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

Posts tagged ‘life’

Celebrating The Fabulous in Spoonie Life

I cannot believe how quickly this year has flown by, it feels like just the other month I was curled up writing my usual Happy Christmas blog post. Looking back at my blog posts from the last year it has been a rather hectic emotional roller-coaster. My blog was set up to raise awareness in 2012, but rather accidentally for me it developed into a rather useful therapeutic outlet. For you guys that means whilst I do post the happy stuff, the negative is slightly more frequent. This is simply because life is unpredictable and the good, bad and the ugly don’t come in equal measures.

So to help end the year on a positive spin here are just a handful of things that have kept me smiling this year that wouldn’t have happened if I wasn’t chronically ill.

  1. January 2016 – After BBC 3 Counties found my Cosmo Articles and my blog I took part in a quick phone interview to discuss disabled dating and ‘The Undateables’. Having been approached by ‘The Undateables’ before I took advantage of this opportunity to express how labels such as the shows title really are not helpful when tackling social stigmas.12583607_824636114328836_1166901021_n
  2. February 2016 – I was invited down to the BBC 3 Counties studio to participate in a valentine’s day segment on dating and disability. I was extremely nervous but the humour I manage to find in my conditions meant that I had several great stories to tell. It was a surreal experience that received great feedback and really boosted my confidence.12695785_835851056540675_1209977806_n
  3. March 2016 – Finally I realised the importance of not apologising for being the way I am. My genetic makeup makes me who I am. So what if I am a bit of an oddball with misbehaving limbs? If you feel uncomfortable around me then take a look at yourself and your views first, because my genetic make-up isn’t something that can be fixed and I no longer feel like I have to apologise for it.
  4. April 2016 – After waiting just over a year I finally was admitted to The Royal National Orthopaedic Hospital Stanmore for a 3 week inpatient pain management program. I’d been extremely nervous about this, and if I’m being honest didn’t see how they could help me short of waving a magic wand. 8 months later and I’m still putting my pacing lessons into practice (I slip up now and then but on the hole I manage much better), and I have a flare up plan that works!
  5. May 2016 – this had been a hard month, between being assaulted and the Drs telling me they were pretty certain I had MS (turns out I don’t but that was a scary few weeks). I was pretty much at my lowest point here. Then at the end of May I was offered a preliminary contract with Britain’s Next Bestseller. Now sure I may not have reached publication due to not hitting the pre-order requirements but hell that was a confidence boost and a half. I had a publisher believing in my work and that’s good enough for me.thumbnail_Regan Final Cover (2)
  6. June 2016 – I was still being investigated for MS, but with a wonderful man by my side I was managing to take it all in my stride. I was starting to see the funny moments in being ill again rather than allowing myself to be swamped in fear.
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  8. July 2016 – This marked 4 years since I had had to leave my midwifery training. Usually  I would mope about and be quite tearful. This year whilst the sadness is still there I can smile when reflecting on it. For if I had never become ill all the wonderful opportunities I’ve had over the last 4 years would never have happened.
  9. August 2016 – my partner gave me a key. I think I just grinned for the rest of this month.
  10. September 2016 – I started my 2nd year at university. I’d survived my first year and am fortunate to be studying at a university that goes above and beyond to help meet my needs!
  11. October 2016 – I was pretty ill and hibernated for most of this month. The fact that I recognised this and took care of myself was a huge leap forwards for me.deacf0c45b71fe38bc45675bced94b07
  12. November 2016- I ended up back in the hospital for awhile. Nothing out of the ordinary in that respect other than the fact I have a huge fear of this particular hospitals neurology team. After being misdiagnosed by them before it was no surprise when I found them to be as pigheaded and ignorant as previous. The difference this time around was that I had the confidence in myself, and enough knowledge of my conditions to advocate for myself rather than allowing them to treat me incorrectly.15128841_1048302218628890_7420253256398203646_o

Everything that’s happened throughout the year whether big or small has been impacted by my health. Previously I would have told you that was awful, I wish I could be ‘normal’; whilst yes I’d love to be healthy, I cannot deny I have an exciting fun filled life that if I wasn’t a spoonie would have been drastically different.

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Happy 4th Birthday Blog

Can you believe that today is the fourth birthday of Dystonia and Me? It is astounding just how much difference another year makes. My battle with Dystonia and my other conditions is one that for a long time I have felt I was drowning in. It has seemed like a constant tug of war, desperately trying to stay on top of my symptoms. For many years it seemed to me as if my little alien was always ten points ahead of me, and I was treading water trying to regain my lost control and catch up. Today I can quiet firmly say I am miles ahead of my alien, I am now basking in the peace of coping.

I’m not saying that I don’t have my down days, there are plenty of days when my spasms, seizures and dislocations just seem too much. However, what I am achieving makes those days worth while. In the last year I’ve completed my first year of uni, managed to live a life so full that it’s been beyond my wildest expectations for myself, I have been nominated for an award, interviewed several times by the BBC Three Counties, and I have had a blog post censored (which is why if you’ve been looking for the last one you have been unable to find it). I’ll let you guess as to which one of those I am most proud of.

