time I get down and think I have hit a wall, I remember what he said about neuroplasticity and that he thinks I can get that all-important 80% back-I just need to be patient. As if!!! But-only Dimples and Margaret (my GP) are encouraging. Nobody else gives a damn-especially the people who caused this. As Margaret reminds me, I need to let it go, because all these toxic emotions are preventing me from making progress.
Dimples wasn't there yesterday; I saw his registrar, Ashley. She was just great. I suddenly got very teary-eyed about the fact that recovery is taking such a long time-it's been two years and eight months!!- and she reminded me that she and Dimples both encourage me not to give up, because I will still make more progress. As Ashley said, I need to keep working: do the exercises, walk, do everything that makes me dizzy-and don't get upset. The more upset I get, the worse the dizziness gets. So I am cheered by the fact that I've got one more person in my corner-one more clinician in my corner, one more medical person who understands the (hideously slow) recovery process. So, onward and upward, and no more falling over!!
I was walking in Whitechapel before my appointment yesterday, and some imbecile nearly knocked me over. I didn't swear at him; this being Whitechapel, he could have pulled a gun or a knife, who knows? I did, however, call him a retard's afterbirth-that just came out before I thought about it. He just glared at me and kept walking. But one of the community officers (I call them the plastic policemen, because they are unarmed and just ordinary citizens in uniform, with no real powers) was standing right behind me, and started to laugh. She said I mustn't react like that-although she found it very funny-because many of these people are on drugs, or armed, or insane, or just dangerous, and it's obvious that I can't protect myself. And several people heard my outburst, and started laughing, too. I now have started a trend: people all over East London will be calling other people a retard's afterbirth. Huh-knock yourselves out. It's probably true anyway.
That has been my week so far. I will keep in mind what the plastic (and the real) police said about reacting to people who crash into me: no matter how hard it is to keep from swearing at them, I must not do so. It's just too dangerous. I'm learning to just shut up and keep walking. Arghhhh!!
On Saturday I wanted to just get on a plane and go home. I feel that way most of the time. In fact, I feel that way ALL of the time!! But I know that isn't possible-at least, not yet. So I will work harder, and I won't quit. If necessary I will go to the media-but I can't do that until I find another immunology center. I am more than a little bit between a rock and a hard place. That just makes me want to fight harder.
The best revenge is success.
On Saturday I felt so sorry for myself I couldn't even imagine hitting the Kettle Chips-my emergency feel good solution. I was so upset!! By Sunday I was feeling a little better-and by Monday I was blogging my anger and my disappointment-and, as always, life begins to look better when it isn't raining and when I am able to walk again. I'm still limping on both legs-but it isn't as bad as it was on Saturday, so I know I didn't break anything, I just bruised the hell out of my leg. And arm. And entire left side of my body...
Yesterday I was due to return to the Royal London to see Dr. Dimples. He is one of the only people at Barts who has been supportive and encouraging since the gentamicin fiasco, and every time I get down and think I have hit a wall, I remember what he said about neuroplasticity and that he thinks I can get that all-important 80% back-I just need to be patient. As if!!! But-only Dimples and Margaret (my GP) are encouraging. Nobody else gives a damn-especially the people who caused this. As Margaret reminds me, I need to let it go, because all these toxic emotions are preventing me from making progress.
Dimples wasn't there yesterday; I saw his registrar, Ashley. She was just great. I suddenly got very teary-eyed about the fact that recovery is taking such a long time-it's been two years and eight months!!- and she reminded me that she and Dimples both encourage me not to give up, because I will still make more progress. As Ashley said, I need to keep working: do the exercises, walk, do everything that makes me dizzy-and don't get upset. The more upset I get, the worse the dizziness gets. So I am cheered by the fact that I've got one more person in my corner-one more clinician in my corner, one more medical person who understands the (hideously slow) recovery process. So, onward and upward, and no more falling over!!
I was walking in Whitechapel before my appointment yesterday, and some imbecile nearly knocked me over. I didn't swear at him; this being Whitechapel, he could have pulled a gun or a knife, who knows? I did, however, call him a retard's afterbirth-that just came out before I thought about it. He just glared at me and kept walking. But one of the community officers (I call them the plastic policemen, because they are unarmed and just ordinary citizens in uniform, with no real powers) was standing right behind me, and started to laugh. She said I mustn't react like that-although she found it very funny-because many of these people are on drugs, or armed, or insane, or just dangerous, and it's obvious that I can't protect myself. And several people heard my outburst, and started laughing, too. I now have started a trend: people all over East London will be calling other people a retard's afterbirth. Huh-knock yourselves out. It's probably true anyway.
That has been my week so far. I will keep in mind what the plastic (and the real) police said about reacting to people who crash into me: no matter how hard it is to keep from swearing at them, I must not do so. It's just too dangerous. I'm learning to just shut up and keep walking. Arghhhh!!
On Saturday I wanted to just get on a plane and go home. I feel that way most of the time. In fact, I feel that way ALL of the time!! But I know that isn't possible-at least, not yet. So I will work harder, and I won't quit. If necessary I will go to the media-but I can't do that until I find another immunology center. I am more than a little bit between a rock and a hard place. That just makes me want to fight harder.
The best revenge is success.
