Wednesday, 20 May 2015

A Day in the Life: Living with EDS


My day usually starts in the early hours of the morning, not because I wake up early, but because I don't sleep. I go through phases were I sleep for eight hours plus for a week but drop off around 2am and then 2-4 weeks of insomnia/painsomnia. My nights consist of lying in bed until around 5am counting the hours until I can have my next lot of meds or completely wide awake and begging myself to 'just fall asleep.' I didn't sleep that great last night because I was worrying about my hospital appointment.

I was up at 10am, I slept for about five hours and felt awful. As soon as I sit up, I take a handful of pills (gastro, painkillers, anti-depressants) and then stumble to the bathroom like a 'baby giraffe' (according to my boyfriend). I'm unsteady on my feet anyway, but I'm so much worse in the morning, my head is cloudy, the PoTS messes me up, I'm dizzy and off-balance. My joints are stiff, my knees ache and I generally wake up in a bad mood. Morning person I certainly am not.

I assess my pain levels before I even consider taking a shower, if my back is destroyed, I don't bother. What's the point in exacerbating things...? She says that; my back was killing today and I needed to wash my hair, I was rocking fourth day hair and no amount of dry shampoo would revive that tatty mess. Plus, I was going out. I try not to shower on days I go out, and I understand how bizarre that may sound as the norm is to shower and smell fabulous before leaving the house. I don't have that luxury, if I'm going out, I'll shower and wash my hair the day before, so after I'm dry I can spend the day recuperating; it's such a chore to get ready, it hurts. I never thought I'd be complaining about washing whilst in my 20s.

My nephew was here this afternoon so we watched Peppa Pig and he told me about his new fish, 'Geek', he's two and thinks that's a great name for a fish. Cutie.

Every four hours the alarm on my boyfriends phone went off so I could have more painkillers. I can never remember if I've taken meds or not, my memory is shocking. I just tell him when I'm having them and he sets a timer, this way I don't double-dose.

The scan was in the back of my head all day. I've had multiple MRI scans throughout my life and they never get any better, I'm claustrophobic and I can't keep still for long periods of time, my muscles hate it.

I did my make up (it looked amazing, might I add), slowly got dressed and drove to the hospital.

My boyfriend and Mum came with me. My boyfriend was allowed into the scanning room because I was nervous but before that we had to remove any metal. I had seven ear piercings in so that was effort. The nurse and radiographer were lovely and reassuring, they helped me out of my wheelchair, onto the bed and put headphones on me. I immediately jammed my eyes tightly shut. I was given a panic button but was determined not to press it. Every other time, I've buzzed repeatedly but not this time, I wanted to get it over and done with. My eyes did not open once, I knew I was enclosed in that horrible gigantic magnet but tried to focus on the music from the headphones. I was so tense that I'd clenched the muscles in my legs. After two minutes, the clenching was the most ridiculous thing I could have done because the tension turned to pain, which set off spasms. There's nothing worse than not being able to move and battling with stupid jumping nerves. This made me even more rigid. All I could think of was the pain and how badly I wanted to get out of this scanner. I hated it.

Finally, I was out. I went really lightheaded when I sat up and the muscles in my legs twitched; my boyfriend suggested that I didn't move, so I did as I was told, for a change. I knew I had jelly legs and it would have only ended in a disaster had I tried to stand. I didn't fancy an introduction to the floor.

I got straight into my pjs and bed when I got home. The pain in my shins is horrendous, the pain in my back - agony. Lying still (or kind of still) for thirty minutes has done my stupid body no good. Who knew doing nothing could hurt so much?

My evening will consist of some writing, watching TV with my boyfriend, more tablets, probably read and hopefully a long, long sleep.

Other than the MRI, this is a true representation of my life with EDS, just substitute the scan for another hospital appointment. I'm not at the hospital every day but I do usually have at least one appointment a week. I haven't had any accidents or dislocations today but it's still early. If the pain could go away, I'd very much like that as I'm exhausted. I'm that kind of tired were I could easily fall asleep on a washing line.

I hope this gave you a little insight into my life with Ehlers-Danlos Syndrome.

Sarah x


  1. Hi Sarah, really interesting/insightful I guess, to read your post.

    I've been thinking about accessibility for disabled people at work a lot recently so was good to read your story.

    Hope today hasn't been too bad :-)

    Take care



    1. Thanks for reading, Sarah, I really appreciate it. Accessibility is something I'm constantly concerned about whenever I go anywhere. Today has been fine, thank you, hope you've had a good day x


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