When ill with any condition it can become very easy to allow yourself to be wrapped up in the negativity of it all. Recently I slipped, I fell off the positivity bandwagon if you will. I don’t think this slip is necessarily a bad thing. After all it is only natural that in life we have our highs and lows. Ironically it was Dystonia that reminded me to try and see the positive that does exist within and around the condition again.
My left arm and shoulder spasms/twitches rather violently, flinging itself out to the side. I always hope silently whenever this happens that nobody is within hitting range. I have had one to many awkward apology conversations following such a spasm. It was following a rather forceful one in a hospital Costa last week that I found myself out of my chair and on the floor, slightly stunned, sore and in a complete fit of giggles. A small part of me knew that one flailing arm had tried to grab the table, in a useless uncoordinated attempt to stabilise myself.
This incident was exactly what I needed to break the haze of negativity that I had cocooned myself up in since my Complex Regional Pain Syndrome diagnosis. I had forgotten to tackle this condition with the same approach I had the others. I was frankly too scared, I know how bad the pain can get and even though I am not at the same pain score I was in 09, mentally I jumped ship. Embarrassing myself by ending up on a busy Costa shop floor was the exact laughter filled wake-up call I needed. As much I crave a life without chronic illness, my Dystonia never fails to provide laughter, I’ll give it that much.
I hadn’t planned on writing this. Originally I was going to keep it pent-up. But the whole point of Dystonia and Me is to share with you all the highs and lows of this condition and the many battles I fight along the way. As I mentioned in a post during awareness week, I was abused physically and emotionally as a teenager. I have since had a lot of therapy to help me come to term with this and move on from that period of my life, which I have done. I have always strongly believed that you should be completely honest with your doctor. After all how else are they meant to successfully treat you if they do not have all the information they need?
The way many doctors have treated me after learning I have a history of abuse has left me wishing I had never informed them of it. This specifically applies to my GP. It seems that every aspect of my sanity has been called into question. I have never been so insulted. Yet it would seem that I am expected to roll over and accept this as the norm?!
My GP called me into a meeting to explain himself last week. At the time I was slightly pacified. Yet as I sit here, redrafting blog posts for college (exam prep), I find myself becoming incensed. This same routine has gone on for years now. Is it really so hard to believe that an abuse victim can move on with their life and be coping well, despite having a movement disorder? I am absolutely fed up of having to reassure him over and over that I am not depressed, that my past is not the route of all my problems. Even informing him that the genetic test showed that the Dystonia was genetic did not seem to make a dent in his warped view. As I keep pointing out to him, I am not the one dragging up my past it is him.
It worries me how little so many doctors know about Dystonia. My GP has looked after me since 2012, and yet still clings to the idea of abuse being the root of all my problems. This is despite having letters from my neurologist and my cognitive behavioral therapist telling him that my past has nothing to do with my Dystonia. I know that I am not the only sufferer experiencing this problem. Having to fight against doctors is hard. Standing up to them is frightening, I respect my GP, but at the same time he angers me so much because he is not taking the time to listen to myself or my neurologist. By standing up though there is a chance he may learn. I keep hoping…you never know. He may change.
So Dystonia Awareness Week 2015 has officially drawn to close for another year. It’s been great seeing pictures of people dressing in green and wearing green wigs to promote awareness on social media. I must admit I’m still struggling to get parts of the green dye out of my hair, I may have vague tints of green streaks for a few more weeks but that’s not for lack of trying.
Whilst Dystonia Awareness Week may officially have drawn to a close, our annual fundraiser for The Dystonia Society has yet to take place. We shall be throwing this in June, and shall be announcing the upcoming date this week. So keep your eyes and ears peeled! We hope to see as many of you as possible for tea, cake and some awareness!
I am thrilled to report that over the awareness week almost 1500 people viewed my blog. Of which 937 were new visitors. This completely hit last years numbers out the window. Hopefully everyone learned something new or helpful.
There are a number of different options sufferers are offered when diagnosed with Dystonia ranging from Deep Brain Stimulation to botox injections/ medication, and physiotherapy and psychotherapy. Unfortunately depending where you are in the world this can be a bit of an insurance or post code lottery. Each of these different treatment options has it’s own list of pros and cons, and they are not always the same for each suffer just because it helped another.
Deep Brain Stimulation can help significantly improve the symptoms of Dystonia, which in turn improves a persons quality of life. I know I would jump at the chance of having the surgery if I was eligible, but unfortunately like many others I am not classed as being ill enough for it. There is also no guarantee that it would improve symptoms, there is a chance of a negative complications during surgery or if an infection occurred post-op.
Injections, medication, physio and counseling also can help sufferers manage the symptoms and get about with their day to day life. However their is no guarantee how long the improvements will last. For example, over time its possible to develop antibodies and grow resistant to botox injections.
Treating Dystonia generally involves a combination of all of the above. One treatment alone often is not enough. however every individual is unique and there is always an exception to the rule.
Since I developed Dystonia in 2012 my past has been dragged up by varying Drs, repeatedly. I was physically and emotionally abused as a young teen for a period of a time, with the support and help of my loving mother and friends I managed to come out of this dark time as a positive, strong person. I had many years of counselling to help me put me put to bed that year of my life.
