Things are a lot worse today - I was awake from 5am but the back pains were so bad I had to get up at 6. I took the first morphine at 7 but my back didn't really start to ease till after the second at midday, and even then not by much. I know the back pains come from the Tramadol, so I figured it was just that it's leaving my system and the low-dose immediate release morphine just isn't enough to make up the shortfall. I was back in bed by 7.30am, feeling absolutely exhausted, aching all over and having a really upset stomach. I couldn't even lift my head off the pillow for several hours.
I didn't find this last time, but the Tramadol back-pains didn't really start till after I went back on it after trying the morphine, so that didn't seem all that surprising. I've been saying to the doctors for ages, though, that I was worried that these back pains might be indicative of dependence on the drug, because they only happened if I missed or was late with a dose, but they kept telling me not to worry. After I tried coming off it altogether late last year (to see if it was actually doing anything for the shoulder pain - it was, so I had to restart it) the problem got worse, and it seemed to go critical when I tried reducing the dose by just one pill per day a few months ago, so I had a bit of spare capacity for the bad days. I told both the GP and the pain specialist about all this, and said I was worried my body was becoming dependant on the Tramadol, but they just made non-commital noises (presumably because they had nothing else to offer).
But I've now realised that in actual fact I AM dependant on Tramadol; I've just been doing some research and discovered that most of things I had taken as side effects of the morphine yesterday, are actually Tramadol withdrawal symptoms! It didn't happen last time because I wasn't dependant at that point.
So everything that I'm going through at the moment - the overheating then feeling freezing, not being able to sleep, the back pains, the upset stomach, feeling so weak and tired I can barely move - that's all down to the Tramadol. Most of it I've had on and off for a while, but never all at once. Fortunately, it never in all these months occurred to me that increasing the dose might ease those symptoms, (I guess I'm a bit thick, but under the circumstances, I'm quite glad). The only time I considered upping it was recently, when the actual shoulder pain was getting so much worse and I just wanted to test if the reason was that the Tramadol was failing.
What's really scary about all this, though, is that I'm what you might call a 'diligent patient' - I'd read all the literature, I knew there was a 'small risk of physical dependence' and I brought it up with my doctors as soon as I became concerned. But all they did was prescribe another drug to combat the effects (which, by the way, caused serious depression)! They didn't say 'yes that's what it is' and give me the choice to do something about it, they just stepped round the issue. If I'd realised, I would have insisted on coming off it long ago!
Healthcare needs to be a partnership between practitioner and patient, but how can that be the case if there isn't honesty? I feel really betrayed by the people I trusted with my health, and health is too precious a thing to gamble with. I wouldn't do that knowingly, so why should I be put in the position where I'm doing it inadvertently? Just because I believed what my doctors told me? Morphine's no safer, either, so the same thing could happen again. At least this time I'll know not to rely on the doctors, but to trust my own instincts.
When I started writing this, I was feeling really embarrassed to have found myself in this position; I always thought (unfairly, I now realise) that these sorts of things happened to people who were weak or lazy, people who weren't really in pain or simply didn't try to stop. Now, I just feel upset and angry that it can happen to you even when you're on the look-out for it, and your doctors, far from helping prevent it, actually let it happen.
Tuesday, 14 July 2009
Monday, 13 July 2009
Morphine - day 1
I started the morphine last night. Side effects so far have been:
The spaced out thing tends to come on within half an hour of taking a pill and last for several hours afterwards; these are immediate release pills, not slow release like last time, so I get an attack of some side effects straight after each pill, and the rest just seem to be constant. At the moment I daren't drive because when the floatiness happens I just have the feeling that I wouldn't react quickly enough on the road. I got a lift to the office today and I guess I'll just have to see tomorrow.
I think at the moment the morphine is also acting a bit like anti-depressants; I feel a bit removed from my fears about it - if I don't think about it, I'm OK, but if someone starts talking to me about it, I can feel the panic surging up and it's a real struggle to push it down. This anti-dep effect isn't necessarily as encouraging as you might think - the same thing happened last time on morphine and with a couple of other things since, but then it all went to pot.
- feeling very spaced out and floaty
- body temperature out of whack (mostly much too hot, but occasionally freezing cold)
- bad nausea
- bit dizzy (different to spaced out - actually feeing like you're going to fall over)
- itching all over
- talking too loud and saying things I probably shouldn't
- feeling a bit hyper
The spaced out thing tends to come on within half an hour of taking a pill and last for several hours afterwards; these are immediate release pills, not slow release like last time, so I get an attack of some side effects straight after each pill, and the rest just seem to be constant. At the moment I daren't drive because when the floatiness happens I just have the feeling that I wouldn't react quickly enough on the road. I got a lift to the office today and I guess I'll just have to see tomorrow.