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When I started blogging it was to raise awareness of Dystonia, in a short period of time it has grown to encompass a whole host of conditions that I live with. In 2012 when I created Dystonia and Me, I had hoped a handful of people may read this site and learn something new that could have the potential to help others. I never expected this blog to become the lifeline that it is for myself. Blogging my experiences, good and bad, has enabled me to accept my complications and learn to love myself again. Through this blog I have come into contact with incredible people who I admire greatly.

If you had told me a year ago I would be writing this, I would have laughed. I was so caught up in my worries and excitement about starting uni that I never thought to think what could possibly lie ahead. Who knows what will happen in the next year!

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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!

“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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Defeat Is Fine…

This evenings blog is going to be a short one as my body is being slightly temperamental. With this in mind, I want to focus on knowing when to hold your hands up and admit defeat. Many of us are guilty of powering on through the hard times. Fixating on a task is often a very handy coping mechanism, and can be a great tool. However sometimes you can spread yourself thin and wear yourself out, causing more issues.

This last week has not been one of my best, so naturally I have kept myself busy. I have read essays for friends, thrown myself into my writing, found any and every excuse to distract myself. It has taken many conversations before I have stopped and asked for help. Now I lie here in bed, sore, spasming and stressed.

We all have moments like this when we let life get the better of us and control us. The only thing we can do is stop, breath, dust ourselves off and carry on.

Dystonia: Who am I now?

There are many aspects to life with Dystonia; to address them all would take hours. So I’m going to focus on just a few this evening. As with any condition, once you are diagnosed, many sufferers go through a soul searching period. This is simply trying to work out who you are now. Inevitably we all change, for better or worse, once a chronic condition develops. You’re still the same person, just with a few modifications.

At eighteen I was a Student Midwife. There was not a lot else that made me who I was. I was a daughter, girlfriend, and student. I felt fulfilled. If you had told me then that in less than a year I would be unable to practice midwifery I would laughed. Midwifery was my passion, to even entertain the thought of another career seemed ludicrous. I could talk about the subject until I had grossed people out enough that they were begging me to stop! Now at 23 I am a daughter, student, freelance writer, blogger, reflexologist, advocate and Spoonie. Midwifery is but a happy memory that still brings a tear to my eye. I put up with less drama, I have no patience for anyone who only wants to be around during the more upbeat moments of my condition, and I am a hell of a lot stronger than I used to be.

It has taken four years to get to this stage. I have gone through denial: refusing to acknowledge that my illness won’t just disappear. I was so lost in this that I even reapplied and was interviewed to go back to study Midwifery. A small moment of madness in reality. I have grieved for the person I was, and that life that I lost. I have floundered in uncertainty, whilst those around me helped keep me from sinking into waves of despair. Now I finally have accepted who I have become. Despite everything I have been through, and am still going through, I am happy and thriving.

There are still days when I question why I have experienced the things I have. Only last night I was joking that I must have been a dementor in a previous life, for why else would I be sentenced to this path? Melodramatic I know, but it doesn’t make that feeling any less. Despite my illness I have no regrets. I am surrounded by people who love and support me every time I fall. Through my Dystonia I have had the opportunity to meet and talk with a number of individuals who I admire greatly. I have made many new friends. I have contacts around the globe! At the end of the day, I am happy. I cannot ask for anything else.

Chip; Dating Disaster 4

After a productive three weeks in the hospital I’m finally back and settled in to university life again. What a better way to celebrate than providing you with the next installment of dating disasters? So hold on to your screens, grab some popcorn and settle in for a dose of embarrassment and reality.

I’d been seeing a guy, let’s call him John Smith, for a couple of weeks. He was entertaining, the attraction was mutual and things between us were progressing well. We had reached that thrilling stage of where do we go from here? It’s always an entertaining dance of social blunders. It’s an attractive situation to be in, and we were both thriving off the tension building. We had talked briefly about my jackpot of disorders and at the time I think he truly believed that he could cope with it all. I was more than happy to believe this. You would think I would know better by now. It would have been different if he had seen just what contortionist tricks my body is capable of from the word go, but when we met my injections were in full swing and so he had never borne witness to my reality.

One night, not that long ago, we were curled up watching a comedy. I always laugh hard at the sound of my own laughter, I’m a bit of a nutter like that. Seeing me in stitches conjured up warm and fuzzy feelings for Mr. Smith, and he leant over to kiss me. It started off great, slow, full of nerves from both of us. Have you ever yawned whilst kissing someone? Not the most attractive move, so to try and hide this, I pulled back. No one wants their face yawned on after all. John read this as me giving into my nervousness, so a little bit too enthusiastically placed his hands on either side of my face to pull me back towards him. If he had had his eyes open, he would have seen the horror in mine. As he pulled on my yawning cheeks I felt the spasm roar to life in my jaw, and the oh so familiar pain as my jaw dislocated.

