EDS Awareness Week – What It’s Like living With A Chronic Illness.

So as a few people might already know. Its EDS awareness week. So I thought i’d talk about my experience with this condition i’ve learnt to look at like an annoying little brother who likes to pop up out of nowhere and try and trip you up.

 

What is EDS?

Well EDS is short for Ehlers Danlos Syndrome. It is a genetic defect where the collagen in our bodies is pretty much non existent. Basically it’s everything keeping my connective tissues, tendons, ligaments, blood vessels, internal organs and bones in place and working properly.

What its like to have EDS

Well I have had EDS since childbirth but didn’t get diagnosed till i was 16. For years doctors just kept telling me “it’s growing pains” and you are just accident prone.

HOW CAN GROWING PAINS CAUSE DISLOCATIONS???

So after years of being told I’m fine and that I will grow out of it one amazing little doctor looked at me one day and said “you know what, I think this might be EDS) when I was in hospital with a collapsed lung (I literally ran 100 meters playing hockey and then POP.

That doctor was the best thing to happen to me because he referred me to a genetic specialist and BAM infinite tests. Like so many they all blend into one. Arms saved in ice buckets for ages testing my blood. Being strapped to a tilt table and being flip turned upside down until i passed out. People bending my body in ways i didn’t even realise I could bend. Blood tests, tissue tests. laying in bed on a heart monitor all day long just listening to my heart. The list is endless.

After all those tests and huge analysation of my family tree I was diagnosed with Ehlers Danlos Syndrome Type 2 & 3 with Hyper-mobility. I was also one of the unlucky few EDS’rs who get diagnosed with Postural Orthostatic Tachicardia Syndrome and Mitro Valve Prolapse.

I was told I would never be able to drive because I pass out too much due to my heart problems. But when I was 18 I finally was allowed to tick that little box when applying for a drivers licence saying I hadn’t passed out in over a year. And I’ve been driving ever since thanks to my lovely little steroids keeping my heart working properly.

When i was first diagnosed they put me on a high dose of steroids and my body ballooned like crazy. I went from a UK size 6 to a UK size 16 in about a year. I had constant “moon face” which is basically where your face puffs up as there is extra fluid in your body and your face looks like the moon emoji! Also i had to rock candles for years and never being able to find rings to fit my fingers as they were constantly swelling. Some days I even woke up looking like both eyes had been stung by bees because they decided to swell overnight. POTS is not a nice tame little heart condition guys!

 

How does it affect me day to day?

Well due to my floppy joints as my family call them I tend to dislocate really randomly like cutting a block of cheese can dislocate my wrists. Im constantly walking around and BAM ankle pops out and before i know it i’ve fallen flat on my face in public. My local A&E actually knew me by name because I was in there so often getting put back together.

Now as a 23 year old my EDS doesn’t seem that bad. I’m assuming because i’ve stopped growing and less prose is put on my body. I still get constant dislocations and random pins and needles where my whole arm casually goes dead. I still get my good old “Claw Hand” where the ligaments in my fingers like to stop working and claw up for a bit.

My heart condition is not nearly as bad and touch wood, I haven’t passed out in a few years. I of course still get moments where my head goes all dizzy and i have to just plonk myself on the floor in public to what for it to pass.

As i get older new problems arise. Like recently i’ve been rocking a pregnant belly because my bladder decided it didn’t like my body anymore and give me crazy amounts of pain. But looking on the bright side of things as always can we please appreciate how funny my belly looks?

Will I ever let EDS define me as a person?

HELL NO! I am one of those annoying people who If you tell me i can’t do something because of my EDS I will go do it anyway to prove you wrong and most probably end up proving you right.

My biggest silliest F*** you to my EDS was when i was in Nepal and decided it would be a good idea to climb a mountain. Yes you heard that. Climb a mountain. And oh my it was the hardest thing i have ever pushed my weak little body to do! Two mountains two days.

Day one and I struggled. heavily stepped up knees and ankles to stop dislocating joints seemed to work. climb just under 1000ft to Nagarkot in 5 hours and so much of it was at a 45 degree angle I almost cried/passed out from the pain. Two of our group had to cave and take the bus but I managed to do it with a backpack the size and weight of a small child. But I felt like i had to do it to prove my EDS wrong. And I cannot tell you that feeling when i got to the top and laid on the floor struggling to breathe.

Day two is where it all went crazy wrong. Know your limits guys because i can tell you I DO NOT! We got half way up the second mountain and pop there goes my hip. So angry little Taylor had to hitchhike to the top of the mountain where our lift home was waiting. (Bad signal so couldn’t call him for help). Then as i got rolled out of the little mini bus by the kind strangers i hitched a lift from POP there goes my knee. Little broken Taylor laying on the floor completely broken with a beer in one hand to ease the pain and an pot of Pringles in the other because Neplai Pringles are totally better than the ones in the UK.

So I am one of those people that know my EDS will always win and mess up my day but i tend to just carry on and keep going because what will happen if i give up? My body will cave and i will be wheelchair bound for life. Screw that I’m carrying on no matter what pain I’m in.

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1 Comment

  1. May 3, 2018 / 11:10 am

    So sorry to hear of this. I have not heard of this before. Thank you for sharing

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