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Posted in Archive, May 2016

Dystonia: Who am I now?

Posted on by dystoniaandme

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.

Posted in Archive, May 2016

What Causes Dystonia?

Posted on by dystoniaandme

Currently the exact cause of Dystonia is not known; though a number of problem areas have been linked to the condition. Research has shown that there is a fault with a section of the brain called the basal ganglia. It is only in a small minority of sufferers that the condition has a clear cut cause.

Dystonia can appear on its own, secondary to another medical issue or as a result of medication – this is known as Tardive Dyskinesia. At the current time 80% of children diagnosed with Dystonia have it alongside a primary condition for example Cerebral Palsy. In adults the condition can be caused by a stroke and other neurological issues.

As research is progressing more genes are being found to be related to different forms of the condition. Studies have found that some cases of Generalised Dystonia are hereditary. However even if there is a genetic issue it does not guarantee that you will pass on the condition. It is thought that there is between a thirty to fifty percent chance of a child inheriting Dystonia depending on the mutated gene and type of Dystonia. So far over 20 genes have been identified in relation to Dystonia, with more being found all the time.

For more information on the genetic links to Dystonia I recommend http://www.dystonia.org.uk/index.php/about-dystonia/causes/is-dystonia-inherited

Posted in April 2016, Archive

Vulnerability and Dystonia

Posted on by dystoniaandme

Living with a chronic condition can have a detrimental effect on the sufferers attitudes or mental health. Many people experience disbelief from both the public and medical professionals during their fight to achieve an accurate diagnosis. Due to this many choose to refrain from openly talking about mental health conditions and passed traumas with doctors and those close to them. Often this becomes an early defensive behavior that is learned in on order to prevent pre-emptive judgement.

In 2012 during my fight for a diagnosis I found myself in the John Radcliffe for 8 days as I had developed Pain Triggered Non Epileptic Seizures, and my Dystonia had spread from my jaw to my eyes. I was very honest about my past with the consultants in charge of my care. I expressed that I had suffered physical abuse during my teenage years, that I had sought help and that I was now in a much happier place. I still view being honest with the doctor in charge of my care as a mistake however, due to the fact I had had this unfortunate experience I was informed all my symptoms were psychosomatic, and that I need neuro-psychiatric contact. As I’m sure you can imagine I did not take this well. I remember clearly stating that I would go talk to their psychiatrist, purely so I could jump through their hoops and prove them wrong.

Mere months later I had my diagnosis of Dystonia and a letter from my neurologist stating that my past experiences had no impact on my current state of health. That letter has not stopped doctors and acquaintances questioning me over the years though. On numerous occasions I have been asked if I am depressed. I am generally an optimistic person who loves nothing more than to laugh. Yet being repeatedly questioned has its impact. I am defensive of my health, I feel like I have to justify myself and that leaves me feeling vulnerable. For if people struggle to believe me when they can see the physical symptoms in front of them, what else will they close their mind too? Vulnerability is an emotion that too many sufferers of chronic illness experience. It comes in both physical and emotional forms. One of the best things a person can hear is ‘I believe you’. It is an empowering statement that allows us to relax and breath. Acceptance free of doubt opens up a line of honest communication. Something that we all need.

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Posted in April 2016, Archive

So What Is Dystonia?

Posted on by dystoniaandme

In the United Kingdom it is estimated that at least 70,000 people suffer from Dystonia. Despite being the 3rd most common neurological movement disorder many people have never heard of it. The word Dystonia describes uncontrollable muscle spasms which are caused by the brain firing incorrect signals to the muscles. There are many types of Dystonia however, and no two types present exactly the same. The incorrect signals can cause the body to take on abnormal postures, tremor, contort and more. Many GPs will not see the condition during their practising career which can make knowing when to refer for a diagnosis difficult. Many sufferers go years before diagnosis occurs.

The condition is incurable and a tricky one to treat. Whilst many people manage to live full lives with appropriate treatment, this fact does not lessen the impact of the condition. A task you may be capable of preforming one day you may be unable to perform the next. If the condition appears in adulthood, in the majority of cases, it will remain contained to this area – this is known as focal Dystonia. However typically if the condition appears during childhood it generally will spread across numerous parts of the body -Generalized Dystonia.

Obtaining a diagnosis and receiving treatment can make a huge difference to a person’s quality of life. Without treatment I would be unable to see consistently, I would struggle to communicate due to jaw spasms, my head would be lopsided and my arm would be uncontrollable. Due to lack of awareness reaching the necessary professionals diagnose can be difficult, which is why awareness week is so important; increased awareness will not only help improve diagnosis times but can lead to more funding to find a cure.

Are you doing anything for Awareness Week? If so get in touch and let me know.

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Green for Awareness Week
Posted in April 2016, Archive

Dystonia Awareness Week 2016

Posted on by dystoniaandme

Dystonia Awareness Week has arrived! This naturally got me reflecting on my journey with my alien so far. It has been a long four years to say the least, but the experiences I have had on my journey so far has been worth it. I don’t think I will ever be 100% adjusted to the lack of control I have over my body, but I’ve accepted, adapted and molded who I am around my quirks.

At 17 when I was diagnosed with Oromandibular Dystonia I didn’t understand what was wrong with me. I thought it was some sort of infection causing the issue and that once dealt with it would just be an unpleasant memory. When I was diagnosed with Generalised Dystonia at 19 it felt like the end of the world. Emotionally I was a mess. I couldn’t wrap my head around how I had gone from training as a midwife to being unable to brush my own hair, let alone stand up. Now at 23 I have hope.