I think at the moment the morphine is also acting a bit like anti-depressants; I feel a bit removed from my fears about it - if I don't think about it, I'm OK, but if someone starts talking to me about it, I can feel the panic surging up and it's a real struggle to push it down. This anti-dep effect isn't necessarily as encouraging as you might think - the same thing happened last time on morphine and with a couple of other things since, but then it all went to pot.
Friday, 10 July 2009
Terrified
I'm scared.
The Tramadol's not working anymore. The pain doctor said the only option was morphine, so I went to my GP today. I was in so much pain I could hardly walk or talk -I don't think he was expecting that. We talked about it and he gave me the prescription. For some reason, though, my brain just kept shutting down, and the minute he stopped speaking, I couldn't remember a word he'd said. Usually I'm very good at memorizing instructions etc - dose to start on, how much to increase it by and when, that sort of thing - but today I had to ask him three times, and in the end get him to write it down. I couldn't even remember the name of the stuff and kept wondering why he was talking about some medication I've never taken!
I thought I was just having a brainless moment because of the pain, though I was a bit surprised, because it wasn't as bad as it can be, and I can usually still think better than that. Now I think it was more than that though - now I think my brain was shutting down out of fear.
I'd planned to go and get my prescriptions filled tomorrow; with the Tramadol failing, the pain is unbearable, so I wanted to start any new meds as soon as possible. But then a few minutes ago it hit me - tomorrow I'm going to be taking morphine again. And I freaked out.
I was put on morphine last year, but within a couple of weeks I went into a terrible terrible depression and was seriously suicidal. I can still remember the unbearable blackness that seemed to come down around me. Sitting there, late at night, desperately trying to get someone - anyone - to answer the phone . It wasn't just that I wanted to kill myself, it was that I knew that the next step would be realising I'd already gone too far to turn back. Like the way you keep telling yourself you're not going to complain to the people upstairs about the noise - right up until the point that you put a hole in the ceiling with the broom handle you don't even remember picking up.
It's the thought of facing that horrible blackness again that has me so freaked out now. The blackness that weighs more than the sun and pins you down and obliterates you. The blackness that drives out all the oxygen, snuffs out the light and dampens down all sound, so there's suddenly nothing there but you. So all you can see, hear or feel is It, pressing down on you. It's the way you try to make yourself so small that it can't find you, but somehow it always does. The way talking to someone can make you think it's gone, but really it's just hiding. Waiting.
That's what scares me about going back on morphine. Because even though I'll be watching out for warning signs , even though my friends are going to be looking out for me, even though I'm already taking antidepressants and that might help stave it off, I know how fast it can strike. Last time, 12 hours before I found myself drowning in blackness and contemplating the knives in the kitchen, I was feeling fine. Better than fine; I'd gone into work, had lots of compliments on how I was dressed, my hair, my nails. The pain had been bearable; things had seemed pretty OK, all things considered.
Then out of nowhere this thing swept in and took over. It tooks weeks to get the morphine out of my system and months to get over those feelings (or not, apparently). And here I am, about to start down the same road again. I'm only doing it because I truly believe there's no other way; I can't live with the pain at this level any more, and I think there's just as good a chance that if I try, it'll push me over the edge anyway. So trying a different morphine, one that's meant to have fewer side effects, makes sense I guess. I just don't want to go back to that place again, that's all.
The Tramadol's not working anymore. The pain doctor said the only option was morphine, so I went to my GP today. I was in so much pain I could hardly walk or talk -I don't think he was expecting that. We talked about it and he gave me the prescription. For some reason, though, my brain just kept shutting down, and the minute he stopped speaking, I couldn't remember a word he'd said. Usually I'm very good at memorizing instructions etc - dose to start on, how much to increase it by and when, that sort of thing - but today I had to ask him three times, and in the end get him to write it down. I couldn't even remember the name of the stuff and kept wondering why he was talking about some medication I've never taken!
I thought I was just having a brainless moment because of the pain, though I was a bit surprised, because it wasn't as bad as it can be, and I can usually still think better than that. Now I think it was more than that though - now I think my brain was shutting down out of fear.
I'd planned to go and get my prescriptions filled tomorrow; with the Tramadol failing, the pain is unbearable, so I wanted to start any new meds as soon as possible. But then a few minutes ago it hit me - tomorrow I'm going to be taking morphine again. And I freaked out.
