Day In My Life For EDS Awareness Month

31 May 2015

Today is the last day of Ehlers Danlos Syndrome Awareness month but unfortunately for me its not the last day I'm stuck with it. I thought I'd tell you a bit about my day today with a kinda bad pain day but definitely not my worst. I mean I made it out of bed.

Ehlers danlos syndrome


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.

supports for Ehlers danlos syndrome
Going to bed is probably the worst part of my day because I'm exhausted in pain and a horrific stair case stands between me and my bed. I'm trying to find suitable accommodation but I can't afford anywhere myself. My brother also already has the living room as his bedroom as he can't climb the stairs at all so if I can't make it up the stairs I have to sleep on the sofa bed and share a room with my 16year old brother which is a bit strange. Plus he talks in his sleep (He shouted YOLO once). Then once I've battled the stairs I have the exhausting task of getting changed etc. My mum has to help me put my pjs on quite often which as a 22 year old just feels wrong but Im too sore and tired to do it myself. She also has to wash my hair and sometimes goes as far as helping me off the toilet and brushing my teeth. Such a fabulous life I lead.

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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