Although I've been writing about daily life with a disability for well over three years now the subject has never had such widespread public attention*, so egged on by my fellow benefit scrounging diarist I'm bringing you the reality behind the smiles.
My standard answer to 'how are you?' tends to be either 'fine' or 'I'm good thanks, how are you?' because really, what else can I possibly say?
I'm fine today, good, even great maybe. That's what Roland said last night when he came to take me out for dinner. At 530pm. He drove me to the pub we were eating in and after forcing me to stay in the car while he came around to help me out he patiently helped me get to the accessible entrance as I insisted on trying it out. Roland knows to be firm about insisting I stay put as he's witnessed way too many in and out of car dislocations, but seems to find the head smashing into the car roof part most distressing. It was all great, accessible, despite being up a significant slope, ready with it's doorbell to alert the staff someone needed to get in. Except the doorbell didn't work and Roland had to carry me up the steep steps himself. It's a good job I don't weigh too much or care about the 'indignity' as my friends often have to carry me to get me into places. We'll gloss over how my ribcage buckled as Roland picked me up, and how painful the pressure of increasingly collapsing ribs is, the potential damage that does to internal organs, or the dislocations during dinner that are so frequent I usually don't even mention them. We had a nice dinner while Roland chatted about how fantastic it is that I'm well enough to go out for tea and marvelled over the fact that I ate most of my meal, something that just hasn't been an option for most of the previous 12+ months as I've spent them decorating anywhere I've been with vomit. I was home by 7pm, too tired to even continue a conversation, but still somehow finding the energy to involuntarily scream when my whole shoulder girdle decided to dislocate.
So yeay me, I'm great! So great it's nearly midday and I haven't been able to find the energy or co-ordination to get washed or dressed. So great that once again I was awake at 5am, writhing in pain from the gastritis type symptoms which have been waking me up between 3 and 6am every day since sometime in October last year, which despite the most powerful medications my GP can prescribe hasn't gone away. It's got better though, I've not vomited all over my flat for at least a few weeks. Unfortunately I can't say the same for the other end of things, which don't seem to have received the same message to stop. God, pooing one's pants is undignified. I hope the NHS cuts haven't kicked in as yet now I'm waiting for a referral to a named gastro specialist. It has to be named rather than a general referral because if I end up in a clinic with a new consultant or registrar with no experience of hugely complex medical and surgical patients then they tend to panic and order all sorts of unneccessary and expensive tests or investigations because they just don't know where to start. Of course naming a doctor doesn't guarantee they'll know anything about EDS or be able to cope with such a severely affected patient, so my GP and I just had to pick the specialist most used to complex cases and hope he doesn't go wibble when confronted by me.
Ehlers Danlos Syndrome is hugely affected by the rise and falls in hormones during a woman's menstrual cycle so today really is one of the month's few good days for me. Whilst I'm wriggling and fidgeting constantly to put my slippy joints back into contact with each other I expect less major dislocations. On an amazingly good day I can count major dislocations in the 10's whereas on a bad day I can count 10's of dislocations in a matter of minutes. On a good day I don't have to worry so much about choking on food, drinks or my own saliva.
I like good days. Even if I'm still in my pj's at lunchtime. I can concentrate, mostly. On bad days I can't think or see straight and stumble in a confused state through the long hours of overwhelming pain. On good days I can read a book, write blogs, make films or speak on the radio. On bad days I don't have even enough concentration to watch a film or TV programme I've not seen before. When I was at work my boss thought I was having seizures as on bad days I did the weirdest things, especially with filing. Eventually she found a system where she could guess at some of the creative ways my morphine addled brain might have come up with to file documents but plenty were lost for good. That was before work declared me a health and safety risk for my inability to stop dislocating during working hours. I can sort of see their point...
Mmm, morphine. After spending the best part of a year withdrawing from prescribed oxycodone I've developed a healthy fear of controlled drugs. Actually that's not true. The drugs are awesome. Withdrawing however is most definitely not so awesome. Fortunately oramorph tastes like utter crap so doesn't encourage one to take it when it's needed. It also spaces me out so much I can't really function so I hate taking it in the daytime. Cannabis is far more effective and safe a painkiller but tends to get a different reaction in public than a bottle of prescribed morphine does.
I just dislocated my elbow and shoulder reaching for a cup of tea and have stopped to reduce the finger dislocations caused by typing this post.
So that's me. I'm fine. Great even**. Once I'm moved over to ESA I'm almost certain to end up in the fit for some work category. I'd like that. So long as I can find work I can do in my pyjama's from home whilst puking, pooping, dislocating, falling, ingesting morphine and all manner of other prescribed (or not) drugs.
Gizza job then. Go on, gizza.
*being ignored by the majority of the mainstream media is widespread attention when it comes to disability issues!
** Whilst writing this post the dislocations I can actually remember resetting (as opposed to doing so without consciously registering it) are at least 2 shoulders, elbow, multiple fingers, both wrists, spine, ankles and I'll do my knees and hips when I manage to get up from where I'm sitting on a dislocation reducing beanbag.