Monday 18 March 2013
There is a good reason I wasn't named Grace
On Saturday, I left the library after I blogged-and everything should have been fine. Except, it wasn't. It had been raining, so I had my umbrella up, and my hands were full. Bad mistake. I was walking down the concrete steps outside-which were wet-and, I discovered (too late) slippery. I took a header down and landed on my left knee-which was (up until then) my good knee. I hit my left arm, scraped my left side, and my poor old knee-I thought I'd broken something.
I was flat on my face in the mud and wet, and was stunned for a few minutes; it took me a good five or ten minutes to get myself up. And people were walking over me and around me; not a single person stopped to see if they could help. That upset me more than being injured: not a soul even asked if I was okay.
Now, I make fun of the Brits all the time (as you bloggees know by now). It's fun (sometimes), it certainly is easy to take pot shots at people who have the collective intelligence of a snickerdoodle. But I can now add that most Brits (not all-most, in my vast experience of living here many years) are rude, have no class or manners or intelligence, and don't give a rat's patootie about anyone but themselves. To say I was fuming is an understatement.
Really-anyone who still believes that this place is like Four Weddings and a Funeral, or that the British have manners, class, politeness, integrity, intelligence, honesty-is a total idiot. I certainly can't blame this appalling treatment on Saturday (or the horrendous treatment of the past two years and eight months-and before) to the xenophobia that is rampant in this country, because people didn't even stop to find out who I was, let alone help me (or offer to help me) get on my feet. Some of them even laughed. Now I just look at all of them with nothing but the greatest contempt and derision. Brits suck.
So there is my rant-and I think it is well justified-although I have to also say that I have met some very lovely people here: intelligent, polite, funny, kind-but now I think that good people are in the small minority, not the majority (as I had wanted to believe). Sad country, this one. It's even sadder that I am now stuck here. If I could come home and find work, I would be on the next plane, and I wouldn't let the door hit me in the ass on the way out. Happily, I'm not the only one who feels that way: people are emigrating in huge numbers. No surprise there at all. Absolutely none.
And-I learned the hard (and painful) way that I must always have one hand free and be near a railing of some kind when walking up or down stairs, just in case. No brollies up in the rain; I will just get wet. So what? I like rain. I don't especially like being out in a monsoon, but I don't mind getting a little wet!
Now I am limping on both legs! So, no gym until the swelling goes down (I expect to be back there tomorrow). I'm lucky I didn't break any bones; that would be a trip to the hospital. And we all know how successful my hospital journeys have been!! Sometimes I think that being treated by a chimpanzee would be more effective; it would certainly be safer.
So yesterday I decided to get over feeling sorry for myself-I stayed in the rest of Saturday, wiping up the blood, icing my leg, and treating all the cuts, and feeling really depressed-and I took myself to the Unitarian Church. It was my second visit. It was very different. The minister was joking, people were laughing and happy...and the sermon was on the "cult of advertising". Reverend Andy was excellent, and I was able to speak with more of the congregation after the service. There was no talk of repentence, or anyone dying for our sins, or going to Hell if we didn't do what we were told...it is very different from your usual church service. I quite liked it, even though my bruises were aching and my knees were (and still are) the size of melons (small melons-honeydews, probably).
I've been creaking since Saturday, like a rusty hinge, or the Tinman out of the Wizard of Oz. I'm not sure if I need oil-or brandy. I think I prefer the brandy; at least I would forget the pain!!
It is supposed to get even colder and rain all week-so forewarned is forearmed, I say. No brollies up when walking up or down stairs! And one hand always free in case I need to grab something to keep from falling. I would grab someone, but I would probably be stabbed!!
Last night I toasted my Irish friends with a glass of Guinness. I haven't had Guinness in years. I really liked it. I'm sure there are many hangovers this morning-but at least I didn't have one from ONE glass of Guinness!! Perhaps I should take up drinking....
I was flat on my face in the mud and wet, and was stunned for a few minutes; it took me a good five or ten minutes to get myself up. And people were walking over me and around me; not a single person stopped to see if they could help. That upset me more than being injured: not a soul even asked if I was okay.
Now, I make fun of the Brits all the time (as you bloggees know by now). It's fun (sometimes), it certainly is easy to take pot shots at people who have the collective intelligence of a snickerdoodle. But I can now add that most Brits (not all-most, in my vast experience of living here many years) are rude, have no class or manners or intelligence, and don't give a rat's patootie about anyone but themselves. To say I was fuming is an understatement.
Really-anyone who still believes that this place is like Four Weddings and a Funeral, or that the British have manners, class, politeness, integrity, intelligence, honesty-is a total idiot. I certainly can't blame this appalling treatment on Saturday (or the horrendous treatment of the past two years and eight months-and before) to the xenophobia that is rampant in this country, because people didn't even stop to find out who I was, let alone help me (or offer to help me) get on my feet. Some of them even laughed. Now I just look at all of them with nothing but the greatest contempt and derision. Brits suck.
So there is my rant-and I think it is well justified-although I have to also say that I have met some very lovely people here: intelligent, polite, funny, kind-but now I think that good people are in the small minority, not the majority (as I had wanted to believe). Sad country, this one. It's even sadder that I am now stuck here. If I could come home and find work, I would be on the next plane, and I wouldn't let the door hit me in the ass on the way out. Happily, I'm not the only one who feels that way: people are emigrating in huge numbers. No surprise there at all. Absolutely none.
