If I could accomplish one thing in 2013….

That’s an eeeaaaasy one to answer!

I’ve hardly been able to write for this November’s writing challenge. Initially because my brain falls over anyway, but then it was exacerbated by the two days of hospital tests which required coming off my meds…. eek! More symptoms to deal with, prolonged period of time for recovery and I’m still not back to my wobbly little version of ‘normal’ yet! I’ve fallen way behind in my studies because my brain won’t work and my body thinks it would rather like to pass out from time to time. Occasionally I’ve managed a blog post, but that’s about it. *sigh* Maybe next year…

When it comes to the writing challenge of the day: what the one thing is that I’d like to accomplish next year ….. I obviously have to first survive 2012! I’ve got a mere one month left to do some serious catching up whenever I can. So my yearning for an accomplishment next year is hanging on a thread surrounded by 2012’s dastardly attempts to thwart me!

I have received my disability forms for the changeover of the UK benefits from the old system to the new get-people-off-benefits-and-back-into-work system. Which we’d all adoooore, right? Working and being ‘useful’ again is central in many of our hearts. A real ‘I wish’. I can’t guarantee being able to do anything on any day, as I talked about in my recent post about health variability. And the trouble is that very few people get support to look for work that they might be able to do from home around their health, oh and the completely inapplicable yes/no tickboxes filled in by non-specialist assessors who don’t know about CRPS or Dysautonomia and who have nowhere on their tickbox forms to write anything about the crucial variability. o.O

If I plan in advance so that I can at least function in the assessment, they’ll tick boxes saying that I can function. It doesn’t matter that it took a week or two of preparation and tight activity control to get there in the first place, and it matters not one jot that it could take me weeks to recover from it. It only matters if I can touch my toes, pick up an object, talk coherently in the appointment etc. I know…. bloody stupid, right?

There is an average of 75 disabled deaths per week out of those declared ‘fit for work’. (Around 80% of disabled people are being declared ‘fit for work’, particularly those with complex or variable conditions). (The assessing companies have a financial incentive from the Governments’ Department for Work and Pensions for each individual they find ‘fit..’).

The UK disabled deaths over a period of a mere 6 weeks matches the number of UK armed forces fallen during the last 10 years in Afghanistan. And that’s just during six weeks, right? …..6 weeks of disability assessments vs 10 years of warfare created the same number of deaths. We mourn our lost soldiers, and rightly so. We don’t mourn the continuing deaths of the disabled. The figures are seen as some sort of farce, like it’s just not really the case. And when people who could be answerable are occasionally asked about it, they say that we’re more likely to die anyway. Just shrug those deaths off, why don’t you? We’re not really people anyway. It’s not like we feel or anything. Right???

Bear in mind this assessment process was declared ‘not fit for purpose’ after the original pilot study, but was rolled out anyway. It has now been distressing vulnerable disabled since 2008. Yes. That’s a lot of dead people. And yes, there’s an avoidance in the UK media about it. Only the Guardian seems to dare to speak out from time to time. Otherwise media mention is generally avoiding the issue, and yep, even the BBC is oh-so quiet about it all. Often various media coverage is a blatant misrepresentation or avoidance of the facts. Like when some papers talk about how many disabled have been declared ‘fit for work’ as if it’s some sort of success story. They choose to not mention that a vast number of appeals go through successfully, that the assessments are often found to be impossibly wrong, and they certainly don’t mention deaths other than as if they are anecdotal one-offs. The figures are ignored. Seen as irrelevant. The support for disabled people is missing. We are irrelevant. Not worth saving. Not worth fighting for. Not worth signing a petition for. (There were twice as many signatures petitioning against the UK animal tuberculosis related badgers cull). Despite the new system being fully opposed by the British Medical Association, no-one gets to hear about it as anything of any import.

It’s an incredibly distressing time for every single one of us who has a disability. We face being told we are fit for work’ when we are unable to do so. And there are a lucky few who get some kind of support to find work that might possibly be viable, but if they haven’t found viable work within a year they are also cut loose. No money. No support. Left bereft and penniless, whilst still trying to function with chronic illness and disability.

I fully expect the assessors to not comprehend my very specialist, multi-discipline progressive condition. So I’ve been trying to re-write some of my ‘What is CRPS?’ page from the blog so that they at least have some information to look at, with the references at the bottom so that they can see it’s legitimate medical science rather than my viewpoint.

I’m so very exhausted. I’m out of steam. Out of juice. Out of brain. Damn well out of nearly everything, including time.

Oh yes, and my disabled parking badge just ran out. Great timing, hey?!

The extra work and stress is causing further flare. Which impacts on my ability to do any small thing for a useful moment or two. So everything takes longer. And I fall further behind. And the stress increases.

I am worried about my studies. Genuinely concerned. Yesterday I told one of my besties that I am concerned that I might fail my course as a result of just not being able to study. I can’t think. My brain has simply not been there. For months. Stupid neurological condition. *grumble grumble*

I’m not allowing any attempts at studying at all until I can get the disability stuff sorted. Disability coherence is too important. But I can’t get my brain to work well enough for it to be anything other than painful slow-going. So I fall further and further behind. I used to be a princess of last minute assignments. Back in the day. But now I have no idea if I can think critically enough to do any studying at some point during a week or month, let alone during a day.

I don’t want to lose this. I am studying this course to help others. I am compiling research to add to the ‘state of the art’ – the current knowledge and concepts in my specialist area. I am not ‘just’ doing this for me. Though I would be so proud of myself for getting through it and producing something useful at the end of it.

Please, please, please, please, please let me be aware again. Let the meds kick in so that I might get an hour or so a week, at least. I don’t want to lose this. It is slipping away from me. I cannot grab to catch it until the disability paperwork is complete. And I cannot complete the disability paperwork until I get a bit of brain time. Round and round and round we go!

So… with everything going on a once, with the disability stuff beginning to get underway for me and all of the awful-ness that will follow, I need to do something for me. That makes me feel like I’m worth something. Valued in some way. If I could achieve one thing in 2013 it would be to finish my course. The course that I scrimped and saved for years to study. That I couldn’t do for years anyway because of my health and then I went and enrolled anyway because the qualification would have timed out. I would have always wondered. I had to try. But I want to succeed. Not like anyone else would succeed, I know I am a bear of very little brain compared to the old me, but to succeed by my modern day standards. To pass the course, and ohhhhhh I want the research to be good. Please, please, please! Let me complete the research to share with others, that could help others. And let me have my one little moment walking across that stage at the end of it all, with a photo’ of me looking self-conscious and awkward with the gown on and a silly grin, so I can look back at and say “Egads, I look awwwful”, but be so proud of myself for getting there in the first place.

2013. I’d like to leap into the new year like a ninja ready for action, but I fear I’ll crawl in by my fingertips instead. 2013, pleeeaaase let me be me, just for a while, let me pass this course and make a useful difference in the world.

<screws up eyes and wiiiiiiishes> !

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