hEDS and Me

Gather around it’s time for a story. Nah, I’m kidding, I just thought that would be a different and fun way tp start a blog…lockdown is clearly getting to me. I’ve used this blog a lot to write about my life with chronic and mental illness over time. It’s been an important place for me to not only get my own feelings out there but also raise awareness of my conditions.

For those of you who have been here for a while you’ll know that when I was 20 I was in a horse riding accident, fracturing 4 parts of my spine, after a long recovery I didn’t get that much better and was diagnosed with Fibromyalgia. For the past few years I’ve dealt with that and learned to accept it, but something still didn’t make sense to me.

I’ve had issues with my joints since childhood, my first set of physio was at 10, then from 15 onwards I was on and off crutches for knees that seemed to keep trying to dislocate themselves (I didn’t know that at the time), I was constantly at A&E for a simple trip or fall which would leave me not able to walk from joints feeling far more painful than a bruise, unexplained stomach issues for a long as I could remember. Fibro, in theory, is triggered by some kind of trauma so why had I had joint trouble my whole life?

Nothing was a red flag to any of us, surely I was just a clumsy kid with a sensitive stomach? Last year though I realised, while in lockdown, when I wasn’t pushing myself I’d still get these issues. I’m a part of the Spoonie community and something came up that was like a lightbulb in my head – Hypermobile Ehlers-Danlos Sydrome (try saying that quickly). It made so much sense, but I also knew I’d have to get back in front of my Rheumatologist to get any help or advice. Luckily I have a good GP who knows my history and she was more than happy to refer me, I also had put some money away so I could pay to see him, instead of waiting for a year/a year and a half to see him.

I know I was in a position of privilege to do that, we’ve been living with family for a few months so I’ve been able to put a bit of money away. I went back to see my incredible Rheumatologist, because I knew he would listen to me. Once I find a doctor that actually listens and tries to understand I try to go back to them. I felt I could go to him and say ok, here’s what’s been going on, I’ve worked out this much can you help me please?

Since getting the diagnosis I feel so much better. I know that sounds strange, let me explain. Firstly, I always, in a way, blamed myself for the way my spine broke. I’d seen people fall and get up fine, it must have been something I did when I fell for this to happen right? I told a friend this and he laughed at how ridiculous this sounds and he was right! The fact that I now know that my body is more prone to sprains, fractures and breaks, that it’s probably part of the reason it happened. In fact, the ‘self-help’ sheet that I got says to ‘Try to prevent falls and burns; fractures, wounds, cuts and bruises may take longer to heal and may scar poorly’…well there goes my plans for the weekend.

In other ways too this makes so much sense. I didn’t have the greatest school experience, in fact it was pretty terrible. I was constantly ill with an upset stomach and we could never find a reason for it – it just happened. I was in and out of A&E a lot because I’d fallen over playing and sprained a ankle or wrist. Like I said before I was on and off of crutches for years and people definitely thought I was being dramatic or putting it on. It’s a lot of weight to carry.

It all makes sense now and having that knowledge has given me a sense of calm now I know that’s going on and that this is real. I still have Fibromyalgia too, one hasn’t disappeared because of the other even though symptoms do overlap this is my life now. I’ve also come to the conclusion that I refuse to apologise for my disability or change myself to make people feel more comfortable. This is who I am.

To document my life with my illnesses I’ve also started a new Instagram account, woo! It’s to share the ups, the downs, all of it and if you’re interested you can have a look here.

If you have any questions drop them below! I’d be more than happy to answer them!

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