Living with Ehlers-Danlos Sydrome

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I wish I could tell you it was as easy as I made it look sometimes. Today I just had to get pen to paper (as it were) and get my feelings out. Living with Ehlers-Danlos Syndrome is one of the hardest things and something that is overlooked by everyone that I know. Because I look normal, right?

What no one knows, is that I was singing in the car yesterday because I couldn’t resist a bit of Shania Twain on the radio, on the way to meet my boss in Milton Keynes. Not only did my jaw start to throb, thanks to immense amounts of TMJ, but the balls of my feet ached from pressing the pedals thanks to my new found foot deformity.

I’m on the waiting list to get my feet looked at it. I have calcifications on both feet that have formed into grotesque bunion-like buttons next to my little toes. Walking on carpet sometimes feels like I’m walking on glass and was a contribution to me leaving my last job when 4 hours of religiously driving to and from work became too much.

I’d asked to work from home, but it’s difficult to explain to someone who functions perfectly. You aren’t going to skive off work when you work from home, all I wanted to do was to work in a position that was comfortable for me for long periods of time. But things work out in the end, and now I have a job that offers me the wonderful flexibility of having a home office- and minimal pains to boot.


But yesterday was hard. Shania had given me a jaw ache so severe, that by the time I met my boss I was wincing with pain. But he was so complimentary of me that I couldn’t help but smile. By the time I had left both my meetings for the day, my face physically hurt in both good and bad ways.

I grind my teeth viciously every night lately and I don’t know why. A could physically hear it one night and said it was unsettling but I’ve been trying to make it better by wear a temporary splint until I can get seen by my dentist, but it’s not really helping and I wake up with excruciating head and jaw aches every morning.

It’s tiring.

Every morning I wake up tired. But I have the responsibilities of a normal functioning human being. If I don’t function, my work doesn’t function and my home doesn’t function. I have to lift myself out of bed every morning and fight through my weariness and pain and function- albeit with an endless supply of coffee.

The winter nights are closing in and the temperatures make my joints stiff. When I get out of bed in the morning, I feel like a skeleton clicking all it’s bones back into place. Every morning I want to scream: out of pain, out of frustration, because although I know I am not alone, especially having A, he will never truly understand how difficult it is to fulfil every day tasks.

I look normal. I am high-functioning right now, even though in the past I have had so many medical issues with my heart, eyes and kidneys – but without cutting me open, you’d never know.

I look lazy. I don’t want to get up and do things because I know it’ll hurt to move out of the one comfortable position I’ve found in hours. I’m 28 years old and should be thriving, loving life, instead I’m a crumpled mess.

Even my so-called exotic holidays. Yes, I have seen so much and done so much. But there are days when I don’t leave the hotel room, or days when I’ve taken enough pain killers to sedate a small horse. I am a fighter. One thing that I know for sure: Pain won’t stop me.

While I like to moan- I find it cathartic- I lead a better life than some living with my condition and for that I am truly grateful. While I won’t ever be able to skydive or have my eyes lasered, because of EDS, I am blessed that it’s not worse. Pain won’t stop me, but it’ll try to throw curve balls any way it can. Guess I’ve got to keep dodging them…


Today I am drinking coffee trying to keep my eyes open after yet another night of restless sleep. Then I plan on conquering cleaning the kitchen while standing on my deformed foot. But hey, I’ve always got my health, right?

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