Sunday EDS Diary #2

A weekly diary of a girl with Ehlers-Danlos Syndrome living her life as best she can. This week, Cosplay, opening up a design shop and staying happy when your body refuses to work.

It’s been a quiet week in many ways and I’m grateful for that because I need to recharge a little as I’m still recovering from September.

Sunday – One of my best mates came round to begin making our costumes for the Destination Star Trek convention which is in a few weeks time. Yes dear readers, I am a massive Trekkie.

I have begun filming us making one of the costumes that I hope to eventually put on YouTube for you all to see, if you are into cosplay stuff. Warning: I am a novice so it’s all fun and not professional like some YouTube cosplayers.

Monday – Monday is my most productive day. I try to do as much as possible. Unlike people who hate Monday, I love Mondays. I view it as a fresh start every week and I always hope it will be my perfect week. Invariably that doesn’t happen and by Tuesday I’ve overdone it and have to stay laying for the majority of the week. But I love the hope, I love trying and getting things done. And I regret nothing for overdoing it every Monday!

Tuesday – My creative urges rose again so I picked up pen and pad and sketched a super cute punk Zebra. It represented me so well that I dared to put my design on some leggings, t-shirt, cushions etc. Yes I have started my own little store selling my designs on apparel. Do check out the link here and expect more designs to come.

Wednesday – I was in a chipper mood despite that I could not stand straight for love nor money. I wasn’t dizzy. To me I was walking straight and the walls and floor kept pouncing out at me. So I was put into my powerchair for my own safety. It’s very weird when your body can’t find its center and flails about like a newborn colt. You could say it’s even frustrating that you can’t control your own body, but I refuse to forgo my happy mood to concentrate on being frustrated. Instead my boyfriend and I simply laugh and joke about it. I am the eternal optimist.

Thursday – I went for a full body massage. I have a lovely masseuse who sees to me weekly or fortnightly. I feel massage is vital when you have EDS. So often your muscles cramp, spasm or seize up and need a little help to loosen them. In many ways we are like Olympic athletes that push their bodies to extremes, we just do it even when we are sitting still! Athletes need Masseuses to ease their taught bodies and so do we. Plus my masseuse is a dab hand at popping my ribs back in and straightening my spine. I recommend having regular massages to all.

Friday – My mother’s off to Eastbourne to visit my sister for the weekend so I get to have Bumblebee (doggie) for the Weekend. My flat is too small for pets of my own (other then my Leopard gecko and fancy goldfish) so it’s really nice when I get to look after floofs and snuggle them. Truly animals have magical healing powers.

Saturday – My spine MRIs have been rushed so I’m now booked in for the 16th. 

See you next week for another diary entry but follow me on twitter and Instagram for up to date news. Bye!

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