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

Archive for the ‘July 2016’ Category

Would You Apologize For Shivering? Didn’t think so!

Every now and then I receive wonderful comments/emails/tweets from people expressing how reassuring it is to see me post pictures of my spasms. These messages often include phrasing such as “I don’t know how you do it, it’s very brave” and “I wish I had your confidence”. I don’t talk about this much, but when it comes to my spasms my normal confident self generally disappears. The stares in the streets, the whispers of “look at her face!” and people’s general ignorant remarks “Could you please stop or do it elsewhere” (usually in reference to my arm spasms) have caused me countless hours of upset. I don’t believe in wasting hours on being tearful over something I have no control over though, I hope the pictures below show that while hard, life as a spoonie can be fun.

               Does this splint blend in?  Laughter; the key to making the most of the spasm free moments!

In many ways I’m your stereotypical 23 year old, I take way to many selfies, own far too many shoes and grew up head over heels in love with books; a passion that has resulted in me wondering where to put them all now I’ve run out of shelves! I have all the insecurities that is normal of somebody my age: I am overweight, I do not care enough about fashion as I’d rather be comfy, and don’t even get me started on my complexion. It’s tiny insecurities that are perfectly normal but when combined with my spasms often results in self-deprecation. There are days when I can walk about not particularly worried about some of the smaller spasms I experience, and then there are days when I’m hyper aware and embarrassed when in public, not just because I need an aid such as my wheelchair or stick, but because my eyes are spasming causing functional blindness, and my jaw is contorting to the point of dislocation; this is all whilst my left arm is casually attacking anything in range.

When confronted by people asking me to refrain from spasms, I try to politely explain that it’s nothing I can control and apologize. But why should I. Should you apologize for shivering when cold? It’s a natural reaction that you would never dream of uttering apologies for. So why then should I issue out apologies for something that is just as natural. Sure, everybody and their friend may not experience it, but it’s my brain firing off incorrect signals that are just as natural as your shiver or yawn.

I live in pain every day and never know what to expect from my body. Yet people judge me for this. If all I manage to accomplish that day is a shower and pulling on a clean pair of pyjamas then who cares, all that matters is that I achieved it, other days I am capable of so much more. But just because I have had the energy and ability to carry out a task at that point in time, does not mean I will be capable of performing the same task five minutes later, let alone the next day.

I try to live every day ignoring the sideways glances and stage whispers, enjoying everything I am fortunate enough to experience. These days I try to capture my spasms on camera, as after all they are just as much a part of me as the functioning parts of my body. So when you are say I’m brave and ask how I cope the answer is quite simple. I’m not brave, I am stubborn, Dystonia and my host of other conditions will not stop me from living life. Coping is a different matter altogether. Some days it’s as easy as breathing, and laughing feels like the answer to everything. Other days curling up in my bed escaping into books where the words provide comfort and distraction is all I can do.

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Rocking my wheelchair!

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Novel Update

As you may be aware at the end of May I signed a preliminary contract with Britain’s Next Bestseller. Publication was completely reliant on fulfilling a contracted requirement of 250 preorders minimum. Sadly, the six-week campaign period has now drawn to a close and I did not reach target. This means that my novel shall not be being published through this publishing house.

However, it’s not all bad news. The ten-day period following the campaign drawing to a close has now passed which means I am free to approach other literary agents and publishers. I am viewing this current moment in time as simply a stumbling block, one that at some point in the future I don’t doubt I will conquer. I am focusing on exploring more traditional publishing routes, and look forward to what is to come.

Thank You to all who have supported me in the first part of this venture. I cannot express enough how much I appreciate this. Please do not worry, you will not have been charged for your preorder.

Four Years On

Five years ago I was ordering every midwifery textbook and journal listed on my degree reading list; excitedly absorbing every word each page had to offer. Through that next year I lived and breathed for the job. I am immensely proud and blessed to have had that opportunity and experience.

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That year, however was blighted by ill health. I had operation  after operation and frequent trips to the local A&E. Reflecting back on that time I can track the dramatic decline in my health before my Dystonia took root at the end of July 2012 and Benedict my Dystonia Alien became part of daily life.

For the first year I honestly did not cope. People would tell me how well I was doing and silently I would disagree. I was spending the majority of my time holed up in my room desperately searching for any other answer, any other curable illness that could explain my symptoms. I had no idea how to be me anymore. I had built my whole identity around midwifery, the reality that I was, and still am, to ill to practice had me in denial for many years.

Since 2013 I’ve rediscovered how to live and enjoy life no matter the severity of my symptoms. It does not matter if I am reliant on a wheelchair/stick/splint or if my body is spasming to the point of distortion and dislocation, there is always something positive to latch on to.

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Now that’s not to say down days don’t occur,  they do but on a far less frequent basis than previously. Generally these are only after baffling drs or a new diagnosis being added to the growing list.

Living life with a goal oriented focus has been a huge help for me. It doesn’t matter how big or small the aim in mind, the motivation it provides is key. This mindset has enabled me to qualify as a Reflexologist, complete an AS in creative writing, start a new degree that I adore and now focus on getting my novel to publication.

Aiming and achieving my goals enables me to feel as if I am defeating Benedict. I know he’s never going away but it makes living with him easier. When I first got diagnosed I could barely imagine the next week let alone year. The idea of living with my conditions for any length of time was to painful and deeply upsetting. Four years on I can look to the future with the knowledge that my body will never function as it should but excited as to what new milestones I can achieve next.

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“Who Is That Guy?”

After receiving several messages across various social media platforms regarding the pictures I’ve been posting, I figured it was time I addressed them. The quick answer to your questions is I found a really great guy.

Who is he?

Meet Damon, my ridiculously wonderful boyfriend. He’s rather fantastic, and sees my chronic illness as just part of me being ‘unique’. Whether I’m twitching and hitting him, panicking about new symptoms, or worrying about hitting my preorder requirements he’s supportive and helps to keep me grounded and calm. He has an ability to make me giggle no matter my pain levels, and understands that I would always much rather laugh at my conditions than make a big deal out of it.

Is he Coffee shop guy?

Nope he isn’t. However, our first date did start off in Costa Coffee. We sat across from each other and had a fab laugh before heading down to the local museum where I promptly spilt the remainder of my coffee down the front of my jeans. He had to spend the next few hours walking around with me looking like I had had an accident. Luckily Damon is equally as clumsy as myself, so laughing off incidents like this is a frequent occurrence.

How come you haven’t blogged about him?

Well I have mentioned him briefly in a blog a couple of weeks back. But I decided to hold off on blogging about him whilst our relationship developed. I’m blessed that not only does he understand that I don’t want my illness to hinder my life but that I also need to pace myself (which as you all know I am rather terrible at). He is really good at reminding me not to use my spoons up, and checking that I am physically up to whatever we have planned that day.

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