I was put on morphine last year, but within a couple of weeks I went into a terrible terrible depression and was seriously suicidal. I can still remember the unbearable blackness that seemed to come down around me. Sitting there, late at night, desperately trying to get someone - anyone - to answer the phone . It wasn't just that I wanted to kill myself, it was that I knew that the next step would be realising I'd already gone too far to turn back. Like the way you keep telling yourself you're not going to complain to the people upstairs about the noise - right up until the point that you put a hole in the ceiling with the broom handle you don't even remember picking up.
It's the thought of facing that horrible blackness again that has me so freaked out now. The blackness that weighs more than the sun and pins you down and obliterates you. The blackness that drives out all the oxygen, snuffs out the light and dampens down all sound, so there's suddenly nothing there but you. So all you can see, hear or feel is It, pressing down on you. It's the way you try to make yourself so small that it can't find you, but somehow it always does. The way talking to someone can make you think it's gone, but really it's just hiding. Waiting.
That's what scares me about going back on morphine. Because even though I'll be watching out for warning signs , even though my friends are going to be looking out for me, even though I'm already taking antidepressants and that might help stave it off, I know how fast it can strike. Last time, 12 hours before I found myself drowning in blackness and contemplating the knives in the kitchen, I was feeling fine. Better than fine; I'd gone into work, had lots of compliments on how I was dressed, my hair, my nails. The pain had been bearable; things had seemed pretty OK, all things considered.
Then out of nowhere this thing swept in and took over. It tooks weeks to get the morphine out of my system and months to get over those feelings (or not, apparently). And here I am, about to start down the same road again. I'm only doing it because I truly believe there's no other way; I can't live with the pain at this level any more, and I think there's just as good a chance that if I try, it'll push me over the edge anyway. So trying a different morphine, one that's meant to have fewer side effects, makes sense I guess. I just don't want to go back to that place again, that's all.
Wednesday, 8 July 2009
Glossary of pain
So, here's the vocabularly that's built up among me and my little coterie of supporters over the past couple of years - I hope they won't mind my including their creations here along with my own! - plus useful terms I never wanted to have to know.
Anti-convulsants - epilepsy drugs they use to try to interrupt pain signals.
Anti-Tramadol day - day where not only is the Tramadol not providing any pain relief, it's actually making things worse by causing muscles spasms of its own
Baddy elbow - my injured shoulder; the idea of elbows seems easier for kids to grasp than shoulders, for some reason!
Bad pain day - can't move much, need stick to go out anywhere, need multiple rest periods lying down
Bag of shite - Dragon voice recognition software (don't get me started!)
Bionic woman - me, at my desk, using mobile arm supports, wearing multiple headsets and talking to the computer
Bob - Blue Badge
Chronic pain - pain that lasts more than 3 months
Common-sense bypass - affliction suffered by companies and organisations that implement strategies they say are designed to help people with disabilities, but actually just overcomplicate things past the point of reason
Complex Regional Pain Syndrome - pain that nerves are reporting when they shouldn't
Cyril - blue walking stick, blinged up (he has a bit of a sexual identity crisis!)
Dependence - needing a particular medication just to feel 'normal' (not necessarily to ease the pain). Can be precursor to addiction, but is not the same thing
Doris - sling
Droopy eye - when neck pressure affects nerves in face so one eye won't open properly
Evil pain day - you figure it out! Need stick even in the house, can't work, can't do anything, need to rest most of the time, pain so bad I can't breathe, talk or move
Flapjack alert - when stocks of flapjacks (about the only cake I can eat these days) are running dangerously low
Flapjack-deficit - no flapjacks left, run for your lives
Fluffy day- when brain goes on hols because of so much medication, and I end up talking complete crap
Foot-up - using foot to lift trolley with few bits of shopping in it into passenger side footwell of car
George - green walking stick, covered in ladybugs
Good pain day - when I can move around without my stick, only have to lie down for an hour or so during the day, can sit at my desk and work without excessive pain
Grabby-thing - pole with pincer on the end for picking things up. Actually called a Happy Hand, but that's just too stupid...
