Liminal Luminous

a wandering, wondering space of devotion, creativity and freedom.
Disability/Chronic Illness/Mental health

Long term illness

I think that I am doing well, that I am over my illness, it was all just a short term thing and then bam! After a slightly busy week, an all day meeting in London (which was stressful on multiple counts), a day out with my mum and the following week I have to cancel my plans and pretty much spend a day in bed or the sofa and then today working from bed.

There is a rhetoric of wellness, of recovery which doesn’t allow space for chronic illnesses which fluctuate. Which are impacted by the weather, by stressful days. You can be sick or you can be ill. Not someone who is sick one day and fine the next.

And of course I buy into it. I think I am BETTER. Then, I have a relapse, a day of enforced sofa rest and doomed circumstances play out in my mind. I have been very lucky, I have managed to find work which allows me to pretty much work to my own schedule and at home. But that work is coming to an end and I haven’t found anything else yet in the 8 months I have been looking.

I can’t see any employer being happy with the fact I need to be at home most of the time and may have to juggle my hours on bad days. How can I find work which suits my circumstances? I hope to find more work doing what I’m doing, that my writing will take off, that actually I can cobble together a workload through freelance writing and coding and the work I’m doing now.

That seems possible on the good days, less so on the bad days. Chronic illness is difficult to live with, I am a black and white person, I find it difficult to cope with the fluctuations. Yesterday, according to my fitbit I slept 14 hours. Today I’ve slept 9.5 hours and I’m sure I am going to have to take a nap at some point, bringing that total up.

Fitting in ‘regular’ work around that is hard. Not to mention the fact there is still, STILL, a part of my brain screaming at me that I am being pathetic and if I just tried harder I could go back to working in an office or a college full time. It’s not that long ago that I was working full time. I am essentially weak willed and if I just sucked it up a little better I could get back to earning lots of money, with a stable job and a career trajectory.

That’s a lie. Obviously. But depression, which surprisingly enough is never far away when you have a chronic illness, is an evil lying bastard.

So today, I am going to be kind, I’m still in bed, and its 9.45am. I am going to take Buster for a very gentle walk over the field, and then see how I feel. I maybe able to get on with some writing, or I may have to go back to bed to sleep. Either way, I know that I am in London tomorrow and then in a client’s office on Thursday, both of which are utterly exhausting for me. So I do need to take it easy today, I have my flute lesson later on today and I will make a call about that at lunchtime. Luckily I have an awesome teacher who understands the nature of chronic illness.

Please don’t worry – this post was written a couple of weeks ago, and is why there hasn’t been much posting of late, I’ll explain in the next post!

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