I am 22 years past being over this illness

I have had M.E./CFS for 22 years and yet I never stop being annoyed, upset, angry when it sideswipes me. Today I had to have a nap after my morning shower because that little bit of exertion, that normal everyday routine of getting dressed, made me dizzy, weak and punch-in-the-face tired. No matter how long I’ve been ill, or how often this happens, I will never get used to it.
I’m apparently still recovering from the gig I went to on Saturday night; even though it was a gentle sit down affair and I’d felt pretty good on the day and the days prior, my body obviously objected more than I thought it would. It was definitely worth it tho, something the pacing advocates never quite get: yes the physical payback is awful, but the lift my mood receives from these lovely social events is more than worth it. Today I may feel pretty frustrated, but I’m smiling at the memories of Saturday night…


Remember the day when my body just gave up on me?

The last few days have been, um, challenging. Returned from a family visit/holiday with friends on Wednesday (5.30am start, urrggh) without my boyfriend as he has to stay and help his Mum’s business while she’s getting treatment for a shoulder problem. They don’t get on well so I anticipate many “AaaarghIcan’ttakeitherewhydidyouleavemealonewithherI’mgoingcrazy” phone calls over the next few weeks. Plus I may miss him or something. On the plane my lower back began to hurt. This coupled with my M.E. meant I went to bed as soon as I arrived at home but lo, the next day the ache had turned into full on sciatica. According to the wiki page it’s normal for people in their 30s to start getting it, most likely from spinal disc herniation, while the “nucleus pulposus is still a gelatin-like substance”. Eeeeeeeewwwww. And no, c’mon. Only old people get sciatica right?

In pain, walking bent-double like I’m 63, all I need is for there to be a letter from the government telling me some bad news. Like they’ve recalculated my housing benefit after a new housemate moved in and they’re not paying me enough anymore. Yeah, that would really help. /sarcasm So I drag myself down to the council offices to sort it out (done, no hard feelings eh, easy mistake to think the total rent for a 2bed flat in a good street would be £70/week and therefore I only need £35 for my half of it….) and return home feeling muuuuch worse. Back to bed for the next two days with the sciatica so bad I can’t even sit.

Then today I wake up and my back is better. Still sore but definitely better. Awesome. Except, my arm. My arm hurts and I can’t lift it up straight in front of me. Weirdly I can bend it at the elbow and lift it over my head like that, but straight out? No. Seriously, as Liz Lemon would say “What the what?” I do battle with my body on a daily basis anyway, why hast thou extra-forsaken me now oh pile of M.E. riddled rubbish? *sigh*

So this afternoon consists of Star Wars and this:

Nutcity Hazelnut Spread

I can’t believe it’s not Nutella!

Yes that is a spoon sticking out of it. Don’t judge me.