Mother Ship - electric reclining chair - even more high tech than the Star Trek chair
Neck pressure - from trapped nerves - the feeling that my head is being blown up from the inside out, like when you were a kid and you used to hang off railings and things like that, and all the blood would rush to your head
Neuropathic pain - pain that's coming from problems with the nerves themselves
Opiates - strong pain meds like Tramadol, morphine. Used to get high by people without pain - if you have pain, however, you don't get high on them, all they can do (maybe) is ease the pain
Pity fest - people going overboard feeling sorry for you, e.g. welling up or repeatedly saying 'but you're so young'
Prozac moment - when brain completely shuts down and I can't even remember my own name!
Referred pain - pain that's caused by a problem in one part of the body, but actually manifests in another
Relays - trips up and down the stairs taking the bits of shopping in one at a time
Screwdriver headache - caused by neck pressure. Feeling like a screwdriver is being pushed through one or both eyes
SEs - side effects
Selfish tit - someone who uses a disabled space when they don't need to, just because they're in a hurry (if you want the space, you can have it, as long as you take the pain too)
Shoot me - use PainGone Pen on me to try and interrupt pain signals (bit like TENS machine)
Spinny-thing - steering wheel ball
Star Trek chair - orthopaedic office chair that looks like you could control the Starship Enterprise from it
Structural engineering - the endlessly changing combination of pillows and back supports to try and enable me to sleep
Tactical sleep - rest period timed to enable me to get through e.g. a meeting or friend's visit
Tolerance - when your body has got so used to a medication that it no longer works without increasing the dose
Wired for sound - TENS machine on and ready to go
Zonked - having trouble thinking or processing information, because of medication
Anti-convulsants - epilepsy drugs they use to try to interrupt pain signals.
Anti-Tramadol day - day where not only is the Tramadol not providing any pain relief, it's actually making things worse by causing muscles spasms of its own
Baddy elbow - my injured shoulder; the idea of elbows seems easier for kids to grasp than shoulders, for some reason!
Bad pain day - can't move much, need stick to go out anywhere, need multiple rest periods lying down
Bag of shite - Dragon voice recognition software (don't get me started!)
Bionic woman - me, at my desk, using mobile arm supports, wearing multiple headsets and talking to the computer
Bob - Blue Badge
Chronic pain - pain that lasts more than 3 months
Common-sense bypass - affliction suffered by companies and organisations that implement strategies they say are designed to help people with disabilities, but actually just overcomplicate things past the point of reason
Complex Regional Pain Syndrome - pain that nerves are reporting when they shouldn't
Cyril - blue walking stick, blinged up (he has a bit of a sexual identity crisis!)
Dependence - needing a particular medication just to feel 'normal' (not necessarily to ease the pain). Can be precursor to addiction, but is not the same thing
Doris - sling
Droopy eye - when neck pressure affects nerves in face so one eye won't open properly
Evil pain day - you figure it out! Need stick even in the house, can't work, can't do anything, need to rest most of the time, pain so bad I can't breathe, talk or move
Flapjack alert - when stocks of flapjacks (about the only cake I can eat these days) are running dangerously low
Flapjack-deficit - no flapjacks left, run for your lives
Fluffy day- when brain goes on hols because of so much medication, and I end up talking complete crap
Foot-up - using foot to lift trolley with few bits of shopping in it into passenger side footwell of car
George - green walking stick, covered in ladybugs
Good pain day - when I can move around without my stick, only have to lie down for an hour or so during the day, can sit at my desk and work without excessive pain
Grabby-thing - pole with pincer on the end for picking things up. Actually called a Happy Hand, but that's just too stupid...
Mother Ship - electric reclining chair - even more high tech than the Star Trek chair
Neck pressure - from trapped nerves - the feeling that my head is being blown up from the inside out, like when you were a kid and you used to hang off railings and things like that, and all the blood would rush to your head
Neuropathic pain - pain that's coming from problems with the nerves themselves
Opiates - strong pain meds like Tramadol, morphine. Used to get high by people without pain - if you have pain, however, you don't get high on them, all they can do (maybe) is ease the pain
Pity fest - people going overboard feeling sorry for you, e.g. welling up or repeatedly saying 'but you're so young'
Prozac moment - when brain completely shuts down and I can't even remember my own name!
