OK, what the fuck happened?! Last weekend I felt great: painted the side of my shed and drove myself 30 miles to the city for a mooch round the shops, then woke up Monday morning with my period and feeling like I’d been hit by a 2 ton truck. Didn’t think much of it, as my period always makes me as rough as a badger’s bum for a few days, but it’s now over and I feel worse than ever.
I am definitely ME-ish. I feel like every cell in my body is operating on 30% power and I ache all over like I’m coming down with the raging flu. My brain is cloudy with fog and there is a numb, pounding patch right between my eyes. I’m exhausted, feel dopily drugged yet can’t sleep. I’m nauseous and my throat is sore.
My mast cells are also playing up. I’ve done nothing but sneeze and have a runny nose all week, and with feeling so fluey I thought initially I was coming down with a bad cold (they’re certainly starting to do the rounds now it’s Autumn). But my nose is itchy and prickly, so it’s definitely a mast cell flare rather than a virus.
But the worst thing of all is that I’m having the worst EDS pain flare of my life so far. Every muscle, every ligament, feels both burning, stiff and sore. My ankles, my knees, my elbows, my wrists, my back, my neck………..and don’t get me started on my already painful hips. I’m shuffling around like a 90 year old and spending half my life in the bath as it’s the only place I can get relief.
Trying to make food feeling like this is tortuous. I’m struggling to stand for even short periods and my hands are so painful that trying to peel veg or lift pans makes me actually tearful. I’m living on fresh juice, toast and Cornflakes.
Since getting ME back in 1994 I’ve always gone downhill in Autumn. September is when my first symptoms appeared and for some reason is my worst time of year (well, along with January after I’ve overdone things over Christmas). It can only be the change of weather. Two weeks ago, when it was still 20C and sunny, I was feeling great. Then the rain, wind and cold arrived literally overnight and all hell has broken loose.
I’m one of those people who usually just ignores being in pain. I slather myself in Ibuleve gel, stick my TENS machine on, brace my joints and carry on regardless. But you really can’t do that with ME – if you push yourself you simply collapse, even if you have the spare energy to push yourself in the first place, which I currently don’t. I forget how soul destroyingly boring being stuck in bed all day long by yourself is – it sucks.
I’ve no idea how long this patch will last. I have a really busy few weeks planned, including travelling 200 miles to Birmingham for the EDS UK conference on 25th, but whether I’ll make it is anyone’s guess at this point. I’ll just take it a day at a time, try to relax and not worry – there’s nothing I can do about the situation so fighting it really won’t help. To make matters even worse the latest season of Teen Mom finished this week……..now that’s really made me miserable, what am I gonna watch on the telly?! 😉