So I know Dystonia is thought of by the medical society as incurable but I have to disagree. Personally I think that the medical society know so little about Dystonia, that to say it is incurable is madness. Just because they have not found a magic treatment plan or pill that works for everyone does not mean it cannot be cured. Why accept such such a depressing prognosis? Why not stand up and say NO! I am going to beat this thing and prove you all wrong!!
Life has thrown a hell of a lot at me and so far I have beaten every single thing. I plan on beating Dystonia too. In 2009, I suffered from Complex Regional Pain Syndrome and I was hospitalised for six long months, yet I didn’t let it win! It took about 9 months but I beat it! I had to teach myself to walk again, I had to retain my brain to understand that things touching my leg weren’t actually harming me. It was agonising but I beat it!
If I can beat CRPS then I can beat Dystonia. The doctors all admit that CRPS and Dystonia are very similar, and treatment for them both is again very similar. So in my eyes if I can beat one, then I can beat both! Before all of this happened in July, I was so happy, I was training to be a midwife and loving it! I refuse to let Dystonia stop me!
So little Dystonia alien, if you can hear me, I would be very afraid! You have had your fun and now it is time for you to leave! I have had enough of you controlling my body! I am going to take back my body and I am going to go back to my studies!
Tonight the dystonia alien decided to show me what else it could do with my hand. Normally when my spasms last for a long period of time we end up trying to force them to release. However this particular spasm seemed to be determined to stay for as long as it wanted. Every-time we thought we had managed to release it, it decided to return. In the end we gave up, and decided to let the dystonia alien have its fun. The theory was that if we let it run its course, then perhaps the time in-between the spasm finishing and then returning would be longer. As I am writing this, it is still in spasm. If the muscles and tendons in my hand had the ability to scream, right now they would be.
The image shows the Dystonia aliens latest spasm game…
In the post today I had a follow up letter from my neurologist. He is still hoping to get me admitted into my local hospital for treatment, however if the hospital does not want to take me on, he will put on the waiting list to be admitted into the National hospital for Neurology. The waiting list for the National is a year long.
I am in two minds over this. It would be easier for me to be in my local hospital, as it would mean quicker treatment, my family and friends would be able to visit easier, and its an environment that I know well. However if I was admitted into the National I would be on a ward that has treated many people like me, which gives me confidence in their treatment plan, and there is a chance that even if I have treatment at my local hospital, I will end up at the National hospital anyway, so maybe going there first would make sense.
I know that at the end of the day treatment is treatment, and I am so lucky to have seen such an understanding and helpful consultant. However waiting a whole year for treatment scares me, so with that in mind going into my local hospital is very appealing. After all how much more could go wrong in that time? But then again, nothing else may go wrong! On the other hand even if I have treatment at my local hospital, I may still have to wait to be admitted into the National. I know that at the end of the day that I will be happy just to get treatment, but the unknown over which waiting list is shorter is slightly scary.
This last week, has for me, been full of thoughts to chew on. This week, there has been many programmes on for Stand up to Cancer, all of them heart wrenching yet inspirational.These people have to live with a disease that may or may not kill them, their life is a huge unknown. Yet despite having this devastating illness, having to go through emotionally and physically painful treatment, and so much more, they hold their heads high and they try to live their lives to the fullest. They are truly inspirational.
This weekend particularly, I have thought about them. How much they have to cope with, the pain they must deal with. Over this weekend both my facial and foot spasms have played up. They have been both painful and debilitating. Yet I know that none of the games the dystonia alien plays will cause me any long-lasting harm. They are simply irritating and painful. A nuisance, that I must and will learn to put up with.
I have to count my lucky stars and be thankful. I may have a disease that is currently incurable, that causes pain, embarrassment and is debilitating, but with the right treatment my symptoms could be dramatically improved. My illness will not kill me. It has changed the path I was on but it will make me stronger for it. I have to be thankful for the disease I have. My life could be so much worse.