Referred pain - pain that's caused by a problem in one part of the body, but actually manifests in another
Relays - trips up and down the stairs taking the bits of shopping in one at a time
Screwdriver headache - caused by neck pressure. Feeling like a screwdriver is being pushed through one or both eyes
SEs - side effects
Selfish tit - someone who uses a disabled space when they don't need to, just because they're in a hurry (if you want the space, you can have it, as long as you take the pain too)
Shoot me - use PainGone Pen on me to try and interrupt pain signals (bit like TENS machine)
Spinny-thing - steering wheel ball
Star Trek chair - orthopaedic office chair that looks like you could control the Starship Enterprise from it
Structural engineering - the endlessly changing combination of pillows and back supports to try and enable me to sleep
Tactical sleep - rest period timed to enable me to get through e.g. a meeting or friend's visit
Tolerance - when your body has got so used to a medication that it no longer works without increasing the dose
Wired for sound - TENS machine on and ready to go
Zonked - having trouble thinking or processing information, because of medication
Thursday, 2 July 2009
Just Me
You wouldn't necessarily think that having someone agree with you would be a bad thing, but as it turns out, it can be.
Every time in the past when I've been to a doctor - anyone from my GP or pain consultant to the physio or neurologist - we've always debated (sometimes outright argued) some point or another. Whether it's been them blithely telling me things will improve even though they have nothing to back that up other than blind faith, or me trying to make them understand that if I follow their advice, and move my arm more, then the pain gets worse, there's always been something we've disagreed on.
It's always annoyed the hell out of me that they thought they knew more about the pain I live with everyday, than I do. I respected their theoretical knowledge and their experience, but I just wanted them to recognise that not every case is the same, and that I know my body well enough, and am intelligent enough, to maybe have a deeper understanding of the situation than they can, second-hand.
Now, though, I'm into uncharted territory and I don't like it. Now, they are agreeing with me, and it turns out that's even worse than feeling like they don't listen.
Last week I saw my pain consultant. He's a lovely guy, and has always been one of the few to really try and listen; he's never pulled any punches and he just doesn't do bullshit, for which I've always been extremely grateful. Even so, there's always been one thing or another that I've not agreed with him on, thought he hadn't entirely dealt with, or that he just didn't quite get. Going through the long explanations of how things have been since my last visit, feeeling the pressure to make him understand what's really going on - it's always been a pretty fraught and stressful experience.
This time was different though. Whether it was the letter from the GP requesting an urgent appointment, or the state of me when I finally made it into his room (barely able to stand, trouble breathing and unable to speak), but I pretty much didn't have to say a word. This time, he seemed to take one look at me, and completely get it. Not only that, when I could start speaking, everything I said, he agreed with. Yes, the Tramadol is failing, yes the only option is morphine, yes that's dangerous because I reacted so badly to it last time, yes it's now worth the risk because things are untenable as they are and they're only getting worse. Yes it's worth trying the McTimoney - who knows, it could help - yes it may make things worse before they get better, yes it's better to finish that treatment before changing the meds.
The only thing we didn't agree on was him assuring me it would get better - it wouldn't go away, but it would get better than this. If anyone else had said that, I'd have jumped on them, demanding evidence, since it just seems so bloody unlikely, but I just didn't have the energy (or the breath). And the fact that he doesn't go in for the bullshit that so many of the others do, made me think that maybe he really does believe it, and isn't just trying to make me feel better. So even though I couldn't agree with him, I didn't argue.
The thing is, though, that since that appointment I have been feeling like absolute crap. Mentally, I mean. Very depressed, tearful, can't bear to talk to anyone. And I realise it's precisely because he agreed with everything I said that I feel so bad. Always before, even when I was ranting about doctors not listening or not knowing what they were on about, I guess I've always had the sense that there must be someone out there who knows more about this than me - there must be. Somewhere there has to be someone who potentially might have the answer - it can't be that this is it. And that someone will have a whole store of knowledge - and hence possibility - that I can't access. Not being able to access that knowledge has always meant that I had no idea of its scope, and that, subconsciously, made me feel that it was limitless - if you don't know its limits, it must be because there aren't any. There was a solution out there, it was just a question of finding it. And if anyone was going to find it, this guy would be the one.
But to go in there with nothing but negative updates, and to not have him debunk at least some of them - in fact for him to sit there and agree with each and every one - has left me feeling utterly defenceless and alone. It's like there's no longer anyone or anything between me and this situation - the people I rely on for answers and advice don't know any more than I do. They have nothing left to give. I'm completely adrift, with nothing to hold on to. I'm it. Just me. And that's absolutely fucking terrifying. I feel like an egg that's lost its shell and is only held together by an invisible membrane; the tiniest touch and the whole thing will just disintegrate. Talking about the situation to anyone - even thinking about it - feels like poking a finger into that membrane, then waiting for it to rupture.