And-I learned the hard (and painful) way that I must always have one hand free and be near a railing of some kind when walking up or down stairs, just in case. No brollies up in the rain; I will just get wet. So what? I like rain. I don't especially like being out in a monsoon, but I don't mind getting a little wet!
Now I am limping on both legs! So, no gym until the swelling goes down (I expect to be back there tomorrow). I'm lucky I didn't break any bones; that would be a trip to the hospital. And we all know how successful my hospital journeys have been!! Sometimes I think that being treated by a chimpanzee would be more effective; it would certainly be safer.
So yesterday I decided to get over feeling sorry for myself-I stayed in the rest of Saturday, wiping up the blood, icing my leg, and treating all the cuts, and feeling really depressed-and I took myself to the Unitarian Church. It was my second visit. It was very different. The minister was joking, people were laughing and happy...and the sermon was on the "cult of advertising". Reverend Andy was excellent, and I was able to speak with more of the congregation after the service. There was no talk of repentence, or anyone dying for our sins, or going to Hell if we didn't do what we were told...it is very different from your usual church service. I quite liked it, even though my bruises were aching and my knees were (and still are) the size of melons (small melons-honeydews, probably).
I've been creaking since Saturday, like a rusty hinge, or the Tinman out of the Wizard of Oz. I'm not sure if I need oil-or brandy. I think I prefer the brandy; at least I would forget the pain!!
It is supposed to get even colder and rain all week-so forewarned is forearmed, I say. No brollies up when walking up or down stairs! And one hand always free in case I need to grab something to keep from falling. I would grab someone, but I would probably be stabbed!!
Last night I toasted my Irish friends with a glass of Guinness. I haven't had Guinness in years. I really liked it. I'm sure there are many hangovers this morning-but at least I didn't have one from ONE glass of Guinness!! Perhaps I should take up drinking....
Saturday 16 March 2013
Another rainy day in Paradise
I had to go to the gym-and it is a real effort to get myself up and out the door. Once I get there, I enjoy it: boring myself stupid on the treadmill, nearly rupturing myself on the free weights...but I have to do it. If I don't, my stomach will enter a room way before the rest of me-and my ass will follow ten minutes later.The gym it is.
I did something I haven't done in a very long time: I took a ride on the London Underground. What a joy!! It is quite something else. I seem to find myself standing (because nobody has the good manners to offer a seat to someone who obviously is unable to remain upright) next to tall people. I had one man on one side who clearly hasn't had a bath for months. Maybe years. Maybe ever. I am not very tall, and I came up to his armpit. What a good thing that I never have breakfast, or he would have been wearing it. And on my other side was someone who must love garlic-and beans. Don't forget the beans!! The man was suffering from a bad case of flatulence-and the smell was unbelievable. It smelled like a rat crawled up his ass and died.
This is why I try to avoid the Underground at all costs. Honestly-why blow up buildings if you want to kill a load of Brits? Just stick them all in an overcrowded train, and cause a delay of at least an hour. The ones who don't fight and kill each other will most definitely asphyxiate-and not because of the lack of air, either!
They will all fart themselves to death. That would be interesting: death by flatulence.
Anyone who decides to try this out: please let me know in advance. I will be at the gym.
I see that a new Pope has been chosen-I'm so glad they got rid of Benny the Rat, the Nazi Pope. I will be interested to see if this one is any better. No surprises that I find the Unitarians so interesting-because the mainline Catholics are against things I support: abortion, freedom of choice, same sex marriages, tolerance for everyone regardless of their beliefs-as long as they don't kill or maim other people, don't rape children (so much for the Catholic priests on that one!!), don't harm animals.
It's a good thing I wasn't born Catholic: I would have been excommunicated at birth-or maybe shot. Who doesn't believe in birth control, and then has ten children they can't care for, support, love, look after? Sorry, but that is someone who is just plain stupid. Fundamentalist religion is just a big load of bollocks.
So, now that I have alienated all the Catholics (who will be sending me straight to Hell), I have to say Happy St. Patrick's Day to all my Irish friends-and my Irish Catholic friends, if there are any left!! AND-to all the Irish guys out there, I will have a toast on your behalf.
If I am a blogger, does that make people who read my blogs bloggees? Just an interesting idea...so cheers to all my Irish bloggees - me, I will be opening the wine at home, since pubs around here are dangerous! LOL!!! Shamrocks and green beer...ewww...
I did something I haven't done in a very long time: I took a ride on the London Underground. What a joy!! It is quite something else. I seem to find myself standing (because nobody has the good manners to offer a seat to someone who obviously is unable to remain upright) next to tall people. I had one man on one side who clearly hasn't had a bath for months. Maybe years. Maybe ever. I am not very tall, and I came up to his armpit. What a good thing that I never have breakfast, or he would have been wearing it. And on my other side was someone who must love garlic-and beans. Don't forget the beans!! The man was suffering from a bad case of flatulence-and the smell was unbelievable. It smelled like a rat crawled up his ass and died.
This is why I try to avoid the Underground at all costs. Honestly-why blow up buildings if you want to kill a load of Brits? Just stick them all in an overcrowded train, and cause a delay of at least an hour. The ones who don't fight and kill each other will most definitely asphyxiate-and not because of the lack of air, either!