Back in 2009 I was admitted into my local hospital with Complex Regional Pain Syndrome in my right leg. I stayed in hospital for a total of six months and still suffered with the condition for a few months after that. The condition meant that despite the fact that I could see my leg so I knew it was there, I didn’t feel like I was connected to it. It would change temperature, colour and sensations. I could not bear even the touch of clothes, and was not able to move it. As a result I had intensive physiotherapy and Hydrotherapy, which thankfully worked a treat for me. I had to learn to move my toes/leg/walk again and retrain my brain to understand that the floor or clothes etc. were not actually harming me.
Due to what I went through with the Complex Regional Pain Syndrome, I can understand how/why my Neurologist has recommend an intensive physiotherapy and rehabilitation treatment plan. I completely get how it will hopefully (fingers crossed) help with my symptoms in my arm and leg. What I am curious about is how it will help with my facial spasms and eye spasms!
When I had intensive therapy before, I basically had to bombard my nerves constantly. I was given exercises to do every hour (in the day) if the physiotherapists were not with me. This meant standing and putting my foot on the floor or running brushes up and down my leg etc. They were all extremely painful but it was by forcing myself to do this constantly that my nerves resumed normal activities. I am expecting that my upcoming treatment will be similar, I am presuming that I shall be made to do movements/activities that will bring on a spasm repeatedly in an attempt to retrain my brain. To me this makes sense, however with my facial spasms they tend to be pretty random, though sometimes I feel this has something to do with eating. Again my eye spasms are random and vary between the length of time they last, with the shortest being seconds long and the longest being 15 hours.
I know that I cannot get any answers to my musings until I am there and taking part in the treatment programme, but I am so curious! The whole disorder intrigues me so much. The human body is such an incredible thing, and although we know so much about it, when it comes to the brain we know very little. New things are discovered all the time, and each new discovery allows for more research to be done. We learn more and more each day. I may not even get the answers during my treatment. One small thing could trigger another. I can’t wait to see what my treatment plans does for my dystonia! Its a big unknown but hopefully one with a positive outcome.
After spending the last couple of weeks in a wheelchair, I have decided that I am not meant to be in one…EVER! I simple do not trust anyone pushing me. Now I know that no-one was ‘meant’ to be in a wheelchair, but I am honestly a control freak. Every curb, bump, lamp-post, person, etc, that appears sends me into a panic! I find myself constantly saying “please steer further away from the curb” purely because I am terrified of falling out.
I know that whoever is pushing me, is trying their best not to throw me out, or run into anyone/anything, but I panic anyway. I normally end up gripping the sides or leaning away from the curb, despite knowing that these actions will not stop me falling etc. I think most of my panic is because I know that if I was pushing the wheelchair, I would be an awful driver, so in my mind, everyone is automatically a bad driver.
However, I must admit, that despite my irrational fears when in my wheelchair, I have had a few amusing moments in it. Take for example, my mother the other day, deciding to run (whilst pushing me) down an aisle in Tesco singing the James Bond theme tune. It was a moment that had us both in fits of giggles.
My fear of other people pushing me in my wheelchair, has just increased my excitement at my upcoming treatment, if there is anyway they can improve my symptoms so that I am able to walk (even if its only for short distances) would be so amazing! I can only hope and pray for the best!
My dystonia is often referred to as the alien by family and friends. For those of you who have seen Toy Story, you will be able to understand how amusing the following was. Over the last few evenings the alien, when it has decided to spasm, has looked more and more like a claw. We instantly made the link to the aliens in Toy Story. This is now the image I have in my head of my dystonia.
Yesterday I went up to London to have my first consultation with my new Neurologist. Despite having read a ton of positive patient reviews of him I was still very nervous. It turned out I had no reason to be nervous!! He was a truly lovely man! He listened to all my explanations, brought on spasms so he could see what they did to me, and was very understanding.
