Heyo!
Today I wanted to talk/write about something different, and it's something that I have had to deal with for nearly five years now. Elhers-Danlos Syndrome. I know, sounds scary right? The NHS definition states:
'Ehlers-Danlos syndrome (EDS) is the name for a group of rare inherited conditions that affect connective tissue. Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones.'
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| I made a mind-cloud of sorts based on all the words people use on forums and in support groups to describe their EDS (as well as some of my own words) to put into perspective what it's really like |
(I've been in essay mode so excuse the quoting, but it's really difficult to try and explain to anyone, let alone people who have never even heard of it before!) There are several different types of EDS, and these range from hypermobile, vascular, kyphoscolitotic, and the 'classical' type. These all sound pretty painful, and if I'm being honest, it is. It's actually really bloody horrible to live with.
There is no cure for this, and it's a really nasty thing to have.
EDS is very uncommon, with around 1 person in every 10,000 being affected by some form of EDS and its various symptoms. The symptoms are quite easy to miss, but when you have more than a few it becomes very alarming to the doctor who is diagnosing. For example, I went to a geneticist and was referred to loads of doctors until I was eventually diagnosed, and I had nine of the symptoms, ranging from an irregular heartbeat, an increased range in joint movement, extreme hyper-mobility in my hands and feet, fragile skin, and easily bruising from simple things such as blood tests and playing sports.
When I got diagnosed aged 15, I didn't really know what it meant, other than the way I was feeling when I stood up too quickly, or the fact I bruised worse than a peach was kinda normal for me. When I told people, they all said it made sense, but nobody really knew what it was. I would fracture bones easily when playing sports, something which was flagged up by a doctor, confirmed by a podiatrist later on with x-rays after much confusion.
This condition killed a lot of my hobbies. I was no longer able to play football because nearly every game I was getting more stress fractures and injuries. To quit three different sports all at once was really hard. I had been sporty since the day I could walk, and spent years working hard to be the best that I could be. So to have this explanation at last, and have the world as I knew it crumble around me was confusing and scary and weird.
After a couple of years, I got used to the fact that this, alongside being anaemic, was going to affect what I did in my everyday life. I had quit all my sporty hobbies, and finally managed to find new ones that wouldn't see me passing out or damaging myself. Without this diagnosis, I would have been in real trouble, and I would never have fallen in love with baking and all the things I now love. It stops me being able to write for long periods of time, and my college and university have worked with me so now I get extra time for all my exams and essays, and access to a computer if it all gets a bit too much.
I don't really tell many people about my EDS, mainly because I don't see it as a disadvantage anymore. I refuse to let it stop me doing what I want (within reason) and I have come to learn when to stop doing something that could damage my health further. I know my limits, and I try very hard not to over-exert myself. Most people will never see me at my worst because I won't let them. I don't want anyone to have to imagine me suffering so much I cannot physically get out of bed, or that I cannot get out of the bath because I am in too much pain.
I have had to compromise on a lot of things over the years, but with the help of doctors and nurses who have helped me when everything seems a bit shit, to my mum who has never stopped supporting me, and my friends who never fail to make me smile when all I want to do is curl up into a ball and cry. I've had lots of different 'coping tools' available to me, from CBT (cognitive behavioural therapy) to help me come to terms with it all, to occupational therapists and physiotherapists to help me learn my limits and what to do when I have no energy. These have all helped me come to where I am now: happy, healthy, and fighting this disease one day at a time.
I am not my illness anymore, I am Beckie, and I'm pretty great.
I am not my illness anymore, I am Beckie, and I'm pretty great.
If anyone has this nasty disease, or any of the things associated with it, and wants someone to talk to then I'm here, and there are loads of amazing places you can go to get further advice, support and help.
B x
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