Day 5: The joy of work when you’re chronically ill
You might notice that I keep missing days in this diary. That’s because — unsurprisingly — I don’t have the energy to do it every day at the moment. Also, I still cling to the idea that it’s not acceptable for me to write when my brain is at its worst. But of course, my brain is always foggy to some extent. I look back on the days, pre-ME, when my brain was sharp and everything was easy, with awe. But it’s not like that any more, and I have to accept that. Giving up on perfectionism has been one of the best things I’ve ever done, as a writer who’s also a Meep.
I can’t do office work. I can’t do any physical work — even standing up at a shop counter or being on my feet in a coffee bar. At the moment on a good week I manage to do about 12 hours of work, from home, flexibly, at my computer. On a bad week — like last week — I can manage an hour or two. So I have to be freelance — which means no employee benefits like sick or holiday pay.
In many ways I am very lucky, for a chronically ill person. I have a good degree and a history of working full time, so I have skills, experience, contacts. That’s enabled me to find the work I currently do, for a company run by friends, who are happy for me to work as many hours as I can manage. I honestly do not know how I would be surviving without that. Being in the benefits system as an unemployed, invisibly-disabled person, is an awful process, as I know from seeing friends go through it. It’s bad enough fighting for my PIP. To have to fight for ESA too, to have to prove that I can’t do just any job, to have to attend all of the appointments and jump through all the hoops… my heart sinks at the thought.
What a lot of people don’t realise about me, though, is that working a couple of hours a day often means doing *nothing else* the rest of the time. I don’t go out in the evenings. I often can’t do anything at the weekend either. Everything I have goes into doing that bit of work. The systems and strategies I’ve devised to make it possible for me to do this despite my wrecked nervous system are kind of epic, though I do say so myself.
Currently I work for half an hour, then I do 20 minutes of a different activity that doesn’t involve my brain (like laundry), then I meditate for 10 minutes. And repeat, with naps. And that only works on a good day.
Every night my partner comes home from work. I’m usually in bed by then, at the moment. He cooks, tidies up. And then he strokes me, in order to calm my brain down enough for me to be able to sleep. That’s our nightly routine. I’m very, very lucky to have the strokes. I’m very, very lucky to have the job. I am very grateful for what I have.