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

Posts tagged ‘blog’

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!

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.

When I Was bitten By A Dragon…

Yes that’s right Dr, at the tender age of six I was bitten by a mythological creature. Within six months of this terrifying beast having a chew on my thigh you diagnosed me with M.E. You had exhausted all other diagnostic criteria. Not once did you consider that something so dramatic as a dragon bite may have occurred. Had you have taken a thorough medical history maybe right from the start you would have suspected Lyme Disease, perhaps you would have treated me and cured me of this hideous illness straight away. But how silly of me. You are a Dr, you do not deal in the likes of maybes, possibilities and mythological creatures; only cold hard facts, ones that fit nicely into your tick boxes.

Over the last 17 years do you know how many times your kind have uttered the words “It would appear you have X, but I am unsure because you just don’t fit into any of these boxes exactly!” Since when did the boxes become so rigid and unadaptable, are we not all unique individuals with our own mix of conditions that affects us all in varying ways? If as people we are so unpredictable in the way a condition may manifest, why then are your boxes so unforgiving. Only Monday of this week the Dr sat there trying to decide whether to diagnose me with inflammation of the optic nerve in both eyes or inflamed retinas in both eyes. Frankly the lovely woman was lost, I had her quiet confounded. She could see plainly that I was rather ill, her barrage of tests confirmed that, but not one of them could put their finger on as to why. I sat there quietly next to my mother, both of us whispering “The dragon bit me 17 years ago, but you don’t believe in Chronic Lyme Disease.”

Now replace the word dragon with a tick. This small seemingly insignificant creature is known to carry, in many cases, Lyme Disease. A disease that more often than not will report a false negative during testing due to the lack of accurate testing methods available. Oh but a lumbar puncture would pick it up you say? Yes, it sometimes does, but my neurologist swears me away from it for fear of making my Dystonia worse. One hospital says we will give you IV antibiotics that you need to cure you but we will only do this if you have an L.P, another admits they are 100% certain I have chronic Lyme but their hands are tied due to regulations that are out of date and blinded with inaccuracies.

Chronic Lyme is often hailed as the Great Pretender. You only have to look at me to see why. Here I am in another flare up of symptoms, attempting to treat each one as it appears. Its distressing really, knowing that IV antibiotics would cure but regulations prevent this as I’ve had both positive and negative results. So in the meantime it’s a guessing game of what will subdue the next round of symptoms for now.

If only Drs believed in mythological beasts like Dragons and Lyme Disease.

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Swimming In Relief

The title says it all. I am filled with relief. I have spent the last week hardly sleeping, overthinking and consumed with dread at today’s hospital appointment. Good news for a change though. I do not have MS! The Dr was uncertain as to whether the issue with my sight is being caused by inflamed optic nerves or inflamed retinas, she’s leaning more towards the problem being with my retinas. Because my left eye, which is my ‘good eye’ also shows signs of being affected I have been prescribed a 3 week course of steroids to help speed up the recovery process.

Emotionally I feel drained, and a lot of sleep needs to be caught up on but I am thrilled to know what’s going on with my body and that it can be sorted! This evening is being spent recuperating with Harry Potter, and dairyfree chocolate. What more can a girl want?!

I learnt many things from Harry Potter…this was one of them.

Hospital Investigations

Since I last blogged things have been hectic. I have spent the majority of my days either at the hospital having various investigations carried out, or on the phone to them chasing down followup appointments. This week I have had more bloods taken and an MRI of my brain, eyes and spine with contrast performed. Tuesdays MRI experience seemed a bit surreal. It took 35 minutes, three medical personnel and 7 attempts before I was successfully cannulated as my veins were up to their usual disappearing act. This time allowed for me to internally become quiet anxious at the thought of being in the MRI machine for a minimum  of an hour – in the end it was about one hour twenty. I am generally not a claustrophobic person, but this machine brings that fear out in me, this is most likely exacerbated by the fact that I have to be strapped to the table to ensure my spasms cannot move me around to much and distort the images.

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Taken just after escaping the MRI machine

My stress levels have been through the roof this last week. I have fought so hard over the last four years to be put on a medication regime that allows me to have more control over my body again, and live a relatively normal life. The mere thought that my body may become more of an issue again is distressing. However I am lucky that I have a good support system in place, my family help keep me distracted, my boyfriend is great at talking through my concerns with me, and my councilor has been a fantastic space for me to vent and explore my frustrations at my faulty body.

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Relaxing in Costa after a long day of tests at the hospital

I get the results of my MRI on Monday. So I shall know then whether more investigations need to be carried out or if it is MS.

When The Drs Terminology Gets Terrifying

This week I have had three GP appointments, and visited three different hospitals. It’s been busy to say the least. For the majority of it I have managed to stay relatively calm and think in clear cut clinical terms. Today that went out the window. My GP this morning, unhappy at the treatment I was receiving at another hospital sent me with an urgent referral to my nearest emergency eye unit.  It has been an extremely long day of explaining symptoms, examinations and watching the same concerned expression on the nurses and Drs faces, when they realize that yes I really cannot see out of my eye.

Optic Neuritis for the second time in just under six months had the Drs in charge of my care today fairly concerned. Today they presented the fact to me that they had to consider that Multiple Sclerosis was the reason behind my Optic Neuritis. So tomorrow I’m heading back to the hospital for blood tests as there are a few other conditions than cause vision problems that they want to rule out, and at some point in the next two weeks I’ll be having a contrast MRI of my head and spine to give them more of an idea of what is going on.  Now I’m doing my best to remain optimistic, my way of thinking so far is that I already have a fair few neurological issues, so surely it’s another part of the bodies turn to be the problem. Not the most logical attitude I know, but it’s working for me.

In the meantime, Disney soundtracks are my distraction.

My Novel & The Dystonia Society

 

Preorder a copy of my debut novel here & help raise money for The Dystonia Society – https://www.britainsnextbestseller.com/beta//books/?id=55

Check out the trailer for my upcoming novel here https://www.youtube.com/watch?v=bDgQZ1zrS8Q

Finding Benedict

I was up in London today for an appointment with my fantastic neurologist. Whilst I always stress over the little things like timings, how the injections will go and medications, I never stress over seeing him. His manner is so calming that during the appointment I feel as if it doesn’t matter what he says, it’ll be okay as we will always put a plan of action in place to try and make the future as pain free and positive as possible! The hospital I attend has some fabulous Toy Story themed stickers on the wall in the waiting room which I love. As I’ve mentioned before I always picture my Dystonia to be a Toy Story style alien named Benedict. Which is why this picture naturally had to happen today🙂

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Finding Benedict!

I’m currently coping with Optic Neuritis on top of everything else. The hospital which I’m under for this had decided to leave it up to my neurologists as to whether or not I was treated with steroids. He has decided that he wants me started on steroids and wants an MRI with contrast carried out, as this is my second flare up in six months. I shall be spending Thursday at the eye hospital so hopefully I can talk to them about getting all of this put in to place and moving forwards.

Overall today went extremely well.

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