They will all fart themselves to death. That would be interesting: death by flatulence.
Anyone who decides to try this out: please let me know in advance. I will be at the gym.
I see that a new Pope has been chosen-I'm so glad they got rid of Benny the Rat, the Nazi Pope. I will be interested to see if this one is any better. No surprises that I find the Unitarians so interesting-because the mainline Catholics are against things I support: abortion, freedom of choice, same sex marriages, tolerance for everyone regardless of their beliefs-as long as they don't kill or maim other people, don't rape children (so much for the Catholic priests on that one!!), don't harm animals.
It's a good thing I wasn't born Catholic: I would have been excommunicated at birth-or maybe shot. Who doesn't believe in birth control, and then has ten children they can't care for, support, love, look after? Sorry, but that is someone who is just plain stupid. Fundamentalist religion is just a big load of bollocks.
So, now that I have alienated all the Catholics (who will be sending me straight to Hell), I have to say Happy St. Patrick's Day to all my Irish friends-and my Irish Catholic friends, if there are any left!! AND-to all the Irish guys out there, I will have a toast on your behalf.
If I am a blogger, does that make people who read my blogs bloggees? Just an interesting idea...so cheers to all my Irish bloggees - me, I will be opening the wine at home, since pubs around here are dangerous! LOL!!! Shamrocks and green beer...ewww...
Thursday 14 March 2013
It's a heatwave!
Yesterday we had snow. Today we have 45F-or, allegedly, will have temps up to 45F this afternoon: a veritable heatwave. Then it goes cold again. If there was a place that is peaceful, quiet, remains sunny and around 20C (68F) all year around, only rains when we are asleep...I would go there. Of course, so would everyone else!!! Nice dream, though.
Sunday's church excursion got me thinking-of course, what else do I have to do, anyway? I'm still mystified as to how (and why) atheists want to go to a church...I'll be returning on Sunday to find out. My interest has been piqued. And-for two years and eight months I have found it difficult to be interested in much of anything, with the exception of remaining upright so I don't fall in front of a moving bus. In that sense, church has helped me-go figure!!
I did go back to the optician yesterday. I thought Talia would have a coronary when she saw me complaining about these glasses. But-at more than £500 (much more!), they need to be absolutely right. So the woman who sold them to me is having them fixed. It will be another week without glasses, which is a nuisance, but at least I should (allegedly) be able to read without twisting my head around to near breaking point.Hooray.
I thought that time was just dragging by-but, in fact, it seems to be moving at something approaching warp speed. It will soon be Easter, and I will probably have my knee surgery shortly thereafter. It will be really painful-but in a few months time I should be in a lot less pain. And I need to be able to walk without falling over and injuring that knee again. Practice, I guess.
I am seriously considering going public and contacting the newspapers about Bart's. I haven't quite got there yet-and I don't even know if there will be any interest. What I do know is that I have been stuck for more than two and a half years, and now I have to unstick myself. Nobody can do it for me. Those three or four sessions with Dr. Weirdo didn't help me at all-except to prove to me that I am more sane than he is, and that I can be my own therapist. And I won't even have to travel!!
It is now March, and there are all kinds of events going on. The Tate has exhibitions, there is something called Tiger Tracks at St. Pancras-in an effort to save the 1,500 tigers still alive in the wild from becoming an extinct species-and I am going to that this week to see what information is being offered.
I feel a bit badly: I am sitting on my posterior in North London and people are destroying the planet even as I sit here. It's that cornerstone of life again: life is unfair. But-people are trying to do something, and if enough people get in there and make enough noise, perhaps we can save something...or am I just being the eternal optimist?
Sunday's church excursion got me thinking-of course, what else do I have to do, anyway? I'm still mystified as to how (and why) atheists want to go to a church...I'll be returning on Sunday to find out. My interest has been piqued. And-for two years and eight months I have found it difficult to be interested in much of anything, with the exception of remaining upright so I don't fall in front of a moving bus. In that sense, church has helped me-go figure!!
I did go back to the optician yesterday. I thought Talia would have a coronary when she saw me complaining about these glasses. But-at more than £500 (much more!), they need to be absolutely right. So the woman who sold them to me is having them fixed. It will be another week without glasses, which is a nuisance, but at least I should (allegedly) be able to read without twisting my head around to near breaking point.Hooray.
I thought that time was just dragging by-but, in fact, it seems to be moving at something approaching warp speed. It will soon be Easter, and I will probably have my knee surgery shortly thereafter. It will be really painful-but in a few months time I should be in a lot less pain. And I need to be able to walk without falling over and injuring that knee again. Practice, I guess.
I am seriously considering going public and contacting the newspapers about Bart's. I haven't quite got there yet-and I don't even know if there will be any interest. What I do know is that I have been stuck for more than two and a half years, and now I have to unstick myself. Nobody can do it for me. Those three or four sessions with Dr. Weirdo didn't help me at all-except to prove to me that I am more sane than he is, and that I can be my own therapist. And I won't even have to travel!!
It is now March, and there are all kinds of events going on. The Tate has exhibitions, there is something called Tiger Tracks at St. Pancras-in an effort to save the 1,500 tigers still alive in the wild from becoming an extinct species-and I am going to that this week to see what information is being offered.