Everybody deals with witnessing a person dislocate differently. Some people feel sick, others just want to get you seen by a Doctor. I can understand all of these reactions, I’m certain if it was the other way around I would be exactly the same. What I didn’t expect was the wide tumbling range of emotions that erupted from him. For the most part he was repulsed, partially due to the dislocation and partly because he had caused it. Then came the upset, anger and panic. I sat there rubbing in the volterol, knocking back muscle relaxants and pain killers, alternating between trying to calm him down and relocate my jaw.

It was one of the first times I have had someone blame me for being too breakable. At the time I was hurt, it wasn’t like I had not forewarned him. Now I hold my hands up and laugh it off. I am the opposite of breakable, I’m much like Chip the teacup in Disney’s Beauty and the Beast; Slightly chipped but otherwise a barrel of laughter, and perfectly functioning. Looking at me on a bad day I can understand why a person may get the wrong impression, but sit calmly and talk to me and I’ll tell you just how resilient I am. Stick around and I’ll even show you. For now, I’m going to enjoy being ‘breakable’, laugh at my mistakes, highs and downright weird life path. I love my body, flaws and all.

Salute to Benedict The Alien

It’s Brain Awareness Week! Whilst I could whittle on to you about the many theories of how exactly the brain develops Dystonia, I figured I would just link you to The Dystonia Society instead as they have explained it in a far more efficient manner than I ever could. The Basal Ganglia theory aside, come Dystonia awareness week I’ll go into that some more. http://dystonia.org.uk/index.php/about-dystonia/dystonia-and-the-basal-ganglia.
Today I want to talk about my brain. Not brains in general, mine.

We are all unique individuals. A huge part of our individuality is our brains: they control our thoughts, motor process, emotions, impulses and so much more. They are the reason we have moments that leave us feeling like the next Shakespeare, and the reason we wake up some days look at our messages and question where on earth our sanity went the night before. After my diagnosis I loathed my brain with a passion that would make Hades quake in his fiery little boots. I was no longer ‘me’. I had new quirks that in all my nineteen years I had never met. I did not know how to love them, laugh at them, let alone tolerate them. Gritting my teeth and swearing out of my mum’s earshot was the best I could do for a rather a long time. It may not seem like the right attitude to have, but it’s what worked for me. I blamed my brain for why my life, which had been darn great up until that point, was crumbling around me. You could superglue me up as much you like, but there was no way the pieces were going to fit back in the same places.

These crumbled bits made a new jigsaw, and what do you know, four years on I have learnt to love my new quirks, love my brain and love every crazy aspect of my life again. My little alien has added another element to it, I’ll admit I still swear at it on a frequent basis, but I laugh far more than I did before. I am surrounded by positive people and I have barrels full of confidence that were worlds away when this little alien took hold and started to disrupt the signals bouncing around my brain. I’m always going to long to be ‘normal’, but I no longer view Dystonia as the alien that ruined my life. It’s now simply an uninvited house guest who is happy to provide entertainment for all.Invisible Illness, Chronic Pain, Chronic Illness, Lupus Awareness, Fibromyalgia, Endometriosis, POTS, Hypermobility, Quotes, Chronic Migraine, Chronically Awesome, Chronically Fabulous, Spoonies, Lupies, Lupus Warrior, Fibro Fighter, Epilepsy, Brain Aneurysm, Spoons:

Laughter; Breaking Down Barriers

What would life be without laughter? My life was full of it before chronic illnesses decided to move in, but over the last few years I can honestly say I have had many more laughs because of my disorder. Twitched and accidentally hit someone, tongue spasms, fallen over because I spasmed and lost my balance; all of these scenarios result in laughter, it has become my natural response. Yesterday an acquaintance was complementing my ability to cope, she mentioned how she didn’t know how I continued to deal with my mix of conditions day in and day out, and still be able to laugh. Now I acknowledge that not everyone would deal the same way as I do, but I cannot think of another way to cope.
Should I be angry, scared, terrified at the unknown implications of my disorders in the years to come? I’ll hold my hands up; I feel all of those emotions regularly. However, the sheer ridiculousness of the situations I have ended up in thanks to my dysfunctional body has ensured that these negative feelings are not consuming. Laughing, breaks down the emotional barriers that I put up whenever fear raises its grey head, and the barriers that others put up when they don’t know how to respond to what they have witnessed.
It is natural to see me spasm and hit something and for you to feel unsure how to react. We live in society where everyone is so easily offended, that people silently look the other way attempting to un-see the abnormal. If I am giggling at the hilarity of the situation, and let’s be frank it’s a painful but amusing moment, I would much rather you joined in. Laughter allows us to talk about what we are experiencing, it is a fantastic way to spread awareness. I’ve had friends who have mentioned they feel wrong for laughing. It would only be wrong if you were laughing at me, not if you are laughing with me. Don’t over-complicate a beautiful thing.

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