Tuesday, 23 February 2016

A Day In The Life: Ehlers-Danlos Syndrome


This week it's Hypermobility Syndromes Awareness Week #HMSAware and obviously it's really important to me as I have Ehlers-Danlos Syndrome Type 3. What many people don't realise is that the HMSA (a bloody amazing charity) take all hypermobility syndromes into account, not just EDS, and it's vital that the other hypermobility syndromes get enough attention and publicity as EDS does. That's why yesterday Shona guest posted on my blog and told you all about Marfan Syndrome. Other hypermobility syndromes include, pseudoxanthoma elasticum, osteogenesis imperfecta and Stickler Syndrome.

I thought I'd share what a day in my life living with chronic pain consists of; granted this is not the everyday but here we go.

Monday 22nd February 2016

I didn't sleep well, I'm going through bouts of insomnia, and dislocated my shoulder Sunday afternoon, so the nerve pain was excruciating. I feel like I slept for about twenty minutes, and was up at 9:30 because we were getting a new carpet fitted in our bedroom. 

I felt okay but had a dull ache in the bottom of my spine, I did some gentle stretches, and sent/replied to emails. I then Facetimed my Mum and brother to show them our new carpet, which might I add is super comfortable. Then my Beauty Bay order of Dose of Colors liquid lipsticks arrived - review very soon.

My hair was desperate for a wash and although I never plan to shower and wash my hair on days that I'm leaving the house as it hurts too much, I reluctantly washed my rats nest of a head. As soon as I dried and blasted my hair, I regretted it, the pain in the bottom of my back was horrendous. Not only that but I felt like I'd torn muscles in my hips, bending and moving was agonising.

Ian and I then went to Asda to pick up our shopping, I waited in the car whilst he collected it. I felt like I was about to cry as the pain in my back and hips were edging up to a 9/10. I realised that I'd not taken any pain medication for five hours and stupidly forgot my water bottle, so couldn't wait to get home.

Upon arriving at home I shouted at the house, 'GIVE ME DRUGS,' which in hindsight wasn't the best idea since we've just moved to a new place. Oh well, I needed drugs, I don't care who knows it. I obviously took my pain meds and anti-inflammatories the second I walked through the door. I spent the evening in bed with a hot water bottle, writing. I ended up throwing my hot water bottle to the bottom of the bed after an hour as it made me burn up, disturbing my temperature regulation; it took me so long to cool down, I felt awful and clammy. 

Obviously, I'm writing this on Monday night so I have no idea how my night will be but here's hoping I sleep like a baby and my pain subsides drastically.

I have no plans tomorrow, other than sending emails. I probably won't even get dressed.

Have you heard of any of the hypermobility syndromes?

5 comments:

  1. This is a great post (not great that you're going through this, but great to see more awareness of hypermobility syndromes). I have EDS, they're not sure what type yet - my brother, sister, mum and possibly my dad all have it too. My brother, sister and dad all appear to be Type 3, but my mum and I both also have several features of Type 2, and I have a couple of Type 4 features too, lucky me (not!!). I've grossed out my hypermobility physio a few times with some of the things I can do!

    Hope today is a better day for you xx

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  2. I hate that you're going through this too, but it's so reassuring to know that I'm not alone. I love what the HMSA stands for as it really doesn't matter what type of bendy we are, there are many similarities in what we experience. Xx

    Tania | When Tania Talks

    ReplyDelete
  3. I hate that you're going through this too, but it's so reassuring to know that I'm not alone. I love what the HMSA stands for as it really doesn't matter what type of bendy we are, there are many similarities in what we experience. Xx

    Tania | When Tania Talks

    ReplyDelete

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