Well, hooray, Christmas is over - and I'm glad of that! For one thing, this is my second Christmas as a fully fledged cripple-at least to the NHS!!
Sometimes, when I suddenly fall over, or turn my head quickly and catch myself as I fall-I feel like a cripple, too. But I have recovered some balance and visual faculties, so I try to look positively at life. That's pretty difficult.
It was just before Christmas, several years ago (nine, to be exact), that I decided to finally file for a divorce. Life was unbearable, we were both unhappy-and I couldn't bring myself to say anything at Christmastime. So-we both had a lousy time, and in early January I dropped the bombshell. I couldn't even talk to him about counselling - it was a very nasty breakup, and I have been feeling horribly guilty ever since. Every Christmas just brings it all back. I think, after nine years, it is finally time to let that go and move forward. I wanted to do that last year-but, of course, gentamicin got in the way!!!!
One very good friend phoned me last Saturday-and I phoned the rest of my friends after that-I was lucky, I got most of them at home. I felt much better afterward, but I still am a bit down, even after nearly a week!! I keep saying that I must not be down for long, because my situation could be so much worse. It could be; that doesn't make me feel a whole lot better!!
I'm lucky that I have great friends, a small group of people who have stuck with me through thick and thin over the years--and a lot more thin than thick, so far!! They have encouraged me, supported me emotionally, had a go at me when I sat around feeling sorry for myself...I think that friends have helped me through this ordeal-and this ordeal is far from over.
I don't do facebook, or any social networking sites, because - how can you have over 1,000 friends??? REALLY???? I can count my loyal ones on one hand - and loyal they certainly are!!! The rest are just numbers-although I suppose I would get this blog out to a lot more people if I broadcast it. People surf. People look for anything interesting, don't they? Well, this is interesting to me, if to nobody else.
One of the biggest problems with being on a walking stick-a hospital walking stick, not the cute canes with all kinds of designs on them, but a real medical (ugly)job- is that I am a walking target. So I will tell you what happened to me two weeks ago (today).
I decided to go out at 6pm - just around the corner to a little shop where I could buy a pint of milk. I figured- I know I am not supposed to go out after dark, since my mechanism is gone and it is difficult enough for me to stay upright during the day, let alone at night!!! So out I went, thinking that if I don't think I can make it when I reach the corner, I will turn back.
The short version: I got attacked, almost outside my front door. It wasn't a man who attacked me, but an older woman (who outweighed me by at least 100 pounds). I had no chance to even fight back. She punched, kicked, bit me, took my phone (I was trying to call the police) and smashed it, then got into her car and tried to drive into me. Imagine that!! Do I still have faith in human nature and decency? What the heck-would you?
It's a police matter now, they got her, but I'm told that the CPS (Crime Prosecution Service, also known -to me-as the Criminal Protection Service) probably won't prosecute her because no witnesses came forward, and there is no CCTV where I live. Every other corner in London has enough video cameras to collapse the lampposts holding them, but not where I live. So I may be SOL when it comes to putting this psycho behind bars (where I think she belongs).
Now: what is it about human nature and decency?? The detective in charge of the case told me that I am a prime target, since I am obviously disabled (I do dislike that term, it does make me feel like a hopeless and helpless cripple!!). Wow...this is such a lovely place in which to live.
So-that is the latest news-for the time being, at least. I'll do more before the new year rolls in.
I thought I would be boring people with this-I thought I would be boring myself with this, let alone anyone else. Perhaps I am mistaken?
I wanted to just quit so many times, and this weekend will be 72 weeks...I never thought it would be like this for so long. I get discouraged, but I'm still here, and one thing I am NOT is remotely suicidal (I'm a devout coward). I just won't give up. One of my close friends calls me a warrior princess, and sent me a crown, which made me smile (a lot) and which hangs above my bed. People are rooting for me, and pushing me when I don't feel like pushing myself. It's amazing how much that helps!
Until next time...
Thursday 29 December 2011
Friday 23 December 2011
Seventy one weeks and still counting
Oh, the frustration of not being able to get online yesterday! My computer is 11 years old - pretty good for a laptop! - but it is pretty slow. At least-it works!!
I got a text from a friend of mine yesterday, telling me she read my blog and I should keep putting my story out there. Who knows who will ultimately read it? Who knows where this will lead (if anywhere)? After 71 weeks (tomorrow), I have learned a great deal-about myself, human nature, life...someone who has been in the same position might just realize that life just has to be lived differently. And that is a very difficult understanding to reach. Trust me; I know!
You might be thinking: these three people are so guilty of medical negligence, incompetence, downright stupidity - and the arrogance of people who believe they know everything, and we patients know nothing. Sue them for malpractice!! Ah, and here is the situation, and if you have high blood pressure, sit before reading this, because I promise that your pressure will hit the roof.
