Sunday, 11 December 2016

Sunday Stories | Becca's EDS + Fibromyalgia Story

Sunday stories is a new series on my blog where every week a different person talks about their condition (physical, mental etc.), shares their story and raise awareness. For the past 5 years I've used my blog as a space where I could do just that but I wanted to extend things even further to allow others to talk and raise awareness of their conditions. I'm really excited to introduce everyone to you! Today the lovely Becca is sharing her journey dealing with EDS and Fibromyalgia, so I'll hand things over to her.


Can you tell us a bit about your conditions and how you were diagnosed?

My cousin was diagnosed with EDS (hypermobile type) in 2014 and it offered an explanation as to why my dad and I were suffering so many similar symptoms. So off to the doctor I went who referred me to a rheumatologist. The consultant listened to my history and my symptoms and was more than convinced that EDS was something that was running in my family and that I too had inherited the condition. My dad was also ultimately diagnosed at the same time as me, which helped to further confirm my own diagnosis. It basically means that the connective tissue that surrounds virtually every structure in my body, such as my ligaments, tendons and digestive system, isn't as stable as it should be and stops things from working as effectively as they should. 

Fibromyalgia is a very recent diagnosis for me. Even when my pain was more controlled than it had been, I was still constantly tired, dizzy and unable to think clearly or make coherent decisions. Even the slightest touch against my skin had me cringing away in discomfort. I was sick of constantly crying and staying in bed because of how poorly I felt so I took myself off to the doctor again and he concluded I was suffering from fibromyalgia brought on by the EDS that I'd been suffering from, both knowingly and unknowingly, almost my entire life.


How does your conditions affect you on a daily basis?

Debilitating pain. Not just my joints anymore either, which was more the case in my teens - early 20s. Anything can bring on the pain - cold weather, walking five minutes up the street, even a particularly harsh cough. It's impossible to avoid and some days I don't cope with it very well at all and become very depressed. You can't necessarily see how much pain I'm in all the time because I try to be as stoic as possible, especially in public, so I suffer from terrible anxiety at the thought of coming across as rude whenever I take up a disabled seat on public transport. The whole ordeal can be exhausting and I'll end up crying frustrated tears (sometimes when I'm still on the bus).

The almost daily subluxation (partial dislocation) of my hip joints is nothing short of horrific, as the pain can take my breath away and make me feel extremely nauseous. I physically cannot move my legs when it happens. It's highly embarrassing when you suddenly stop dead in front of someone and they give you a funny look, but I don't have the ability to explain what is happening because I fear if I open my mouth I'll puke. Thankfully this hasn't happened in both legs at the same time, and I hope it never does, because I don't wish to live in fear of toppling down with no one to catch me. 

Both EDS and fibromyalgia can also effect the digestive tract, and boy does it effect mine. I've had silent reflux for years no matter what I eat - my doctors were often stumped because I didn't show any of the classical signs nor did I seem to have any particular food/drink triggers. I frequently get a gnawing pain in my gut and IBS to boot. I think I must know every gastroenterologist by name in my area at this point.

I feel 86 rather than 26. I love walking around and taking photographs; I love gigs; but I just cannot walk and stand in one place indefinitely like my friends can. I have one friend who is three times my age and is more able bodied than me, and while I applaud her young spirit I can't help but feel a tinge of bitter jealousy. I'm human and I don't always handle my situation gracefully. In fact, in the past I've been downright moody and snappy; the terrible guilt I feel afterwards always makes me retreat more into my shell. Knowing who I am and what I want but having a body that does not always allow me to pursue my goals to the best of my ability is soul destroying.

Do you have any tips for someone who is newly diagnosed with your conditions?

Don't feel guilty for your illness(es). It is not your fault. I have spent so much time feeling guilty and like a burden and I'll never get that time back. I am getting better at catching myself in these thoughts and swatting them away before their tendrils really get a firm grip around my brain. 

What is one thing that you would like people to remember about your conditions?

Be Kind. Don't presume to know why that perfectly healthy-looking young woman is taking up that disabled seat. She could be fighting a war with her own body and mind and you wouldn't have a clue. 

You can find Becca on Twitter here.

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