I feel a bit badly: I am sitting on my posterior in North London and people are destroying the planet even as I sit here. It's that cornerstone of life again: life is unfair. But-people are trying to do something, and if enough people get in there and make enough noise, perhaps we can save something...or am I just being the eternal optimist?
Monday 11 March 2013
A very strange week, indeed
I did go to collect my glasses on Saturday-and I was afraid they were going to be so heavy (because of the prisms) that I would need a forklift to lift them. No-I didn't look like the character from Harry Potter (the one who has glasses like coke bottles). The things were normal-but I am supposed to be okay with them, and I'm really having trouble. I have a small nose and the things just slide down - and off. It's hilarious-good thing my reflexes are fast enough to grab them before they hit the floor.
I did say the week was strange. On Saturday I went to Islington to check out the Unitarian Church. They were having an International Women's Day celebration (a day late-what the heck, why not). The building was teeming with people. In fact, Islington was teeming with people. I had to dodge some of the people pushing their baby buggies-and the men were the worst offenders. Are these people blind, or what??
I got the chance to speak with the minister, whose name is Andy. And this is where it gets very surreal (read that as weird, very weird). He is an ordained Unitarian minister who was raised Jewish, but is an atheist. And he said that most of the congregation was also atheist. Go figure. How do you have a church with an atheist congregation, and a Jewish atheist minister? Er...pardon????
Now, I haven't been really interested in much in two years and eight months. My only real interest was survival-survival and working to get as much balance back as I could. I was really, really afraid that I would spend the rest of my life falling over, with bruises on my bruises, and alone, because who on earth would want a friend who has no balance, poor vision, and falls over without any warning? But I have to say that my interest in the Unitarians got me out of my fear of going anywhere, and yesterday I trekked over to Hackney to attend the Sunday service at the other Unitarian Church-which has stood on that spot for a hundred and something years. It was a proper church: pews with little doors at the end and all.
It really appealed to me, too. There was no dogma-Andy told me he loathes dogma, and so do I, so we were off to a good start. After a sermon on generosity-that had no mention of anyone dying for our sins, or the fact that God won't love anyone who doesn't believe in Jesus, and all that stuff (sorry, Baptists!), we had a coffee hour. I practically sprinted into the next room so I could talk with some of the congregation. And I heard from people of all ages, all backgrounds, all cultures, all beliefs, and all religions. They all had a common goal: personal growth and evolution, ignoring dogma and concentrating instead on action: what they could do for others, without judging people who believed differently from them. I thought: I like this, I'm in.
So I will go back next week, even though it is a bit of a trek to get there. I think it's worth it. People actually care about other people, about working together to build a better future...I might sound a bit Pollyanna-ish, and I certainly want to speak with more people next week-but I liked the people I met. There was no "you have to come to a housegroup/study group/church every week to prove you are a good Christian, and if you don't and aren't a good Christian, we don't want to have anything to do with you. Unitarians are so much more liberal and non-judgmental- I really enjoyed my Sunday.
I have worked very hard and I have been very much alone while I was trying to survive. I have a really close friend overseas-but she is overseas, and I don't want to dump everything all over her (by phone, too!). So it might be nice to just meditate on a Sunday with people who don't proselytize, or try to recruit me (or anyone else) with such missionary zeal-or who try to engender guilt when I'm not in church each week. Who needs that? I'm not an atheist-but I'm not a Baptist, either. No offense to anybody who is religious-but when it comes to converting me, back off!!!!!
Telling me I'll go to Hell if I don't believe makes me laugh: where do you think I've been for the past two years and eight months??
And so I am back to walking, and back in the gym-nothing to do with Unitarians, but I am finally pulling myself out of the deep hole I've been in since the whole gentamicin thing started. Andy made a point during his sermon that stayed with me (good timing, too). He said that this is the only life there is; live it.
I did say the week was strange. On Saturday I went to Islington to check out the Unitarian Church. They were having an International Women's Day celebration (a day late-what the heck, why not). The building was teeming with people. In fact, Islington was teeming with people. I had to dodge some of the people pushing their baby buggies-and the men were the worst offenders. Are these people blind, or what??
I got the chance to speak with the minister, whose name is Andy. And this is where it gets very surreal (read that as weird, very weird). He is an ordained Unitarian minister who was raised Jewish, but is an atheist. And he said that most of the congregation was also atheist. Go figure. How do you have a church with an atheist congregation, and a Jewish atheist minister? Er...pardon????
Now, I haven't been really interested in much in two years and eight months. My only real interest was survival-survival and working to get as much balance back as I could. I was really, really afraid that I would spend the rest of my life falling over, with bruises on my bruises, and alone, because who on earth would want a friend who has no balance, poor vision, and falls over without any warning? But I have to say that my interest in the Unitarians got me out of my fear of going anywhere, and yesterday I trekked over to Hackney to attend the Sunday service at the other Unitarian Church-which has stood on that spot for a hundred and something years. It was a proper church: pews with little doors at the end and all.
It really appealed to me, too. There was no dogma-Andy told me he loathes dogma, and so do I, so we were off to a good start. After a sermon on generosity-that had no mention of anyone dying for our sins, or the fact that God won't love anyone who doesn't believe in Jesus, and all that stuff (sorry, Baptists!), we had a coffee hour. I practically sprinted into the next room so I could talk with some of the congregation. And I heard from people of all ages, all backgrounds, all cultures, all beliefs, and all religions. They all had a common goal: personal growth and evolution, ignoring dogma and concentrating instead on action: what they could do for others, without judging people who believed differently from them. I thought: I like this, I'm in.
