It's been a busy old month, especially for a month that's not yet halfway through. So much has happened politics wise that the point of this blog - a diary of the life of someone with severe disabilities reliant on welfare benefits - has got a bit lost. Rumours that it could be found in the middle of a morphine haze are worryingly accurate as anyone who follows me on twitter already knows.
I finally got to see my rheumatologist, who'd requested to see me three months after my last appointment in December 2010, six months late is not that long a delay for rheumatology which did not benefit from the additional funding New Labour threw into the NHS by having the misfortune to be for patients who annoyingly don't tend to get better and fit into nice, target driven tick boxes. That rheumatology is the speciality covering musculo skeletal problems which keep large numbers of people out of work seems to have been thrown onto the 'who needs logic or sense' pile by both the previous and current governments.
So, back to my rheumatologist. He's ever so nice and has enough of a sense of humour to have explained that had I not thrust my my chest out to relocate both of my shoulders so loudly during the appointment that he would have been very disappointed. I'm not sure if his disappointment would have been related to the dislocating parts or the chest thrusting parts but he's lovely so can get away with either. Plus he managed to keep a straight face when I staggered sideways into the consulting room bin so he gets points for that too. We discussed the breathing problems I've been having and I've been referred for some specialist lung function tests, with emphasis on looking at the structure of the tissue around my neck and throat to ensure it works. Quite what anyone plans to do if it appears not to work brilliantly I'm not sure at this point, but as the appointment has come through for Tuesday next week either it's been sold to a fellow consultant as being someone who's 'interesting' or they are actually a teensy bit worried I might stop breathing and not be able to start again.
Nice isn't going to get me fit for work though, not that getting fit for work is really within his capabilities as to my knowledge the man doesn't have a DNA altering machine tucked away somewhere. It's completely forgiveable that some people look at those of us campaigning so much and wonder why if we can do that we're not fit for work. I often wonder that too, especially on my rare good days, then life pulls it's usual bendy trick and manages to make the point for me.
About 10 days ago, oramorph not being conducive to accuracy, I moved my head to one side. Somehow, in that "I don't know how it happened" bendy way there was a sliding sensation in my vertebrae and a snapping noise hideous enough to disturb me as it was distinctly different from the clunking noise most joints make when they dislocate or relocate. So much so that at the time I genuinely feared I had broken my neck and went to bed that night not knowing if I'd wake up a quadriplegic. No offence is intended towards those with quadriplegia, but it's not top of my current life wish list. I consoled myself with the fact that quadriplegia might be spectacularly shit to get used to but it would at least bring the benefit of a full care package...for now.
One of the big problems for those of us with rare conditions is what we're supposed to do when such acute problems arise. Friends and boyfriend all were extremely concerned, I was in agony, not making a huge amount of sense and unable to turn my head even 45 degrees each way - a huge restriction for someone with the neck movement more typically seen in an owl. Lots of suggestions were made, that I should go to my GP, that I should go to A&E but everyone understood that there wasn't actually anything my GP or A&E could do. If I went to see my GP, great though he is, he would have looked at my blankly, asked what I thought had happened and mumbled about x-rays and A&E before making sure I had enough pain relief. If I'd gone to A&E a junior doctor with no previous knowledge or experience of Ehlers Danlos Syndrome would have seen me, quite possibly thought there was nothing wrong as I had the range of motion of a 'normal' person and dismissed me. Alternatively they'd have x-rayed me, scanned me and then started making noises about manipulating my neck, which to me is an accelerated route to quadriplegia. So, I dosed up on oramporph, tweeted utter nonsense to the internet and sat it out until my physiotherapist could see me.
It's safe to say my physio was somewhat peturbed by the state of my spine. Somehow I'd managed to rotate two vertebrae (C6 and C7) around to the left where they had got 'stuck' due to poor muscle recruitment and associated spasming. So a twisted rather than broken neck. Thirty minutes later my vertebrae were back in the position they should be and my physio had got over her panic that she might wreck her day by murdering one of her favourite patients.
I'm supposed to be in Birmingham this weekend, partly to visit my boyfriend and partly to take part in a fringe event about welfare reform at the Liberal Democrat conference. No-one's especially thrilled at my driving in this state, so I agreed that if my physio absolutely forbade it that I wouldn't go...but made it clear how important it is to me. My physio's the sensible sort so she expressed her concern and we came to a compromise. If I want to go to Birmingham I have to stop twice on the way, during what is usually a 1 hour 40 minute drive if the traffic's ok. At each stop I have to stay there for 20 minutes move around, do physio and rest. Once I get to Birmingham I have to go straight to bed and stay there until someone other than myself deems me fit enough to get out. Considering my boyfriend's unreasonable standards of wellness that probably won't be til Saturday morning!
So that's my version of 'fit for work'. You can actually acheive an awful lot smashed out of your mind on morphine if so inclined, but the accuracy of those acheivements can be a bit dubious if amusing for everyone else. That's fine when you've got no-one to answer to but yourself...but something that actual employers are much less keen on.
So yeay me. Totally fit for work, with enough drugs on board to knock out an elephant. And definitely not as much sense as an elephant while so knocked out.