In America, I could sue the toxic trio for malpractice - and I would win, because they destroyed my life, and there is no recovery from bilateral vestibular hypofunction. BUT-- this is England. In the U.K., a patient can only sue the hospital, not the doctors, unless the treatment was taken privately. Private medicine? Nice hefty lawsuit. In an NHS hospital, treated by NHS doctors (like probably 99% of the population)? The rats go scot free, and it's the NHS hospital trust that is liable. Sickening. There is no reckoning for the incompetent ones. And-the NHS consultants leave the NHS hospitals and walk across the road and practice medicine (if you can call it that) in a private practice or private hospital and make millions. So there you are. If you even think of coming over here because you think it's so much better--you're completely bonkers.
I spent a good deal of the last 71 weeks feeling very depressed, angry, anxious, bitter, and filled with hatred for the people who did this to me - not the least because they showed no remorse, no guilt, and tried (along with the hospital) to say that the gentamicin toxicity was probably not what caused the vestibular loss. It took eight months of insisting - and threatening - before I was sent to a neurologist and an ear, nose and throat specialist. Both confirmed the diagnosis: my team of imbeciles were responsible for my loss. Of course I was more than a little bit peeved. And the fact that I couldn't sue the pants off them made me even more angry. I have to admit that, along with my balance, equilibrium and ability to focus my eyes, I also lost my sense of perspective, sense of hope, and sense of humor. Gone. All gone. Life just looked like a bucket of sh*t. I couldn't understand why this happened, let alone know how to fix it.
I remember a case in the news in which a young woman (in her early 20s) was raped by her ex-boyfriend, who then had someone throw battery acid in her face. I remember this because it hit the news quite recently. She was so pretty before, but then was totally disfigured and nearly killed because of this hideous act of violence. She needed several operations. The two men were convicted and imprisoned, but it was the victim who suffered the most. What I remember so vividly is that she (Katie, her name is) went public. We saw her face, both before and after. She fought back with a vengeance, and went on to form a charity for other disfigured people. What courage! And I began to think about the policeman who was shot in the face and blinded by some psychopath up in the northeast-also not so long ago. He is fighting back, too.
I don't for a moment feel happy that I am not in their position; I don't feel either pity or sympathy for either of them, because that would be terribly disrespectful. I don't have that feeling of "thank God it was someone else and not me". In fact, I feel now-and have felt since this all began- tremendous respect and admiration to both people for carrying on, for fighting back, for (hopefully) NOT wallowing in self-pity (as I did). When I got very depressed, when I stood up and fell over, or couldn't walk, or needed help to wash myself, I remembered that there are people (and not just those in the news) who have it so much worse, but refuse to roll over and give up. There are soldiers who lost arms and legs in battle, there are people who were caught up in bombings - there are many, many people who have been damaged much more severely than me. That doesn't make me feel better. It does, however, make me want to fight harder to get as much back as I can. It makes me refuse to quit, refuse to ever acknowledge defeat, even though I have been told more than once that I will never get more than 50% of my balance faculties back - if I'm lucky, and it could take many years.
That is why I am writing this blog: I refuse to allow the toxic trio to destroy my life any longer than they have done already. If Katie, the PC, the soldiers can keep going, and keep fighting, and ignore stares, and jibes, and abuse, and the idiocy of -well, a lot of the ignorant public - people who have neither brains nor manners, then so can I.
Have a very Merry Christmas and a very Happy New Year. And keep reading this if you want to see how I'm coping. Good days and not so good days. This is one of the good ones.
I got a text from a friend of mine yesterday, telling me she read my blog and I should keep putting my story out there. Who knows who will ultimately read it? Who knows where this will lead (if anywhere)? After 71 weeks (tomorrow), I have learned a great deal-about myself, human nature, life...someone who has been in the same position might just realize that life just has to be lived differently. And that is a very difficult understanding to reach. Trust me; I know!
You might be thinking: these three people are so guilty of medical negligence, incompetence, downright stupidity - and the arrogance of people who believe they know everything, and we patients know nothing. Sue them for malpractice!! Ah, and here is the situation, and if you have high blood pressure, sit before reading this, because I promise that your pressure will hit the roof.
In America, I could sue the toxic trio for malpractice - and I would win, because they destroyed my life, and there is no recovery from bilateral vestibular hypofunction. BUT-- this is England. In the U.K., a patient can only sue the hospital, not the doctors, unless the treatment was taken privately. Private medicine? Nice hefty lawsuit. In an NHS hospital, treated by NHS doctors (like probably 99% of the population)? The rats go scot free, and it's the NHS hospital trust that is liable. Sickening. There is no reckoning for the incompetent ones. And-the NHS consultants leave the NHS hospitals and walk across the road and practice medicine (if you can call it that) in a private practice or private hospital and make millions. So there you are. If you even think of coming over here because you think it's so much better--you're completely bonkers.
