Life with Ehlers-Danlos Syndrome is a daily game of Russian Roulette and you never know the day a bullet will be fired from the gun which is your body.
I’ve been chugging along for months with no major hEDS-related issues. My ankles are stiff first thing in a morning and I walk to the bathroom like a constipated duck, my elbows give me gyp, my feet (and consequently knees and hips) are still playing me up but it’s nothing that hasn’t been there for some years now and is just my ‘normal’.
Yesterday I had a lovely afternoon out to celebrate my best friend’s birthday (more on that in my Weekly Roundup post at the weekend). I felt totally fine (for me at any rate) and went to bed early because this evening I’m going out and I wanted to be well rested. It’s my Camera Club’s annual awards ceremony and it is the only day of the entire year I go out for dinner. I’ve even treated myself to a new outfit more, it has to be said, because I’ve recently gained 7lbs and my existing clothes no longer fasten on me than because I fancied a change, and I’ve even done my once yearly finger nail paint specially for the occasion. I was hugely looking forward to my one and only night out.
I went straight to sleep and fully expected not to wake ’til 6am, but my body had other ideas. At 1am I was pulled groggily from deep slumber and knew instinctively something was up. I checked Bertie was OK, who blinked at me sleepily from his bed before sighing and going back to sleep, then realized my back was killing me. WTH?!
Three or four times in the past couple of years one of my bottom ribs has subluxed (ie partially dislocated) in my sleep and I thought that had happened again, but as I sat up I realized the pain was lower down somewhere in my lumbar spine and that is was bilateral (the rib pain usually being much worse on one side). I have no clue what I’ve done to my back and can’t believe I can go to bed without so much as a twinge and wake up 3 hours later in agony.
I’ve barely slept a wink. I can no longer lie on my back or front due to existing back pain, and no matter which side I tried to sleep on the new pain was too much. I tried my TENS machine, which made my head buzz making sleep impossible, so resorted to Ibuleve gel and a hot water bottle which did little to relieve my suffering (I’m allergic to most drugs, including pain killers, so medication is out of the question).
I can’t sodding believe my back chose this one day out of the year to conk on me. What are the fucking chances of that happening?! I’m so mad at it if it weren’t already sore I’d give a good ass whipping. So I am now sitting in bed typing this with 4 large TENS pads on and trying to ignore the fact that it’s not even touching the sides of my pain.
The health care system here in the UK is nothing like in America. I can’t just have an emergency physio or doctor’s appointment (it takes at least 2 weeks to see any old GP where I live and 6-8 weeks to get to see your regular GP), physio is only available by referral from your GP (there is a 2 month waiting list) and you can’t just request an x-ray or scan (again this is only done via your GP so could take 6 months, by which time one would hope one’s back would be better!). So self-management and wondering what the hell has happened is the order of the day.
I am still going to my dinner this evening, even though I am in agony and hugely sleep deprived. My outfit won’t look quite as nice with my TENS machine hidden underneath it and I won’t look quite so elegant on my crutches but I’m collecting my trophies come hell or high water – I can feel sorry for myself tomorrow!