And then today I went to the McTimoney guy, who three weeks ago was all gung-ho and convinced he could help. I told him I was worried that the worsening symptoms I've had since we started the treatment might not be it getting worse before it gets better, but just it getting worse. I expected a whole spiel about having to give it time, that it's normal for this to happen, blah, blah, blah. But what he actually said was that it was a reasonable question, that my condition isn't responding in the way he'd expected and he's not sure what to do next because nothing is following the pattern that it should. We've given it another try, but he pretty much said that I need to decide if I want to continue, since we're really just guessing now.
I think I liked it better when they were all arguing with me.
Every time in the past when I've been to a doctor - anyone from my GP or pain consultant to the physio or neurologist - we've always debated (sometimes outright argued) some point or another. Whether it's been them blithely telling me things will improve even though they have nothing to back that up other than blind faith, or me trying to make them understand that if I follow their advice, and move my arm more, then the pain gets worse, there's always been something we've disagreed on.
It's always annoyed the hell out of me that they thought they knew more about the pain I live with everyday, than I do. I respected their theoretical knowledge and their experience, but I just wanted them to recognise that not every case is the same, and that I know my body well enough, and am intelligent enough, to maybe have a deeper understanding of the situation than they can, second-hand.
Now, though, I'm into uncharted territory and I don't like it. Now, they are agreeing with me, and it turns out that's even worse than feeling like they don't listen.
Last week I saw my pain consultant. He's a lovely guy, and has always been one of the few to really try and listen; he's never pulled any punches and he just doesn't do bullshit, for which I've always been extremely grateful. Even so, there's always been one thing or another that I've not agreed with him on, thought he hadn't entirely dealt with, or that he just didn't quite get. Going through the long explanations of how things have been since my last visit, feeeling the pressure to make him understand what's really going on - it's always been a pretty fraught and stressful experience.
This time was different though. Whether it was the letter from the GP requesting an urgent appointment, or the state of me when I finally made it into his room (barely able to stand, trouble breathing and unable to speak), but I pretty much didn't have to say a word. This time, he seemed to take one look at me, and completely get it. Not only that, when I could start speaking, everything I said, he agreed with. Yes, the Tramadol is failing, yes the only option is morphine, yes that's dangerous because I reacted so badly to it last time, yes it's now worth the risk because things are untenable as they are and they're only getting worse. Yes it's worth trying the McTimoney - who knows, it could help - yes it may make things worse before they get better, yes it's better to finish that treatment before changing the meds.
The only thing we didn't agree on was him assuring me it would get better - it wouldn't go away, but it would get better than this. If anyone else had said that, I'd have jumped on them, demanding evidence, since it just seems so bloody unlikely, but I just didn't have the energy (or the breath). And the fact that he doesn't go in for the bullshit that so many of the others do, made me think that maybe he really does believe it, and isn't just trying to make me feel better. So even though I couldn't agree with him, I didn't argue.
The thing is, though, that since that appointment I have been feeling like absolute crap. Mentally, I mean. Very depressed, tearful, can't bear to talk to anyone. And I realise it's precisely because he agreed with everything I said that I feel so bad. Always before, even when I was ranting about doctors not listening or not knowing what they were on about, I guess I've always had the sense that there must be someone out there who knows more about this than me - there must be. Somewhere there has to be someone who potentially might have the answer - it can't be that this is it. And that someone will have a whole store of knowledge - and hence possibility - that I can't access. Not being able to access that knowledge has always meant that I had no idea of its scope, and that, subconsciously, made me feel that it was limitless - if you don't know its limits, it must be because there aren't any. There was a solution out there, it was just a question of finding it. And if anyone was going to find it, this guy would be the one.
But to go in there with nothing but negative updates, and to not have him debunk at least some of them - in fact for him to sit there and agree with each and every one - has left me feeling utterly defenceless and alone. It's like there's no longer anyone or anything between me and this situation - the people I rely on for answers and advice don't know any more than I do. They have nothing left to give. I'm completely adrift, with nothing to hold on to. I'm it. Just me. And that's absolutely fucking terrifying. I feel like an egg that's lost its shell and is only held together by an invisible membrane; the tiniest touch and the whole thing will just disintegrate. Talking about the situation to anyone - even thinking about it - feels like poking a finger into that membrane, then waiting for it to rupture.
And then today I went to the McTimoney guy, who three weeks ago was all gung-ho and convinced he could help. I told him I was worried that the worsening symptoms I've had since we started the treatment might not be it getting worse before it gets better, but just it getting worse. I expected a whole spiel about having to give it time, that it's normal for this to happen, blah, blah, blah. But what he actually said was that it was a reasonable question, that my condition isn't responding in the way he'd expected and he's not sure what to do next because nothing is following the pattern that it should. We've given it another try, but he pretty much said that I need to decide if I want to continue, since we're really just guessing now.
