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.

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.

Friday, 12 June 2009

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!

Friday, 5 June 2009

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?