I spent a good deal of the last 71 weeks feeling very depressed, angry, anxious, bitter, and filled with hatred for the people who did this to me - not the least because they showed no remorse, no guilt, and tried (along with the hospital) to say that the gentamicin toxicity was probably not what caused the vestibular loss. It took eight months of insisting - and threatening - before I was sent to a neurologist and an ear, nose and throat specialist. Both confirmed the diagnosis: my team of imbeciles were responsible for my loss. Of course I was more than a little bit peeved. And the fact that I couldn't sue the pants off them made me even more angry. I have to admit that, along with my balance, equilibrium and ability to focus my eyes, I also lost my sense of perspective, sense of hope, and sense of humor. Gone. All gone. Life just looked like a bucket of sh*t. I couldn't understand why this happened, let alone know how to fix it.
I remember a case in the news in which a young woman (in her early 20s) was raped by her ex-boyfriend, who then had someone throw battery acid in her face. I remember this because it hit the news quite recently. She was so pretty before, but then was totally disfigured and nearly killed because of this hideous act of violence. She needed several operations. The two men were convicted and imprisoned, but it was the victim who suffered the most. What I remember so vividly is that she (Katie, her name is) went public. We saw her face, both before and after. She fought back with a vengeance, and went on to form a charity for other disfigured people. What courage! And I began to think about the policeman who was shot in the face and blinded by some psychopath up in the northeast-also not so long ago. He is fighting back, too.
I don't for a moment feel happy that I am not in their position; I don't feel either pity or sympathy for either of them, because that would be terribly disrespectful. I don't have that feeling of "thank God it was someone else and not me". In fact, I feel now-and have felt since this all began- tremendous respect and admiration to both people for carrying on, for fighting back, for (hopefully) NOT wallowing in self-pity (as I did). When I got very depressed, when I stood up and fell over, or couldn't walk, or needed help to wash myself, I remembered that there are people (and not just those in the news) who have it so much worse, but refuse to roll over and give up. There are soldiers who lost arms and legs in battle, there are people who were caught up in bombings - there are many, many people who have been damaged much more severely than me. That doesn't make me feel better. It does, however, make me want to fight harder to get as much back as I can. It makes me refuse to quit, refuse to ever acknowledge defeat, even though I have been told more than once that I will never get more than 50% of my balance faculties back - if I'm lucky, and it could take many years.
That is why I am writing this blog: I refuse to allow the toxic trio to destroy my life any longer than they have done already. If Katie, the PC, the soldiers can keep going, and keep fighting, and ignore stares, and jibes, and abuse, and the idiocy of -well, a lot of the ignorant public - people who have neither brains nor manners, then so can I.
Have a very Merry Christmas and a very Happy New Year. And keep reading this if you want to see how I'm coping. Good days and not so good days. This is one of the good ones.
Wednesday 21 December 2011
The Road Back From Hell: 70 weeks and counting
Seventy weeks ago I was crippled by medical incompetence-malpractice-total stupidity. In fact, on Saturday (24th December) it will be 71 weeks. Yes-I am counting!!
My good friend Maureen suggested I keep a journal (I have) and that I blog my experiences, and tell how this mess happened. That was about 30 weeks ago-but I couldn't sit in front of a computer and see well enough to even read emails, let alone write an email or a blog. So-I said I didn't think anyone would read this. And Maureen said- all my friends will read this, even if nobody else does. Maybe somehow my experiences will help someone else. Will that make it all worthwhile?Hell, no!!! But at least I will have done something for someone else. So read on.
In July of 2010 I went into Barts Hospital in London for a two week course of an antibiotic known as gentamicin (I call it the crippler). I had a chest infection, a bug known as pseudomonas. Where did I pick this up? At the hospital, probably. And Dr. Hilary Longhurst, my consultant, wanted me to nebulise the gentamicin (I did, and I had a reaction). I told her I had a reaction, and she said that I would have this intravenously, and that my blood levels would be monitored daily (they weren't), and that I would be carefully watched (I wasn't).
Hilary then went off on two weeks holiday, and left her registrar, Dr. Phil Bright (or, as I call him, Phil not-so-Bright) in charge. He answered to Sofia Grigoriadou, the consultant who was taking her place while Hilary was away.
I began feeling really sick-I mean, REALLY sick-after the first few days of taking the gentamicin, I almost begged not-so-Bright to take me off the drug. I said I was having a reaction; he said I was imagining things. He was quite pompous, as doctors are when they think they know everything. He said "we'll watch you".
And that was the end of me: they watched me so well that the gentamicin, known to doctors as being extremely toxic, destroyed me balance mechanism completely. The damage is total; the damage is irreversible; I have no balance, I have constant vertigo, and I have very blurred vision and difficulty in focusing my eyes. So I have trouble reading, watching any television, working on the computer, and, of course, driving is out of the question (although I have to say that, even though I am visually impaired, I am probably a better driver than 98% of the people who are driving today!!).