I think I liked it better when they were all arguing with me.
Monday, 29 June 2009
Feels like cheating
I went for yet another hospital appointment last week, to see the Pain Specialist. It's always been a bit of a long walk from the car park to the clinic, but they've been refurbishing the hospital, creating a new entrance (it looks more like an airport, than a hospital - there's actually a Sock Shop in there!) and so now it's even further.
I'm having a particularly bad time with the pain at the moment anyway, so I was expecting it to be tough getting there, but it was far worse than I'd feared. The whole way (it's the kind of distance that would take an able-bodied person a solid 5 minutes to cover, at a brisk walk) I was having to stop and rest every third step, and it took me half an hour to get there. There was the horrid moment of trying to decide which would be less draining - trying to get up the 8 stairs linking two levels, or using the ramp which added another 50 yards to the journey (I went for the stairs) - and the humiliation of person after person walking past me staring at me as though I was putting on some kind of street entertainment. (I particularly enjoyed the obese porter who doubled back for a second look, whilst tenderly cradling his MacDonalds lunch.)
Finally, I made it to the clinic, which was mercifully quiet. The receptionist was just picking up the phone to make a call, and as I stood in the doorway, resting yet again, I said she might as well carry on, because it would take me 5 minutes just to get across the room to her. When the doctor called me in, he had time to go and do a bit of paperwork while I made my way to his room, but thank God he didn't just stand in the doorway and wait. It's bad enough hobbling round like you're 100, without feeling people's impatience while you do it!
When I left, the receptionist suggested a wheelchair and I was forced to agree - I knew I'd never make it back to the car - but I really didn't want to. I've only been in one once before, on holiday with a friend last year, when I knew she wanted to take a long walk along the boardwalk, and I couldn't, but didn't want to spoil it for her, so I agreed.
This time, as then, I felt terribly self-conscious, and like I was cheating somehow. I've been trying to work out why, and the only thing I can think is that subconsciously I see wheelchairs as only being necessary if you can't walk at all, which clearly isn't the case. But the fact that I can walk, even though often only a very short distance, and certainly not as far as I needed to, made me feel both times like I was faking it, making it up for attention. I felt like everyone was looking at me thinking 'get up you lazy cow, you don't need that thing'. (Maybe it's me that thinks I'm being lazy, not trying hard enough, but intellectually I know that's not true.)
And there's something about being pushed along with your handbag in your lap - it feels like you're passing judgement, somehow. I felt like people would think I was a Hyacinth Bucket-type - inspecting my surroundings with my nose in the air, thinking I was far too posh to walk and therefore making some poor sod push me. I know, it's mad, but it's how it felt.
And then today a disability assessor, talking about attending conferences and meetings, asked if I'd thought about using a wheelchair.
I'm having a particularly bad time with the pain at the moment anyway, so I was expecting it to be tough getting there, but it was far worse than I'd feared. The whole way (it's the kind of distance that would take an able-bodied person a solid 5 minutes to cover, at a brisk walk) I was having to stop and rest every third step, and it took me half an hour to get there. There was the horrid moment of trying to decide which would be less draining - trying to get up the 8 stairs linking two levels, or using the ramp which added another 50 yards to the journey (I went for the stairs) - and the humiliation of person after person walking past me staring at me as though I was putting on some kind of street entertainment. (I particularly enjoyed the obese porter who doubled back for a second look, whilst tenderly cradling his MacDonalds lunch.)
Finally, I made it to the clinic, which was mercifully quiet. The receptionist was just picking up the phone to make a call, and as I stood in the doorway, resting yet again, I said she might as well carry on, because it would take me 5 minutes just to get across the room to her. When the doctor called me in, he had time to go and do a bit of paperwork while I made my way to his room, but thank God he didn't just stand in the doorway and wait. It's bad enough hobbling round like you're 100, without feeling people's impatience while you do it!
When I left, the receptionist suggested a wheelchair and I was forced to agree - I knew I'd never make it back to the car - but I really didn't want to. I've only been in one once before, on holiday with a friend last year, when I knew she wanted to take a long walk along the boardwalk, and I couldn't, but didn't want to spoil it for her, so I agreed.