So I will go back next week, even though it is a bit of a trek to get there. I think it's worth it. People actually care about other people, about working together to build a better future...I might sound a bit Pollyanna-ish, and I certainly want to speak with more people next week-but I liked the people I met. There was no "you have to come to a housegroup/study group/church every week to prove you are a good Christian, and if you don't and aren't a good Christian, we don't want to have anything to do with you. Unitarians are so much more liberal and non-judgmental- I really enjoyed my Sunday.
I have worked very hard and I have been very much alone while I was trying to survive. I have a really close friend overseas-but she is overseas, and I don't want to dump everything all over her (by phone, too!). So it might be nice to just meditate on a Sunday with people who don't proselytize, or try to recruit me (or anyone else) with such missionary zeal-or who try to engender guilt when I'm not in church each week. Who needs that? I'm not an atheist-but I'm not a Baptist, either. No offense to anybody who is religious-but when it comes to converting me, back off!!!!!
Telling me I'll go to Hell if I don't believe makes me laugh: where do you think I've been for the past two years and eight months??
And so I am back to walking, and back in the gym-nothing to do with Unitarians, but I am finally pulling myself out of the deep hole I've been in since the whole gentamicin thing started. Andy made a point during his sermon that stayed with me (good timing, too). He said that this is the only life there is; live it.
Thursday 7 March 2013
Seeker? Finder? Lurker?
It has been one of those weeks-and I'm glad it's nearly Friday, because I want to write this one off.
I've had a lot of balance-shall we say, challenges??-this week, and my eyesight has been giving me a lot of grief. At least I know the reason for that: and next Wednesday I should have my eyeglasses, which I have to wear all the time. I will look like a headmistress. All I will need is a whip.
The weekend was okay. I challenged myself to walk a lot-I didn't go to the gym, but I walked. And I walked. And I walked. I found myself feeling a bit guilty for not going to church on Sunday. I put this down to the brainwashing of my youth: I sang in the church choir for so many years, but I didn't take any of the sermons on board. Really-if you are religious, ignore this bit-but I thought it was all a load of crap. I will probably burn in Hell-but hey, so will the majority of the rest of the world, since Christianity is only in the minority.
This all started last week, when I walked around the corner and there was one of the pillars of the Baptist Church-someone I truly wanted to avoid. Oh, we miss you at church, she said. Oh, sure you do: another one of the sheep, I guess. So I said I would go back as soon as I have the time. Oh, the implied displeasure!! I am one of the flock who escaped: an escapee, a heathen. Yep-so sue me. I've never been good at doing what I was told-especially when someone engenders guilt (or tries to. I'm at the age now where I don't fall for that!!).
Nobody has the right to tell us what to do, how to feel, or any of that-unless they are paying our bills, we don't need other people to tell us how to live our lives. Do we?
I spoke with someone in my meditation group on Monday. A few of us from the old mindfulness workshop meet every month to meditate, and generally catch up. Mostly, we meditate, and keep things general, not personal, so nobody feels like they have to divulge any personal information. It works well-although on Monday evening things did get a bit personal. One of the women was in a very deep depression, and was looking for a way out of it. I felt so badly for her. I wanted to help-to provide some comfort, to perhaps give a road map she could follow. I mentioned the gentamicin atrocity, although I was able to just talk a bit about it without any heat behind my words-so I have come a long way, working with the anger and betrayal.
I think I have been seeking a way around (or through) the anger I have felt over the last two years and seven months. And this woman's depression started me ruminating (I am so terrific at ruminating!!). I think the mindfulness aspect of just noticing how you feel, and where in the body you feel it, helps. I do think that the "live in the present, not the past or future" idea is a great idea-but here in the West it isn't so easy to accomplish. Like every other change in perception and consciousness, this all takes work, and it also takes time. One thing I learned from the experiences of the last two years and seven months: everything takes time. And healing happens in its own time, not ours. Grrrr!!! Not a pleasant truth-but a truth nevertheless.
Tomorrow is International Women's Day, and there are all kinds of events happening in London. I've decided to return to the gym (after two weeks of doing nothing. Boo hiss!!), and then go out and see what is going on. When we were talking on Monday about what we do during the day (a mindfulness exercise), I discovered (to my absolute shame) that unless I go to the hospital for some test or another, I do absolutely nothing. Eeek-this is my only life, and I am wasting it. I am totally wasting it. How saddening.
Yesterday I had to go to the Royal London to see Matt, my consultant. I had a few sleepless nights, wondering what I would say-since he lost his temper when I was an inpatient and threatened to discharge me into the community (and all because he trusts the crippler, and I do not). I was polite, and I said nothing controversial. Neither of us really knew what to say...but we both got through it, and I must admit I was rather proud of myself for keeping schtum. I am certainly not known for keeping schtum!!!! But all the faith and trust I had in him as a medical professional disappeared when he yelled at me for daring to criticize Grigoriadou. And that faith and trust will never return.
That is another thing I need to find a way around: the total loss of faith and trust in anyone at Barts and the London-in fact,the loss of faith and trust in the medical profession in this country.
