Tuesday, January 13, 2015

On working. And sleeping. Mostly sleeping..

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. 


Liz@jesslinworld said...

I am so sad to hear thus, though I have been aware of the struggle you were having. I agree with you that the pressure of even a (for most people) small amount of work can be too much. You need to use your energy to keep yourself well and keep your relationships and life going.
I know, also from personal experience, how hard it is to judge how much we can do. A couple of good days and all sorts of things seem possible, only to fall to pieces the next day. So frustrating.
When I had to go off sick from work as the mental and physical stress of the job was too much, I was taken aback to receive a letter from HR extolling the virtues of work and telling me how good it was for my health!
You shouldn't feel bad if you have to give up this job. You havereally given it your best and a long time of feeling under par. You still have a great contribution to make as a campaigner. Lovecliz

Clivegsd said...

I will laugh my balls off if you get past as fit for work by Maximus at any time in the future

bluehook said...

Have you heard of sick leave? I have a work ethic that says I must not take sick leave unless I'm flat on my back in hospital. And I was last October so was forced to take time off, and not just because there's no wi-fi or 3G in that particular hospital, but because I could not sit on a chair without agonising pain from my self-inflicted bulging disc. I had to take a few more weeks after I self discharged for reasons I won't go into, because of the sitting up problem. And I thought I'd start back after the festive season which wasn't very festive as I spent it lying flat on my face on a deconstructed children's bunk bed, watching Netflix through the bars on the end of the bed. But I still can't handle it and now I'm on a guilt trip and taking it out of my annual leave allocation. So, the point of all that bla... is this: go to your doctor and get a 'fit not' for a month and clean up the vomit, have a shower and sleep as much as you need. If at the end of the month you still feel as bad as you do now, rethink, but I'm betting you'll feel at least somewhat better. Give it a go because, as we both know, jobs like this don't come along that often, I know how fortunate I am to have a job that gives me similiar flexibility and a really understanding employer. If I have to give this up I know I'd succumb to depression and then... well, who knows.

Ron Graves said...

For vastly different reasons we seem to have a great many similar health problems.

Two things I know for sure, having been disabled all my life, and seriously disabled (as in unable to work, shower, bathe, etc) for 30 years. 1. work can be advantageous psychologically. 2.But physically, work can kill you. It almost killed me.

These days, even my own blog is too much for me to cope with most of the time. Gone are the days when I could churn out half a dozen posts a day - now I'm lucky to manage 3 or 4 a week, and short ones at that.

Listen to your body. Advice I should have taken much earlier.

The Goldfish said...

Yes, the "perfect job" is the one which somehow can afford you to be inactive for random indefinite periods. I so feel for you having this bad patch, with all its fear and uncertainty, stretch on through the winter. In a way, life is harder when your condition gives you better periods, when possibilities do open up, and then it's scarier and more infuriating than ever when you have a slump. It's also immensely difficult to express that there are better and worse periods when your better periods look nothing like healthy.

There's absolutely no doubt that fulfilling work can be great for people. But it's like exercise - no argument that exercise is really really good for people's bodies, brains and well-being, but not everyone can do it at all, not everyone can do it all the time and not everyone can do it without avoiding dreadful consequences.

Thinking of you, K. Hope you're keeping warm and as comfortable as possible and that things improve really soon.

misspiggy said...

Thinking of you too. You're one of the reasons why I'm still able to work almost full time - your blog helped me to articulate my issues to doctors, and I managed to get the support I needed before it was too late. I'm really sorry that you have it so tough. Your work, paid and unpaid, has already achieved so much that if you retired from paid work and blogging tomorrow, your 'human wellbeing footprint' would be bigger than most other people's. I hope you find the time it takes to get some real rest.

Kayla said...

Something that was said to me years ago... No employer is ever grateful to an employee for destroying their health in order to do their job. No one will thank you for breaking yourself for them.

If you can take sick leave or annual leave for a few weeks and just *splat* on the couch/bed to recover spoons, then try it. See how things go after that. If things don't improve, then you've given it a good shot.

You've proven, for those of us who always said it, work is not necessarily good for you. Where this idea came from... it's fucking stupid. They look at us, with our fucked up bodies and fucked up minds, most of us in so much pain that life is a blur of "when can I take more drugs?" and "Oh gods, can I go to bed now?" And they say "Oh, if you got a job you'd feel so much better!" or "maybe you should try going to the gym!" Oh, just fuck right off with that crap.

How about looking at us and respecting that perhaps, just perhaps, we might actually know what the fuck we can and can't do after years of pushing ourselves to past the point of breaking just to try to live a "normal" life.

Where was I? Oh yes... I'm sure you know this but I'll say it again anyway... take it easy; rest; try to recover; take some time off if you can; if you are still breaking, if your spine & central nervous system are still fucking you about, then regretfully it may be time to say "I did my best but work is not good for me, even with lots of help." I hope you are able to return to it, for your sake, I know you enjoy it and I remember how happy you were at the prspect of the job. Good luck.

bluehook said...

Just a thought but maybe you need your doctor to take some blood and check things like kidney and thyroid function, B1 and B12 and anything else that a real doctor would know might be causing some of your symptoms.

Anonymous said...

errrr yes B1 and B12 are excellent, as are others, as I know as a health nut. However, STRESS is the killer, and most of us are under unbearable - yes, UNBEARABLE stress.

Anonymous said...

absolutely! stress IS the killer,and most of us are under unbearable - yes, UNBEARABLE stress.
:) 100 lines, ha ha, that might get it through.
who is listening, though? :(

Tantalus said...

Go easy on yourself Khaliya. Your employer knew about your condition when they employed you. Don't feel bad about what you haven't done but feel good about all that you have got done. I see you popping up in lots of places and you provide a unique and incisive take on the situations and issues you tackle.
Sometimes we are our own most damning critics.
I recently read that day dreaming and having time to drift is when people get their best ideas and are most creative.
So treat the down time as an opportunity to let your body and brain simmer and fertilise itself. You may surprise yourself with how productive you are once you have a well deserved rest.
Hope you feel better soon.

Tantalus said...

Be kind to yourself. You were taken on and employed with the knowledge that you had a debilitating illness.
Use the downtime to let your body and mind rest. I recently read that people have their best ideas and are most creative when they give themselves time to day-dream.
Celebrate what you have done. We are often our own harshest critics. We expect much more from ourselves than is humanly possible. I've seen you popping up in all sorts of places doing valuable and interesting work. You provide a unique perspective and are who you are not just despite of your condition but because of it.
You are not a robot!
Look forward to hearing from you again soon.