He has decided to get me admitted into hospital were I shall receive intensive physiotherapy and intensive rehabilitation. He believes that with the right treatment there is a good chance I could regain control of the majority of my body. He thinks its all to do with retraining my brain. I have no idea how long I shall be admitted for or when but I don’t care, their is a chance that I could return to being me! If this treatment plan doesn’t get the results my neurologist is hoping for then he plans to put me into a different hospital which he said had a fantastic intensive therapy programme but had a much longer waiting list.
It felt amazing to have a Neurologist who actually cared, who understood how much of an impact the dystonia was having on my life. I left the consultation knowing that no matter what happened from now on the neurologist would be there for me to contact and I know that he will try his best to help relieve me of my symptoms.
I am now more hopeful than ever! I know there is a chance that it may not work, but the belief he had in the treatment programme was very reassuring. I cannot wait for it all to begin! I am rather curious as to how it all works and have a million and one questions to ask now! I cannot wait to throw myself into it!
I have never been a flexible person. The only part of my body that is flexible is my arms and wrists. However last night the little dystonia alien decided to show me just what it could make my body do. For a few hours before my dinner, my leg had been playing up a bit, my foot was bent and was dragging behind me. However during dinner it seemed to calm down and I relaxed. When I tried to get up from the table and hop to the living room, with my mum helping me, the dystonia alien decided to wake up. Before I could brace myself, my leg went into a spasm, sliding itself backwards. My stepbrother fetched a chair for me to sit on, so that I didn’t fall down. Yet my leg kept going backwards. Within minutes I had no choice, I had to either try to slide myself off the chair and onto the floor or have the spasm cause me to fall onto the floor. By the time I was on the floor, I was literally doing the splits. Despite being in agony, I had to laugh, I am not flexible, yet here I was on the floor in spasm doing the splits.
Eventually the spasm eased off and with the help of my Grandmother and my Mum, I got up off the dining room floor, and tried to hobble through to the living room. However the dystonia alien had not finished playing games. My right leg and foot shot behind my left leg. To those around me, it must have looked like I was curtsying. Yet again I ended up on the dining room, the spasm had pulled my leg as far as it could go. Again I ended up laughing. I am not sure whether I laughed because of the situation or if I laughed in exasperation, perhaps it was a bit of both. It took a fair length of time for the spasm to ease off.
I still cannot get over how far my dystonia pulled my leg and foot last night! The spasms in my leg and foot have always been pretty extreme and odd to look at, but last night was ridiculous. I now wish I had gotten someone to take a picture/video the spasm so I could show the specialist, I shall remember to ask someone to do so next time. Despite last nights spasms being so extreme, I feel rather positive today! I surprised myself at how well I coped with the pain of the spasms last night, especially with them being so extreme. I feel that with each spasm the dystonia alien throws at me, I gain more confidence, as I know that I can deal with my spasms fairly well.
As each day goes by, I realise more and more just how much I used to take for granted. I never once thought twice about the fact that I could cook my own meals, come and go freely from my house, dress with ease, or climb stairs. They were just regular daily things that I did. I know now, how luck I was to be able to do all of those things.
At uni, I could wake up half an hour before a lecture and have had breakfast, gotten dressed, and been out the front door in 20 minutes. Now I wake up and have to decide whether I need to yell for someone to help me through to the kitchen for breakfast or if I think I can hop to it myself. I cannot cook or carry things due to the fact I am highly likely to end up having a spasm or go blind. Some days even just putting my trousers on can take a good twenty to thirty minutes. All in all, just getting ready for the day can take me a good hour and a half, and on bad days over two hours.
Getting me in and out of the house is yet another issue. First I have to hop down to get out the front door and then hop up three rather big steps. This would not be so bad if I had the ability to balance or had some coordination.Unfortunately I have neither, so trying to get me out or into the house normally involves me trying my best not to hop/fall into the bushes but I usually fail. In the past even with the use of both legs, I have managed to fall down these steps numerous times.
Despite having to battle with my dystonia daily, just so that I am dressed for the day or so that I can go out, I remain positive. I am convinced that with all the hoping I am having to do, I will eventually learn to balance and have some sense of coordination. Even if I don’t manage to learn these two skills at least I shall provide entertainment for those around me.
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