This is called -for those of you who are reading this and are medical anoraks (like me), bilateral vestibular hypofunction. It's a fancy term for complete destruction of the vestibular mechanism, the mechanism that controls balance (and keeps you upright).
Oh-and Grigoriadou never bothered to come to see me in my five weeks in hospital, and never apologized for being incompetent. These people should not be practicing medicine. I wouldn't trust them to treat a hamster, let alone a human!!
And where are they now, nearly 18 months later? Not-so-Bright is completing his training in Bristol, at the Bristol Infirmary, I think-probably trying to maim, cripple, or kill as many poor, unsuspecting patients as he can. Grigoriadou is still at the Royal London Hospital in Whitechapel (as is Hilary Longhurst). I wonder how many notches they've got on their belts!! And I am in North London, playing dodgems with people who haven't got the brains or the courtesy to move out of the way when they see someone who is clearly disabled and visually impaired trying to walk toward them.
That is about it for now, but I will continue tomorrow. I kept a diary...this will be a continuation of that diary. But-I have learned an incredible amount in 71 weeks, and I will share that knowledge with - well, anyone who wants to read this.
Who knows? Perhaps someone out there has had something similar happen to them. Perhaps someone else has had their life destroyed by medical incompetence-and perhaps my story will help someone else carry on-regardless of the pain, the damage and the suffering.
More tomorrow.
My good friend Maureen suggested I keep a journal (I have) and that I blog my experiences, and tell how this mess happened. That was about 30 weeks ago-but I couldn't sit in front of a computer and see well enough to even read emails, let alone write an email or a blog. So-I said I didn't think anyone would read this. And Maureen said- all my friends will read this, even if nobody else does. Maybe somehow my experiences will help someone else. Will that make it all worthwhile?Hell, no!!! But at least I will have done something for someone else. So read on.
In July of 2010 I went into Barts Hospital in London for a two week course of an antibiotic known as gentamicin (I call it the crippler). I had a chest infection, a bug known as pseudomonas. Where did I pick this up? At the hospital, probably. And Dr. Hilary Longhurst, my consultant, wanted me to nebulise the gentamicin (I did, and I had a reaction). I told her I had a reaction, and she said that I would have this intravenously, and that my blood levels would be monitored daily (they weren't), and that I would be carefully watched (I wasn't).
Hilary then went off on two weeks holiday, and left her registrar, Dr. Phil Bright (or, as I call him, Phil not-so-Bright) in charge. He answered to Sofia Grigoriadou, the consultant who was taking her place while Hilary was away.
I began feeling really sick-I mean, REALLY sick-after the first few days of taking the gentamicin, I almost begged not-so-Bright to take me off the drug. I said I was having a reaction; he said I was imagining things. He was quite pompous, as doctors are when they think they know everything. He said "we'll watch you".
And that was the end of me: they watched me so well that the gentamicin, known to doctors as being extremely toxic, destroyed me balance mechanism completely. The damage is total; the damage is irreversible; I have no balance, I have constant vertigo, and I have very blurred vision and difficulty in focusing my eyes. So I have trouble reading, watching any television, working on the computer, and, of course, driving is out of the question (although I have to say that, even though I am visually impaired, I am probably a better driver than 98% of the people who are driving today!!).
This is called -for those of you who are reading this and are medical anoraks (like me), bilateral vestibular hypofunction. It's a fancy term for complete destruction of the vestibular mechanism, the mechanism that controls balance (and keeps you upright).
Oh-and Grigoriadou never bothered to come to see me in my five weeks in hospital, and never apologized for being incompetent. These people should not be practicing medicine. I wouldn't trust them to treat a hamster, let alone a human!!
And where are they now, nearly 18 months later? Not-so-Bright is completing his training in Bristol, at the Bristol Infirmary, I think-probably trying to maim, cripple, or kill as many poor, unsuspecting patients as he can. Grigoriadou is still at the Royal London Hospital in Whitechapel (as is Hilary Longhurst). I wonder how many notches they've got on their belts!! And I am in North London, playing dodgems with people who haven't got the brains or the courtesy to move out of the way when they see someone who is clearly disabled and visually impaired trying to walk toward them.
That is about it for now, but I will continue tomorrow. I kept a diary...this will be a continuation of that diary. But-I have learned an incredible amount in 71 weeks, and I will share that knowledge with - well, anyone who wants to read this.
Who knows? Perhaps someone out there has had something similar happen to them. Perhaps someone else has had their life destroyed by medical incompetence-and perhaps my story will help someone else carry on-regardless of the pain, the damage and the suffering.
More tomorrow.
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