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.

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

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.

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.

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.

At last, a glimmer of common sense

Yesterday, I went for my first McTimoney chiropractic treatment. A friend has been trying to get me to go for ages, but after bad experiences with physio and remedial massage, I was very reluctant. I'm now very much as the point of 'last resort', however, so I decided to try it.

I have to be honest and say that I can't for the life of me see how the little flicks they do could make the slightest bit of difference, but I'm keeping an open mind.

The practitioner, though, was a breath of fresh air!

He took the most detailed medical history I've ever been asked for, and was the only person not to look at me like I'm mad, or making it up, when I listed the many types of pain and neurological disturbance I have to deal with every day. It was so nice to have someone tell me it's a good idea to use a walking stick rather than fall down(!), to not sit there and tell me I should use my arm more, swing my arm naturally as I walk, relax my shoulder and all sorts of other things that are impossible with the pain. He just understood that everything I'm doing is a reaction to the pain, and an adaptation so that I can continue to function at some level. He not only understood that, he applauded it!

Thank God for someone with the common sense to see that I wouldn't be holding my arm this way, sitting this way, doing everything one-handed and walking with a stick if I didn't have to!

After taking the history, he said there was lots of diagnostic testing he could do, but it's all very 'antagonistic' and would only make things worse (he could see I was already having a bad day); a good history should be enough. A medical person with the sense to see that pulling my arm around just to see if it hurts is a bad idea? One who actually realises that I know my pain best, and doesn't argue with me about it? Unheard of!

He did a couple of very small things to start the treatment off, and then I have to go back next week. Despite being incredibly gentle, I was still in a lot of pain afterwards and had a pretty miserable evening, but he'd warned me that would probably be the case, and I'm not naive enough to think that something which could help wouldn't upset it a bit at first.

But I will be going back next time. Even if the treatment doesn't make a blind bit of difference, it was worth the money yesterday to find a medical pratctitioner who actually listened!

What's wrong with these people?

I've been doing a bit of research today into a theory I have about why my pain might have suddenly got so much worse in the last three months (more on the theory if it pans out).

I was hunting around on the net trying to verify something a neurology consultant had told me about the maximum dosage of my meds in Germany, and I came across a forum where people were talking about how much of this particular drug you can take in a day, the side effects and so on. I thought 'Great, this'll be useful, people who've maybe had similar experiences to me'. I was a bit confused at the way they kept talking about how much they loved the stuff, but I naively thought they just loved the fact that it eased their pain. Oh no. I'd stumbled onto some kind of prescription-drug-addict-forum!

When they were talking about dosage, what works and what doesn't, they weren't talking about managing pain, they were talking about getting high! (And though I realised it was an opiate-based medication, it had never occurred to me that anyone would take it for fun, largely because I didn't think it was that strong. Just goes to show.)

It made me furious though! I get so sick of constantly popping pills, having irritating reminders going off to tell me when to take them, having my whole day revolve around what pills to take when, and here are these jokers batting on about how great the pills are and how they've taken more than twice the max dosage just to get that 'lovely floaty feeling'!

Time after time I look at those bloody pills, wanting nothing more than to rebel and refuse to take them, chuck them in the bin, just have nothing to do with them. But I know from bitter, painful experience what will happen if I miss even a couple of doses in a day. God forbid I should ever go out of the house without them.

I have no choice about taking these pills, because they are the only things that keep me vaguely functioning through the pain, and here's these people doing it for fun! Not only that, these pills are addictive, so they are setting themselves up to HAVE to keep taking them (if they're not already in that position) and all for a 'good feeling'.

Seriously, what's wrong with these people?