Perhaps Talia (the optician) is right: I have a moral obligation to make this public. I really don't want anyone else to go through what I have been through since 2010. I'm less worried about going public than I am worried that nobody will be interested!!
I've had a lot of balance-shall we say, challenges??-this week, and my eyesight has been giving me a lot of grief. At least I know the reason for that: and next Wednesday I should have my eyeglasses, which I have to wear all the time. I will look like a headmistress. All I will need is a whip.
The weekend was okay. I challenged myself to walk a lot-I didn't go to the gym, but I walked. And I walked. And I walked. I found myself feeling a bit guilty for not going to church on Sunday. I put this down to the brainwashing of my youth: I sang in the church choir for so many years, but I didn't take any of the sermons on board. Really-if you are religious, ignore this bit-but I thought it was all a load of crap. I will probably burn in Hell-but hey, so will the majority of the rest of the world, since Christianity is only in the minority.
This all started last week, when I walked around the corner and there was one of the pillars of the Baptist Church-someone I truly wanted to avoid. Oh, we miss you at church, she said. Oh, sure you do: another one of the sheep, I guess. So I said I would go back as soon as I have the time. Oh, the implied displeasure!! I am one of the flock who escaped: an escapee, a heathen. Yep-so sue me. I've never been good at doing what I was told-especially when someone engenders guilt (or tries to. I'm at the age now where I don't fall for that!!).
Nobody has the right to tell us what to do, how to feel, or any of that-unless they are paying our bills, we don't need other people to tell us how to live our lives. Do we?
I spoke with someone in my meditation group on Monday. A few of us from the old mindfulness workshop meet every month to meditate, and generally catch up. Mostly, we meditate, and keep things general, not personal, so nobody feels like they have to divulge any personal information. It works well-although on Monday evening things did get a bit personal. One of the women was in a very deep depression, and was looking for a way out of it. I felt so badly for her. I wanted to help-to provide some comfort, to perhaps give a road map she could follow. I mentioned the gentamicin atrocity, although I was able to just talk a bit about it without any heat behind my words-so I have come a long way, working with the anger and betrayal.
I think I have been seeking a way around (or through) the anger I have felt over the last two years and seven months. And this woman's depression started me ruminating (I am so terrific at ruminating!!). I think the mindfulness aspect of just noticing how you feel, and where in the body you feel it, helps. I do think that the "live in the present, not the past or future" idea is a great idea-but here in the West it isn't so easy to accomplish. Like every other change in perception and consciousness, this all takes work, and it also takes time. One thing I learned from the experiences of the last two years and seven months: everything takes time. And healing happens in its own time, not ours. Grrrr!!! Not a pleasant truth-but a truth nevertheless.
Tomorrow is International Women's Day, and there are all kinds of events happening in London. I've decided to return to the gym (after two weeks of doing nothing. Boo hiss!!), and then go out and see what is going on. When we were talking on Monday about what we do during the day (a mindfulness exercise), I discovered (to my absolute shame) that unless I go to the hospital for some test or another, I do absolutely nothing. Eeek-this is my only life, and I am wasting it. I am totally wasting it. How saddening.
Yesterday I had to go to the Royal London to see Matt, my consultant. I had a few sleepless nights, wondering what I would say-since he lost his temper when I was an inpatient and threatened to discharge me into the community (and all because he trusts the crippler, and I do not). I was polite, and I said nothing controversial. Neither of us really knew what to say...but we both got through it, and I must admit I was rather proud of myself for keeping schtum. I am certainly not known for keeping schtum!!!! But all the faith and trust I had in him as a medical professional disappeared when he yelled at me for daring to criticize Grigoriadou. And that faith and trust will never return.
That is another thing I need to find a way around: the total loss of faith and trust in anyone at Barts and the London-in fact,the loss of faith and trust in the medical profession in this country.
Perhaps Talia (the optician) is right: I have a moral obligation to make this public. I really don't want anyone else to go through what I have been through since 2010. I'm less worried about going public than I am worried that nobody will be interested!!
Saturday 2 March 2013
And this is the latest
This has been an interesting week. The newspapers have been going all out to speculate about the South African athlete who murdered his girlfriend. When the media gets hold of something, anything can happen. It's trial by media in this country-and probably everywhere else.
I got tired of it all pretty quickly. He "allegedly" killed her because he thought she was an intruder. Of course-witnesses heard them fighting, he "allegedly" beat her up, then one of them was in the bathroom and he shot her four times. Er...I don't know who was where, but if this was an accident, I'm the Duchess of Windsor.
I have to say that-even after the first ten times this whole event was on the news-I still couldn't remember his name. I keep calling him Pistachio. Whatever. Pistorius, Pistachio-actually, who cares? I'm growing bored with all the drivel in the news-most of which is fabricated, anyway.
I've been doing my walking, but being a bit more careful about it all. My friend advised me to just pick a route-a mile or so-and time my walking without thinking about whether I do 5,000 steps or 11,000 steps. That makes good sense. At 11,500 steps-like two days ago-I am ready for resuscitation. And I might just end up with legs the size of tree trunks. Anybody ever really look at all the athetes? They look like quarterbacks-quarterbacks with no boobs. Hmmm...that's a bit gross, isn't it??
