I overdid it yesterday and by overdoing it I mean I went swimming after not getting up until 11:30am. I also did a food shop with my mum but I was in my wheelchair and I spent 3 hours in the car as a passenger. That was enough to cause my body to freak out and increase my pain levels to above normal and left me battling fatigue. Pretty chuffed I managed to go swimming though even if my body freaked out at the temperature change and made me overheat and dizzy.
Today I woke up at 10am, spent about 10 minutes on my phone and had to have another nap because my pain and fatigue levels were so high and I was just exhausted. I woke up again at 11am and it took me nearly an hour to get up and make it to the toilet even though I had desperately needed to pee that whole time. I then had to have a rest and psych myself up before attempting to get off the loo because effort. Lovely titbit of info for you.
I dislocated my jaw brushing my teeth which happens most mornings to be honest. Attempting to get dressed was exhausting and by getting dressed I mean swapping my pj shorts for pj trousers, putting on a front zip sports bra and a vest top. I had to rest between each item of clothing and did what I could lying down. I didn't even attempt to brush my hair I just scraped it back and in the process I subluxed my shoulder. I tell you this getting dressed malarkey is dangerous.
Then came attempting to get downstairs and I had to do the trusty butt shuffle. Let me tell you, on a spiral staircase this is no mean feat. Damn cute old welsh cottages and their crappy stairs. I then got downstairs and realised I had forgotten to take my meds which were upstairs. I nearly cried. I couldn't even ask my mum to get them because without seeing the packet I couldn't remember which ones I needed to take so once again it was the butt shuffle and another subluxed shoulder.
I finally got downstairs at around 1ish and my mum made me breakfast/brunch but it took me a while to pluck up the energy to eat it plus my nausea was being a bitch. Scrambled egg luckily doesnt involve too much chewing
I haven't really managed to do much today and it's taken me forever to write this post because brain fog means I keep forgetting words and my concentration is shocking.
Today has been a low dislocation/injury day because I haven't really moved much which is always a plus. I also have a billion supports and bandages to try and keep me in place and have to sleep with so many cushions there's barely enough room in my bed for me. I use to cushions to prop all my joints up to keep them in place. Mainly my hips with two V shaped cushions which are life savers.
Then comes the nights of insomnia and pain where no matter how exhausted I am I just cannot sleep and any sleep I do get is not restorative and I wake up feeling even more exhausted than before I went to sleep.
It could've been worse though, on a bad day I cant even sit up in bed let alone get out of it. I spend my days with my best friend Netflix and twitter for company and if that gets too much I have to nap, because you know netflix requires buckets of energy.
If I want to do something big like go out with friends etc then I have to make sure I rest for days before and then end up wiped out for the next few days afterwards. I had to sleep for like a week after I got back from Nice. So worth it though.
Life with EDS means I can't plan much because I just never know how my body is going to be. I can go from having a good day to being bed bound within an hour. This means I have to leave things early and cancel days out a lot. I also have to try and judge whether certain activities are going to be worth the payback.
Luckily I have amazing family and friends who are so understanding and I have no idea how I would cope without their support. They are literally my lifeline and I am so grateful.
Sorry it's such a long post (Im not actually that sorry) but if you made it this far congrats give yourself a gold star. I'd be happy if I make just one person aware of EDS.
Beth...x
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