Gathering Dust

Well as you might have seen, there haven’t really been any updates here since late August, which is as frustrating for me as it is for anyone else. I had a severe turn in my illness in September that still hasn’t been diagnosed and have had to battle to provide evidence of that illness too.

Things that I had started in July, just had to take a back seat by end of September, I only have the one pair of hands and treatment of the illness causes extreme anxiety as a side effect. So I just haven’t been able to cope with complex, troublesome aspects of my life recently, which feedback into making me feel worse and less able to sleep at night and less able to stay awake in the day. Staying in bed and just hibernating has an appeal and focusing on myself rather than helping others feels like the right thing to do at this point in time.

I’m still swimming and on track this week to potentially pass 60 lengths in a week, I take a few photos when I get chance and I still do cue up projects for myself and generally keep myself out there and active. There’s something I’m certainly not doing; sitting around doing nothing, blimey that would send me insane if I did. I’m pretty mental as it is but I always have to be doing something and this could be another reason why I just don’t have any energy. But I can feel that focusing on my health is working, I’m managing to get my sleep attacks back on track which is very important when it comes to issues with the DVLA.

Narcolepsy, it’s obvious!
Still can’t tell you what’s wrong, well I can, but nobody accepts it because a doctor hasn’t said it (many have, only to me). Through September and October I’ve had my medication changed to see what works and what doesn’t and I’m still having to go through tests, one of which involved wearing a device for two weeks in September. By the end of that month I should have been told by the consultant what the diagnosis was and he was baffled as to why his team still hadn’t done the right tests. Yet again I was told, it’s most likely Narcolepsy or Hypersomnia, but because the right tests haven’t been done a diagnosis can’t be made. I put my full faith in July into being in the right place, these were the experts, this was a sleep clinic, so that was hard to take knowing that they’ve let me down again. My tests start again at the end of November which involve hopsital stays.

Family Loss
In late September my nan unfortunatly passed away, we were there with her at the hospital when she did and that has had an effect on us, emotionally as well as physically. Aside from the obvious arranging of the funeral, attending the scattering of the ashes and everything else that goes with this sort of thing, we’ve had to clear nan’s belongings as we were evicted by the council, so a lot of my time in October has been spent on what you might consider are the more important things in life.

Employment and Support Allowance
The trouble with ESA is, well where do I start and it’s only going to get worse with these reforms coming in. Had I known what an epic battle I would have had on my hands after that medical in August, I wouldn’t have bothered. So ok, I have an illness where I need to sleep in the day, considering previous employers have wanted rid of me when my symptoms flare up, I can’t yet see a way of Narcolepsy being an acceptable illness to have in the work place (particulary when I don’t have the diagnosis). So self-employment, really seems the way to go for the time being at least, however if you’re ill how then do you make ends meet, how can you work when you get a few months where you’re just not sleeping at all at night, full stop? So I’m in some sort of no-man’s land here and it’s far from ideal.

I’ve read that a high number of ESA claimants develop high levels of anxiety. Great so, my medication makes me anxious, the ESA really does make everyone on edge and I don’t have an income. How’s anyone supposed to sleep well under these conditions?. It was after the medical examination in August that things went AWOL. Frankly the medical report in places is fictional, they’ve put things on there that I did not say and used positive things like my ability to still drive safely as a way of dismissing I potentitally am at risk of being banned from driving, as one example. I’m in the process of appealing against it and having to prepare for a tribunal. It could be a loosing battle, however if anyone wants to pick a fight about me and my illness, they really shouldn’t bother because I will go hellfire defending my illness, this is real and it’s really affecting my life.

Everyone is about to get stressed too – it’s Christmas!
I don’t deal well with Christmas these days, not with everything else going on, and the pressure to be positive and cheerful, when really the walls are coming down around you, is immense. I don’t mind my 30th birthday being a mute affair, I’m not the sort of person that appriciates big nights out and massive affairs and really groups, I’d rather just chill with a few people at a time. I’ve got a few trips planned around New Years to see a few friends who’ve really helped me not give up this year.

Perhaps when things get back on track (which they will) I’ll be more secure with everything under control, but things just seem to be too much at the moment, I’m ill but I don’t expect people to notice just how ill I am, because 1) I can hide it and 2) you’ll never see it, even if I open your eyes, you’ll not be able to get your head around why I just have to go to sleep at seemingly random times.