These days, all I can think about is sleep. When can I go back to bed? How can I fit in a few more hours? The January dark and cold doesn't help, but even on a beautiful sunny morning like today, going back to bed is all I'm looking forward to. I've only been up 20 minutes.
I've been in work for about 10 months. I think. One of the most difficult challenges at the moment is that I can't think properly. That's fine when it just lasts for a couple of days; but this has been months. More months than I can count without losing track. I know it was October things started to really slide, but my brain won't function sufficiently to work out the months between then and now.
I did start picking up a bit. But then I went to London for work, the taxi I was travelling in hit a pothole and I ended up stuck in a London hotel room with spinal dislocations and whiplash. Then, well, it's winter. So I got a bug. Then a chest infection. Then the bug just didn't clear. Somewhere in all the middle of that it was Christmas and New Year. Apart from a brief few hours with family, they went pretty unremarked. Mostly because of the 'when can I sleep again' thing. Did I mention the sleep thing?
The narrative surrounding work is that its good for you, good for your health even. I'd like to believe that. I'm sure its true for many people. Work has definitely been good for my mental health. I absolutely love my job. Working with Gary Bourlet and the other self advocates we've supported is a pleasure and enormous privilege. It gets results too. One of Gary and Shaun's ideas was warmly received by the Employment Minister who is looking into possibilities of making it work.
So yes, the job is great. My colleagues are fantastic. I'm employed on an incredibly flexible set up. I can't imagine a better employer. In theory I have the freedom to work whenever I want, so long as I get my 16 hours a week done. And of course I don't have to do them all in the one week. But the convoluted tax credits vs means test benefits rules mean I can't reduce them to say, 10 hours a week. Then I'd have to go back onto ESA. And then apply for permitted work. Politicians talk alot about how Universal Credit will be the answer to all this. But then Universal Credit functions about as well as my spine. So I shan't hold my breath.
Which was all ok. But then it was summer and I had a bit more energy. And the upper spinal dislocations weren't quite as bad at that point. But they are now. Just holding my own head up is hard work. I've seen babies with better head control than I've got. And after months of failing to be able to find the right words, to not be able to write, or to even think coherently..they're sort of coming back. A bit.
And as it turned out, there are certain types of brain damage that go hand in hand with the kind of spinal trauma I'm regularly experiencing. So having wandered around muttering "I've got brain damage" for months might've been more accurate than I'd thought.
When I tell people how hard this is, how at the moment all that's keeping me going is the thought that if it all gets too bad I can go back on ESA, but that I really do love my job. They say that's sad.
But they don't really understand. Not any of the work is good for you people. How can anyone possibly understand what this is like without being in a similar situation. Or how, even with the most supportive employer in the world, how the pressure just increases as you fall further behind the tasks you need to do, but your brain just will not work sufficiently to order or achieve anything. My employers don't put any pressure on me. But its there. Inside me. And there is an election on the way. That sort of imposes another timetable on everything.
Because we all want to believe that work is good for people. And in lots of cases it is. Apart from when it isn't. Even when I'm doing well and feeling ok, I'm managing work by not wasting spoons on anything else. Including washing and dressing. I am not convinced that is good for me. Its certainly not good for the people around me. But given I'm so exhausted I don't want to see, speak to or do anything, the dodgy smell is less of an issue than it could be.
There's alot of talk amongst disabled campaigners about moving from the Support Group to work. The holy grail for everyone is 'flexible working'. I know, I spent years believing that if I could just get the right job, with the right set up, then working would be possible.
And it sort of is. So long as I do absolutely nothing else in my life. So long as I use my 4 or so functional hours each day on nothing but work. This weekend, thinking I was getting better I went out for a few daytime hours. It was the first time since the London whiplash incident. The outside felt jarring, surreal. I went to a meeting, which if I'm honest was more work than not work, then went to bed. The next day I met an old friend for coffee. Then I went to bed. Then I started projectile vomiting. And it didn't stop. Splatter pattern ratings were assigned. As ever, when vomiting, the force pulled at my spine. All the good work my physio had done two days before was undone.
Spoonydoc has written this excellent piece in response to the current discussion about moving straight from the support group to full time work. It really is excellent, so do read it. But I can't remember the point I was trying to make anymore. I've been writing for 20 minutes or so, and awake for an hour. I'm so tired nothing will keep straight in my head. I need to go back to bed. But I also really do need to use some spoons on getting clean. The post vomit smell is bad enough for a day. Beyond that, its beyond rank.
But showering takes energy. Energy I simply don't have.
What I need is just to turn everything off. For months. To sleep as much as I need, to focus on the routine of getting washed. At least more days than not getting washed. To eat well, to spend time on physio. To try and find some form of exercises that will assist my feckless, workshy neck muscles to remember why they exist and hold my bloody head up for me.
But that's the key difference between paid work and being on an incapacity type benefit. Even if you're doing lots of voluntary work..voluntary is just that. When you need to focus on your health more than anything for an undefined period...well, you can. You have an income to allow you to do so. Sure, its not much, but unless you've also got an enormous debt, it is usually enough to keep a roof over your head, have enough to eat and pay the bills.
Other people tell me this is really sad. I already know that. I live it. I live with the sadness of never having the energy to do anything. Of knowing that I'm constantly irritable and unpleasant to be around. With the fear that what I'm doing to my body will ultimately result in a spinal dislocation so severe the cognitive impairments it causes will never go. That the voice loss won't come back. Oh and the quadriplegia risk.
I love my job. I quite like working really. Or I think I do when I'm not so exhausted. I certainly love the work Gary and I do. I must do. I don't do anything else.
But please, don't make the mistake of thinking that this is easy. Or that work really is good for everyone's health, we just need to think of work differently. Because frankly, that just isn't reality for some of us.
There was probably meant to be some sort of concluding thought to this. But I can't remember it. And I need to go back to bed.