EDS Diary #4

A weekly-ish diary of a girl with Ehlers-Danlos Syndrome living her life as best she can. This week, Unstable Unicorns, Makeovers and great friends.

11/11/19 – 17/11/19

Monday – I rested. That is all. I don’t want to talk about how bad the Sunday before was.

Tuesday – I was given the best T-Shirt today. I often describe myself as a T-Rex because of my deformed hands and arms and my big gob. So today my best mate customised a t-shirt saying Leasaurus rex. So happy. The joy was real.

Grrrr Leasaurus Rex

Wednesday – My best friend came over and we played an amazing game that I have fallen in love with. Unstable Unicorns. At first we got utterly confused with the instructions to the point we had to look at a YouTube explanation. After that we chucked the instructions and just played and we instantly got it. The game is a mix of beautiful art and comedy. I want to get my own copy it’s that good and you’ll probably see a review as soon as I do get it myself.

My best friends dog Hugo making sure he is still the center of attention

Thursday – The place I go to for my massages was having a Christmas party. So my boyfriend got me there and settled me in a chair and stayed with me until my best friend turned up. Poor hairy man surrounded by woman and pretty things. He coped quite well. 

I got a free makeover while I was there, which was nice. My friend bought me an eyebrow pencil as well so I felt utterly spoilt. But I was home and asleep by 9 because the week was already catching up to me.


Friday – I got to snuggle on my friend Magda’s sofa, complete with furry duvet and Rufus the golden retriever on my lap, while my boyfriend hung her bathroom door. We played Ni No Kuni II as I’m a studio Ghibli fan. I lasted about half an hour before I had to hand the controller to Magda so she could take control and I just rested and verbally copiloted. I need to really research the adaptive controller Microsoft have created as my hands are getting really bad.


That evening we went for a meal with my sister for her birthday. It was great but the straw that broke the camel’s back. I dislocated my ribs and was unable to pop them back in again.

Saturday – My ribs remained out and I was in agony all day. The day is a blur. Finally at bedtime I took a breath and heard an audible pop. My ribs were back in and I could finally breath!

Sunday – My hands are so bad with arthritis. My left index finger is become very deformed. So I’ve strapped it up and am using Google microphone to do most of my writing. I’ve been using it more often and I am so grateful for it. One day probably soon it will be the only way I’ll be able to write. So Huzzah to those creating verbal ways for me to write. A big thank-you for that.

Next week will probably be a very quiet week in order to recover from this week. Lets see if that actually happens. See you next week.

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