Yesterday I went to have my eyes checked. I knew there was a problem, because I've been getting some really bad headaches. The ophthalmologist at Barts last checked my eyes over a year ago, and suggested I see an optician when my eyes settle down. I think I left it a bit late.
It's a good thing I pushed myself to go. It's like going to the dentist, or the doctor: who really wants to go until it is absolutely unavoidable? And-it turns out that my vision has suffered since my last eye exam three years ago-BUT-my eyes aren't working together. I don't have one pointing one way and one pointing the other (that would be interesting!), but they aren't focusing together. The problem, said the optician, isn't with my eyes themselves, but with the lack of a vestibular system. This means that the gentamicin did more damage than just completely destroy the vestibular system. It affected my eyesight and vision, too.
It won't get worse-but it also won't get better in a hurry. So now I join the legions of people who need to wear glasses all the time. And-my glasses have a prism in each lens, so that is why I need to wear them at all times. The prisms should work the eyes so they begin to focus together. That will also help my balance. So why didn't they tell me any of this at Bart's?
Oh, what an interesting life this is! As we get older, things begin to break, calcify, drop off, head south...sad, isn't it? Of course, when we consider the alternative, growing older isn't all that bad; at least, we are still alive, even with our asses trying to touch the floor. I'm working out before my bingo wings grow bingo wings.
One interesting thing about my appointment yesterday: Talia, the optician, has known me for a few years, and she asked about the walking stick and the history. So I told her what happened. She was outraged on my behalf-she said to go to the newspapers; the radio stations in London would probably pick up the story and the Health Minister would have to respond to the question of why gentamicin is still being given when there are so many newer-and safer-antibiotics on the market, ones that will do the same job but without the hideous side effects.
Talia made a point of telling me that I am morally obligated to do this so that other people don't suffer the same fate. Actually, other people have suffered the side effects of gentamicin-so I will give it a great deal of thought. I don't want to go off (as I very nearly have several times before), make a big fuss, and end up shooting myself in the foot. I still need the immunologist at Barts-until I can sort out another one.
Well, onward and upward-and that's just my backside...time to work out. If someone found a way for people to just think about exercise and grow muscles and get stronger, they would be billionaires. Any takers?
I got tired of it all pretty quickly. He "allegedly" killed her because he thought she was an intruder. Of course-witnesses heard them fighting, he "allegedly" beat her up, then one of them was in the bathroom and he shot her four times. Er...I don't know who was where, but if this was an accident, I'm the Duchess of Windsor.
I have to say that-even after the first ten times this whole event was on the news-I still couldn't remember his name. I keep calling him Pistachio. Whatever. Pistorius, Pistachio-actually, who cares? I'm growing bored with all the drivel in the news-most of which is fabricated, anyway.
I've been doing my walking, but being a bit more careful about it all. My friend advised me to just pick a route-a mile or so-and time my walking without thinking about whether I do 5,000 steps or 11,000 steps. That makes good sense. At 11,500 steps-like two days ago-I am ready for resuscitation. And I might just end up with legs the size of tree trunks. Anybody ever really look at all the athetes? They look like quarterbacks-quarterbacks with no boobs. Hmmm...that's a bit gross, isn't it??
Yesterday I went to have my eyes checked. I knew there was a problem, because I've been getting some really bad headaches. The ophthalmologist at Barts last checked my eyes over a year ago, and suggested I see an optician when my eyes settle down. I think I left it a bit late.
It's a good thing I pushed myself to go. It's like going to the dentist, or the doctor: who really wants to go until it is absolutely unavoidable? And-it turns out that my vision has suffered since my last eye exam three years ago-BUT-my eyes aren't working together. I don't have one pointing one way and one pointing the other (that would be interesting!), but they aren't focusing together. The problem, said the optician, isn't with my eyes themselves, but with the lack of a vestibular system. This means that the gentamicin did more damage than just completely destroy the vestibular system. It affected my eyesight and vision, too.
It won't get worse-but it also won't get better in a hurry. So now I join the legions of people who need to wear glasses all the time. And-my glasses have a prism in each lens, so that is why I need to wear them at all times. The prisms should work the eyes so they begin to focus together. That will also help my balance. So why didn't they tell me any of this at Bart's?
Oh, what an interesting life this is! As we get older, things begin to break, calcify, drop off, head south...sad, isn't it? Of course, when we consider the alternative, growing older isn't all that bad; at least, we are still alive, even with our asses trying to touch the floor. I'm working out before my bingo wings grow bingo wings.
One interesting thing about my appointment yesterday: Talia, the optician, has known me for a few years, and she asked about the walking stick and the history. So I told her what happened. She was outraged on my behalf-she said to go to the newspapers; the radio stations in London would probably pick up the story and the Health Minister would have to respond to the question of why gentamicin is still being given when there are so many newer-and safer-antibiotics on the market, ones that will do the same job but without the hideous side effects.
Talia made a point of telling me that I am morally obligated to do this so that other people don't suffer the same fate. Actually, other people have suffered the side effects of gentamicin-so I will give it a great deal of thought. I don't want to go off (as I very nearly have several times before), make a big fuss, and end up shooting myself in the foot. I still need the immunologist at Barts-until I can sort out another one.
Well, onward and upward-and that's just my backside...time to work out. If someone found a way for people to just think about exercise and grow muscles and get stronger, they would be billionaires. Any takers?
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