Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Archive for the ‘June 2018’ Category

CRPS & Dystonia

I first heard the words Complex Regional Pain Syndrome and Fixed Dystonia back in 2009; I had just been admitted to hospital with unbearable pain, colour changes, temperature fluctuations and a hypersensitivity to touch in my right leg. I would spend the following six months confined to a hospital bed learning to retrain the damaged nerves. It was a hell I would not wish on anyone. I am one of the lucky few, whilst I never achieved full remission, the pain eventually reduced to a tolerable level which only flares up if I lie down on that side of my leg for too long or bash it. Unfortunately I was rediagnosed with CRPS in summer 2015, this time it had manifested in my left shoulder blade and arm. Once again it had been caused by repeated injections to the same site which resulted in damage to the nerves.

CRPS has been a condition I have fought for many years, generally I have a good handle over it. I know what to avoid and how to help myself as much as possible. Yet every now and then I have days and nights like the last 24 hours. It is hard to describe the agony in which I have spent it in. The night before last I simply bumped my thigh whilst getting out of bed. The pain at the time seemed excessive for such a little bump, but I presumed if I lay down and rested for a few minutes it would die down to its usual level of simple discomfort. Instead with each minute that went by the pain intensified as did the spasms.

I made the decision yesterday not to leave the house, I knew I would be fully reliant on my wheelchair and that even the lightest breeze would reduce me to tears. Instead I kept myself fully medicated on Tramadol which dulled the pain slightly but nowhere enough. I needed both my walking sticks to hobble the few steps to the toilet. Each accidental brush from the cat as it went past left me biting back screams and in yet another wave of tears.

The spasms and pain kept me up for the majority of the night. I managed just over three hours sleep in the end.  The spasms twisted my leg into positions that resulted in multiple subluxations, and my nerves flaring meant that I could not bare the touch of clothing, the mattress beneath me, or a duvet. It’s hard to explain to someone this type of pain, at the point of time I would have jumped at the opportunity to have the nerves severed. To be honest, even right now at this time of writing when the pain is slightly reduced but still horrific I would beg for it to be done. Let me put in perspective for you,  full blown labour is easier to deal with.

Image result for mcgill pain index

Whilst the pain is improved today I am still struggling. I feel as if someone has sliced my leg open multiple times from my thigh down to my soles and has rubbed vinegar into the wounds. The constant spasm in my thigh has left me exhausted and desperate for a relief that seems as if it will never appear.

I know that in a few days time in all likelihood I will be back down to my usual levels of pain and spasms, but there is a niggling fear at the back of my mind that it won’t reduce further. That fear is more terrifying to me than anything.

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What Next?

Three years ago I announced to you all that I was off to Oxford Brookes University to commence my studies in BA Publishing Media. It was an unexpected decision.  I had attended an open day as a prospective student with the mindset of applying for the 2016 intake; a chat with one of the lecturers about my writing and editing experience and I had a place for the 2015 intake. It was out of the blue, a whirlwind of excitement and fear, yet exactly what I needed.

The past three years have been full of highs and lows. I’ve had multiple conditions diagnosed and added to my ever growing list, I spent the better part of my second year studying from my hospital bed, my debut novel was published in the middle of my studies, and whilst in my third year my wonderful son accompanied me to the majority of my lectures. I had the support of the uni through every moment, they celebrated my successes and they raised me up in my lowest moments. I can’t quite wrap my head around the fact that it has now come to a close.

Yesterday, 19th June 2018, I graduated with a 2:1 with honours in BA Publishing Media. Receiving my degree was a moment that at many points over the last three years I doubted very much that I would ever reach. Yet I did it. I conquered every challenge thrown my way.

So what’s next for me? Well my first children’s book, Cheeky Dragons, is currently in the editing process after being signed to Nightingale, I’m working on the prequel and Sequel to Regan Snatcher of Souls, and finally several months ago I opened my own publishing house Little Goblin’s Books focusing on children’s picture books and young adult titles. My company, and my writing projects are keeping me busy and I’m thoroughly enjoying  them. The idea of pursuing my Masters’ degree in Publishing is one that very much appeals to me, but for now a little break from essays is very much welcome.

 

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