If you spoke to me about the condition even two years ago I would have told you that I could not imagine living the rest of my life with it. The idea alone used to reduce me to a quivering sobbing heap. Despite the pain and the spasms, I can now picture the long term. I understand that my Dystonia isn’t going anywhere but I’m okay with that. It’s part of my life now and although it can be pretty dire, it has at the same time filled my life with so much laughter.

As is now my annual tradition I shall be blogging daily through-out Awareness week, and going green for Dystonia. So hop on over here daily for more information on the condition.

For more on Oromandibular and Generalised Dystonia head on over to http://www.dystonia.org.uk/index.php/about-dystonia/types-of-dystonia/mouth-or-tongue-dystonia

http://www.dystonia.org.uk/index.php/about-dystonia/types-of-dystonia/generalised-dystonia

Posted in April 2016, Archive

Hospital Post

Posted on by dystoniaandme

Receiving post is a very everyday aspect of life. Normally it’s not something that I would get over excited about. Every now and then though there is an exception. I received today three different types of support splints that the hospital had decided to order for me. The team I was under in the hospital witnessed several of my dislocations and noticed general issues in my hands and feet that could be improved with ease.

Three of the four splints arrived this afternoon. Two are designed for my wrists and thumbs. Part of the issue with EDS is that the brain does not always know exactly where the joints are. These splints help provide feedback to the brain along with stabilizing the joints.

The third splint is a gel ankle brace. If there was an Olympic medal for ankles giving away and falling over, I would take the gold every single time. My ability to fall down curbs, over thin air, and up the stairs is impeccable. The gel supports on both sides of this will cushion the joint whilst aiding stabilization. My skin breaks very easily due to the EDS so this design should work wonderfully with my skin.

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I am hoping that the splints as a way of treating the EDS, and my upcoming Botox injections, should mean I spend less time hugging the floor.

Posted in April 2016, Archive

Chip; Dating Disaster 4

Posted on by dystoniaandme

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.

Posted in Archive, March 2016

Salute to Benedict The Alien

Posted on by dystoniaandme

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:

Posted in Archive, March 2016, September

An Exciting Month!

Posted on by dystoniaandme

This month is full of opportunities that I never expected to experience. Towards the end of the month I’m going to Amsterdam for a few days with the university, followed by three weeks as an inpatient in the Royal National Orthopaedic Hospital Stanmore. It is an exciting time to say the least.

The publishing trip to Amsterdam shall not only be an insightful opportunity for my course, but shall also allow me to explore how my body will react to travelling. Visiting other countries was a luxury, that when I first became ill in 2012, I thought would have to be swept under the carpet and not thought about again. However, in comparison to four years ago my bundle of conditions are extremely well controlled, instilling me with the confidence to explore this opportunity further. To help ensure that I am as safe as can be my neurologist agreed to administer my Botox a week early to knock unwanted spasms on the head.

Back in 2013 this was me; reliant on a wheelchair with monthly ambulance trips to A&E.

Three years on I’m incredibly lucky to have a regime of medication and injections that enables me to live life to the full. I still need my wheelchair every now and then, but it is no longer a necessity for daily life.

12575854_826427370816377_1942932212_nLess than a week after I return from the trip it is off to RNOH I go for three weeks of intensive rehabilitation for my EDS Type Three. I have been on the waiting list for this stint for almost a year and a half, so I’m a bag of excitement and nerves in anticipation for my admission. My time there should enable me to carry on life with better habits when it comes to using my joints, hopefully that will mean less over extending, and help strengthen the weaker muscles and ligaments.

During my interview for the treatment we discussed what I would like to focus on strengthening, my first answer out of the several I was allowed to give, was my jaw. The combination of EDS and Dystonia means that my jaw comes out of place extremely easily, which inflicts a severe amount of pain. Knowing that jaw physiotherapy will be possible is huge news for me, as this issue is the main factor behind my seizures. Anything that will decrease the amount of subluxations and dislocations for my jaw has the potential to make an incredible difference to my life.

Needless to say I’m counting down the days to go!

Posted in Archive, February 2016, September

Don’t Worry I Won’t Tell Anyone You’re Ill – Disaster Date 2

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Everyone says things without thinking sometimes. Often its harmless, and its only afterwards when you are reviewing a conversation that you kick yourself in the teeth and hope it was not taken offensively. More often than not these things can be laughed off. This date happened the other week, and as I sat there attempting to get to know the man across from me, I found myself biting my lip more and more. Now I don’t mean this as a tongue in cheek Fifty Shades reference. It was a preventive measure to stop myself from reacting to several comments that were without thought.

For the first hour and a bit, I gave him numerous passes figuring that these careless remarks were down to nerves. I know from experience that I waffle nonsense when nervous so was prepared to ignore the niggling voice inside me telling me to leave. Eventually I decided to address one sentence that shocked me. ‘Looking at you no-one would know you’re ill, which is great. Don’t worry I would never tell anyone’. I’m sure many of you can imagine the numerous retorts that I had to bite back before answering. A large mouthful of G&T later I addressed this.

I started slowly pointing out that I don’t hide the fact I’m ill. I’ve never hidden this fact, I am not ashamed of the person I am, so I’m not going to start hiding parts of me now. This got me nowhere. So I attempted a different tactic, explaining that when my injections wear off my Dystonia is very much noticeable. Whilst in-between injection dates it is well-controlled, once the Botox loses it effect I have no control over the affected muscles. My explanation fell on deaf ears, all that he picked up on was that I had Botox on a regular basis, which left me defending this choice as he viewed it as a medicine for cosmetic purposes only.

It goes without saying that there will not be not a second date here. While it would have been nice not to have to justify my treatment, I view it as good practice for the next person who chooses not to listen to my explanations.