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?

Pity doesn't help

So, it was my sister's wedding at the weekend. Everything went really well and she looked absolutely stunning. It was a beautiful day, everyone had a fabulous time, and it was fantastic to see her looking so happy.

I was having a really bad pain day though. I needed my stick, which I'd really been hoping to avoid, and the TENS machine, and I even had to have the bouquet tied to the stick and my hand, because it was too heavy for me to carry. I had to keep sitting down during the photos and by the evening, I couldn't move. It all made me feel pretty self-conscious, but I figured all eyes would be on my sister, so no-one would be paying much attention to me.

Most of the people at the wedding I didn't know, but there were a few that I'd met before and that knew about my situation, as well as some family friends who'd heard about it. I couldn't believe it though, when they started coming up to me, acting all shocked, asking me what I had done to myself this time and seeming to not quite believe me when I said it was still the same problem. The fact that I'd told them all about it before seemed to completely pass them by! It's bad enough having to explain all this the first time, round, without having to go over it again and again, especially with people looking at you like you're some kind of drama queen! Even worse though, was the pitying looks they were giving me, and the way they kept saying things like 'but you're so young!'. My godfather even started crying. It made me want to scream! I know it must be really hard to see someone struggling and in pain - and there's no way I can hide it when it's like that - but the last thing I need is people pitying me!

It's shitty situation, obviously, but pity doesn't help. Be sympathetic by all means, offer to help if there's something you can to do make things easier - let's face it, I need all the help I can get! - but please, if you're going to feel sorry for me, at least wait till I've left the room! Seeing it written all over your face doesn't make me feel any better, you know. It doesn't make the pain or the limitations any easier to bear. It just makes me feel worse, because I can see all the things I used to do, the person I used to be, reflected back in your eyes. And it kills me! You think it upsets you to see me like this - how do you think it makes me feel? I don't need any extra reminders of how much my life has changed - I get that every time I try to move! What I need from you is just to remember that underneath all this, I'm still the same person. Look beyond the sling, the walking stick, the TENS machine and the medication, and see that it's still Me.

I don't need platitudes. I don't need to hear that I'm still young. And it doesn't help for someone who has no clue what it's like, to tell me that I 'just have to stay positive' - how could they possibly know what I have to do, when they've never been there themselves, and all they've seen of my life is a tiny snapshot?

I know it's probably that they just don't know what to say. I guess disability makes people uncomfortable and they try to cover it. They feel helpless and want to say something - anything - to try and make it better. But I have many friends who manage to be there for me and help me in all sorts of ways, without making me feel like they pity me. I know they care, I know they worry, I know they're sympathetic, but they never make me feel like I'm anything less than I was before the accident. It's taken me a long time to learn to accept help and to understand that people don't resent having to do things for me, they don't think I'm being lazy or difficult, and if they've offered to help, it's because they care, so it's OK to accept. But I don't think I'm ever going to get used to feeling pitied. And to be honest, I don't want to.

Pain travels

The big problem with this pain condition is that it doesn't just affect the site of the pain, it effects my whole body.

If I'd lost my arm in the accident, it would be a lot easier (and apologies to anyone who has lost a limb and thinks this is crap, but I genuinely believe it's true). If I'd lost my arm, I'd have had a period of recovery, faced decisions about prosthetics and so on, but there would have come a time when the injury had settled and it was then all about adjusting (which I know would be a massive task - I'm not trying to minimise the effect of losing a limb). I'd have had to get used to managing without that arm, deal with the pyscological fallout etc. But at least everything else would work OK, and part of the adjustment would be learning to do two-handed things with one hand, compensating for the missing limb and so on. There are many very capable amputees out there who prove it can be done.

But it doesn't work that way for me. Not only does the injury never settle down - it's always as though it's only just happened - but the rest of my body is effected too.

Think about it - I don't have much use of my left arm. OK (well, it's not OK, obviously, but you know what I mean). But I can't just adapt to doing things with the other arm, because it's connected to both my bad shoulder and my neck, and using it sends pain through them almost as much as using the bad arm itself does (referred pain, I think they call it). Not only can I not adapt to doing things with that hand instead, I can't even do the things I used to do with it, because the pain is so bad. So I''m left almost with no arms. Same with walking - every step reverberates through my spine and causes pain in my shoulder and neck. People (even my GP!) sometimes wonder why I need to walk with a stick when the pain's in my shoulder. I've even had people challenge the fact that sometimes it's so bad it knocks me off my feet, because they can't see how pain in the upper body could effect the legs. But it's not that it 'effects' the legs, it's just that everything's connected, and pain travels.

On top of that, pain levels vary a lot, but you never know what's going to set it off. You could start the day fairly OK, then for no apparent reason it kicks off, and suddenly you can barely move. So you always have to plan for the worst, to make sure you don't find yourself stranded. But that means having to take a constantly negative view of what you can and can't do. Sometimes you're there frustrated because you know that you could have managed more, if only you had been able to guarantee nothing would change, and other times you're thanking your lucky stars that you were so 'pessimistic' about how you'd cope in a particular situation. It drives me nuts and I'm sure it doesn't help the not-so-close people understand the situation (colleagues, aquaintances, not close friends and family - they know, because they've seen it firsthand). I'm sure these other people think I'm being terribly dramatic and pessimistic in the way I approach things, and when the pain doesn't kick off, they probably think that even more. But if they saw all the other times, when it does, they'd realise that I really have no choice but to do it this way. If I banked on a good pain day, and got a bad one, how would I even get home!