My life with EDS….

I know I post a lot on twitter and Facebook to try and raise awareness – but I’ve decided to write down my journey, good, bad, and ugly – so thank you so much if you have taken time to read this :).

EhlersDanlos syndromes (EDS) are a group of genetic connective tissue disorders. Symptoms may include loose joints, joint pain, stretchy skin, and abnormal scar formation. It often takes many many years for a formal diagnosis.

As I have hEds – I have decided to list some of the weird and wonderful things that come along with it..

People with hEDS may have:

• joint hypermobility

• loose, unstable joints that dislocate easily

joint pain and clicking joints

• extreme tiredness (fatigue)

• skin that bruises easily

• digestive problems, such as heartburn and constipation

dizziness and an increased heart rate after standing up

• problems with internal organs, such as mitral valve prolapse or organ prolapse

• problems with bladder control (stress incontinence)

• Pregnancy complications

• Slow gut movement

There’s many more – but they are the main ones!

I was strangely diagnosed after an eye test – they found white blood cells in the back of my eye (you can get sensory problems too, eyes, ears etc) and sent me to a rheumatologist. I was 28 when I was diagnosed.

At the time, I will be honest I had never heard of it and I was slightly scared. But I carried on going on my long walks – my body would always ache after but I thought that was just from walking too far. It turns out it was the EDS. I used to come in and get straight in a shower or shabath (sit down shower haha).

It’s only when you sit back and research it, that pieces of your childhood jigsaw start to piece together & you realise you weren’t in fact an unlucky clumsy child… and then it got worse.

I was walking 6 miles a day at work, and getting progressively worse but kept going , until one day my body wouldn’t physically let me any more. I couldn’t move, my knee had displaced and I ended up in a&e. (I don’t bother going now, we have putting them back in to a fine art ha)

But it’s the inward bits that people don’t see, which is why I’m trying to share my journey with people.

The pain is constant, it is draining, but then you don’t sleep because of painsomnia. A viscous circle.

People with EDS don’t tend to absorb medication and even certain foods too well either – I have been on tramadol and had no relief. The same for morphine.

I have gut issues, I have bladder incontinence for which I get Botox (designer bladder!) and yes, I have soiled myself when I have lost control of my bottom muscles.

My partner has been an absolute godsend helping me; bathe, change,do my hair, push me in my chair, take me on days out to places I like – basically everything.

I have constant crutches and braces on, and just the other day was sat on the sofa and my shoulder just popped out. Just like that, I wasn’t even moving.

This is the difficulty of EDS because it has so many different aspects under the surface people can’t see. I’m stubborn, I won’t refer to myself as disabled, instead using the term differently abled. I understand some people don’t like this term – but it works for me.

I still try and do what I used to, just with adaptations. I have my mobility scooter which gives me more freedom (I haven’t driven my car since February this year). And I have my crutches and chair. The only problem with crutches is 1. They make you even MORE tired & 2. They risk my shoulders coming back out.

I have at least one dislocation a day, and my right knee is usually the culprit.