This time, as then, I felt terribly self-conscious, and like I was cheating somehow. I've been trying to work out why, and the only thing I can think is that subconsciously I see wheelchairs as only being necessary if you can't walk at all, which clearly isn't the case. But the fact that I can walk, even though often only a very short distance, and certainly not as far as I needed to, made me feel both times like I was faking it, making it up for attention. I felt like everyone was looking at me thinking 'get up you lazy cow, you don't need that thing'. (Maybe it's me that thinks I'm being lazy, not trying hard enough, but intellectually I know that's not true.)
And there's something about being pushed along with your handbag in your lap - it feels like you're passing judgement, somehow. I felt like people would think I was a Hyacinth Bucket-type - inspecting my surroundings with my nose in the air, thinking I was far too posh to walk and therefore making some poor sod push me. I know, it's mad, but it's how it felt.
And then today a disability assessor, talking about attending conferences and meetings, asked if I'd thought about using a wheelchair.
Tuesday, 23 June 2009
Give me one good reason
I had a chance to start again. After 29 years of being governed by emotions, reactions and neuroses I didn't understand, two years unpicking the reasons behind them and five years learning who I was, I was finally starting again. I'd done the studying, the travelling, the exploring (psychological and geographical), and I'd finally made the decision to go back to the real world. I got a new job, bought a car, I was thinking about getting a dog. I wasn't even averse to the idea of a new man. And then this happened. One lousy moment in the wrong place at the wrong time. One stupid fucking cow who couldn't keep her eyes on the road, and not only do I not have that wonderful new life I was starting, I don't even have the old one.
I didn't really get a childhood; abusive father, mother who could see everything but what was under her nose, disabled sister who obviously needed all the attention - God forbid anyone should have even noticed I was there! But I came through it, and in the end, I was even managing to shake it off (as much as you ever can). I was learning to be me, to look after myself emotionally as well as physically. And I was doing my best to give the little kid that still lives inside and still feels so hurt and betrayed, a second chance at childhood.
But what the hell am I supposed to do now? I can't give her a childhood - I can't even give myself a fucking life! It's over. I sit here, day after day, wondering how I'm going to manage to do any work, or how much time I'll have to waste lying in bed, because the pain's so bad I can't sit up. It's not about what sort of fun I can have today, where to go, what to do, who to see. It's about how do I get this glass of Coke from the kitchen to the lounge when it's too heavy for me to carry? I'm sitting here in an invisible prison with no way out. And I'm so fucking angry I just want to scream!
WHY! Why did this have to happen! Why, after all the other crap and bullshit, did I now have to put up with this? Isn't it enough that I had to live through being raped by my own father, grow up terrified of what he was going to do next and be constantly convinced that whatever it was, it must be my fault - whose else could it be? Isn't it enough that I spent my whole time wondering if my own mother actually gave a shit about any of it? Or that I was constantly terrified that if I looked away from the world for just a second, I might simply disappear? How can it be fair to go through all that, come out the other side and be doing OK, and then to have this happen? What could I possibly have done that was bad enough to deserve it? And what the fucking hell am I supposed to do now?
I wish they'd never pulled me out of that car.
I didn't really get a childhood; abusive father, mother who could see everything but what was under her nose, disabled sister who obviously needed all the attention - God forbid anyone should have even noticed I was there! But I came through it, and in the end, I was even managing to shake it off (as much as you ever can). I was learning to be me, to look after myself emotionally as well as physically. And I was doing my best to give the little kid that still lives inside and still feels so hurt and betrayed, a second chance at childhood.
But what the hell am I supposed to do now? I can't give her a childhood - I can't even give myself a fucking life! It's over. I sit here, day after day, wondering how I'm going to manage to do any work, or how much time I'll have to waste lying in bed, because the pain's so bad I can't sit up. It's not about what sort of fun I can have today, where to go, what to do, who to see. It's about how do I get this glass of Coke from the kitchen to the lounge when it's too heavy for me to carry? I'm sitting here in an invisible prison with no way out. And I'm so fucking angry I just want to scream!
WHY! Why did this have to happen! Why, after all the other crap and bullshit, did I now have to put up with this? Isn't it enough that I had to live through being raped by my own father, grow up terrified of what he was going to do next and be constantly convinced that whatever it was, it must be my fault - whose else could it be? Isn't it enough that I spent my whole time wondering if my own mother actually gave a shit about any of it? Or that I was constantly terrified that if I looked away from the world for just a second, I might simply disappear? How can it be fair to go through all that, come out the other side and be doing OK, and then to have this happen? What could I possibly have done that was bad enough to deserve it? And what the fucking hell am I supposed to do now?
I wish they'd never pulled me out of that car.
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