Today is a day of campaigning across the world for the #millionsmissing from ME/CFS. With people across the world leaving their shoes out in protest. Empty pairs of shoes there to say although we may be bed bound from the condition we deserve to be heard. That's more than 30 million people worldwide.
I've only recently been properly diagnosed with ME/CFS but over the last few years this disease has fucked over my life and I can't be the person I was before - work, travelling, money, going out - all been forced to change. I got it of the back of getting dengue fever in Thailand four years ago as it often results from never really recovering from a high fever infection.
The best analogy I've heard for it is comparing it to a shit old mobile phone that can't recharge properly. The battery just has no reserves. So a walk up some stairs or up the road knackers you out to a stupidly abnormal degree. Unrefreshing sleep, aching limbs and brainfog means it's hard to concentrate and I get tired ridiculously easily.
I end up spending days on end in bed to have a vague burst of doing something normal, like going for a coffee. Or just go sod it and know I'll have to do that afterwards if I do blast through on an ill-advised wave of booze. Obviously all this isn't great for the psyche in general. You feel like you're being lazy or daft - what the fuck is wrong with me, my arms hurt after washing my hair?! So silly. I need to rest after that? Amusingly pathetic being sat around like a useless blobfish (and I always thought my spirit animal was a yellow snail I saw in Bali once). All I can say is thank heavens for boxsets and Mousey the cat, who is sat on my bed next to me as I type.
I do feel lucky that compared to some people with it I'm still up and about at all but trying to find a balance between doing stuff and getting the rest is difficult to work out. I'm having to essentially dump a long career in PR as it's too bloody full on alongside managing the condition. So there's a lot to get my head round right now. But I'm sure new more suitable doors will open once I'm more sorted.
85% affected are women - shock horror it's taken such a long time to be taken seriously (as ever, don't forget to fuck that patriarchy!). Decades of ideas of it being in your head or merely hypochondriac women is finally being proved to be the Grade A bullshit that it is.
For ME/CFS, as a whole it seems the tide is turning, awareness raised and hopefully some proper bloody research.
For me, as a whole I'm going to make the most of the fact I can put on my shoes and leave the house today.
But I won't be forgetting all those that can't.