Unfortunately my GP loves to relive the past and enjoys rehashing old news. He has currently managed to convince himself that my ‘tragic past’ is the cause of my medical conditions, and that they are psychosomatic symptoms. In any other circumstance I would be upset at his words. However I have a lovely letter from my neurologist stating that my history of abuse has nothing to with my current organic symptoms!
I’m not sure why my GP has decided to ignore this letter, perhaps it is just because it makes life easier for him, after all I am a complicated mix of medical conditions but that’s no excuse for his current degrading tone and behavior. I can’t help but be concerned and wonder how many other Dystonia suffers are subjected to this behavior?!
I can only hope that as awareness for the condition spreads the attitude around it changes too.
When I was diagnosed with Dystonia in 2012 it took a few days for reality to really sink in. But after allowing myself to accept the diagnosis I launched myself into researching the condition. Something I’m sure many of you sufferers do. The problem with the internet is that you can find just about anything you want to find on it. Researching useful information can be problematic.
I was lucky and stumbled across The Dystonia Society’s Webpage quiet quickly (http://www.dystonia.org.uk/). Their website is packed full of easy to understand information and resources. It helped me come to terms with my condition and understand fully the condition I was dealing with. Previously I had not understood that it was my brain sending incorrect signals to my muscles causing them to go into painful spasms. I had simply thought they were just spasming.
The Dystonia Society over the last couple of years have been a wealth of knowledge and their helpline has been of great comfort. Another fantastic site is The Dystonia Medical Research Foundation (https://www.dystonia-foundation.org/). This is the American equivalent of the The Dystonia Society and is another resourceful website, providing fantastic information on the condition and advice. Websites such as these two are a great resource for suffers to use as a tool to educate Doctors, health professionals and family members who don’t understand the condition. They even have a have section for schools. I find myself checking these sites constantly for new material I can use to help advise others and am never let down.
When you become ill with Dystonia there are a lot of changes you have to make to your life. Mentally you often feel like you can still go out for that morning run, or dance the night away with your mates. The reality is extremely different. No two days are the same and spasms can cause simple daily tasks such as getting dressed to take hours upon hours.
Whenever I visit my Neurologist or my GP they both tell me to slow my life down and take things easy so as to give my body a bit of a break. They have been giving me this same piece of advice for over two years now. I know I should take their advice on board. After all they would not repeatedly tell me it if it was not necessary, however I find that I feel so determined/ stubborn to live as normal a life as possible that taking it easy just doesn’t seem to feel right.
I know that realistically my body would most likely thank me if I started taking it easy more often. Pushing the boundaries over and over only results in pain, I know that. However there is some small part of me that each time hopes that this will be the time I will achieve just that bit more. Instead my body goes in to hideous spasms that I have too spend a few days recovering from each time.
I think adjusting your life after diagnosis is one of the hardest parts of the illness. It’s not just your work life, but also your family and social life that are impacted. Having to explain to people that you yet again cannot do something because of Dystonia is incredibly disheartening, it helps if you are surrounded by people who understand and support you. At times it is not the spasms that prevents you from taking part but the fatigue from the treatment. I find the medication leaves me half asleep, which in turn impacts every aspect of life.
I have been living and adapting to the condition for around two and a half years now. I’m not sure if you can ever really adjust to it. I don’t plan on ever slowing down. I enjoy my life too much. I believe the best way to cope with this hideous condition is to take each minute as it comes.
When diagnosed with Dystonia there is a minefield of medication surrounding you. One wrong move and your limbs are distorting and spasming at a rate that threatens to hospitalise you. A medication that works rather well for one person may have dire side effects on another. Keeping a diary of what medications you have tried and your reactions can come in handy.
Botox injections is a widely used treatment for Dystonia, and in many offers a degree of relief from their symptoms. In the majority of sufferers the injections are administered every 3 months. Personally for me, I find that the injections only last around 5 to 6 weeks so my neurologist administers my injections every 6 weeks.
Medication can be very hit and miss, so finding a dosage that works for you is important. For example, Diazepam is a commonly used muscle relaxant to treat Dystonia. For me if you give a very small dose as a one off I will be fine, in fact I will sleep fantastically well. However if you give me a second dose that same day, or the next day I will have a psychotic break. The last time this happened I seriously thought that if I had my leg amputated I would be cured of Dystonia. It makes no sense, but at that time I was convinced.
One of the issues I have discovered since becoming ill is persuading Drs to play around with medication. Often this can unsettle them, especially when treating a condition such as Dystonia that many have not come across before. Due to this I have found many Drs unwilling to change medication or try different combinations, it has often resulted in me battling before they agree to try. It is sad that this is the case. I have said it many times before and I will say it again, the more awareness there is the better treatment we Dystonia sufferers will receive.
Living with chronic illness is never easy. It impacts the majority, if not all, areas of your life. One of these areas is relationships. Whether this is friendships, family, or romantic relationships, chronic illnesses such as Dystonia can have a big impact. It is hard enough for the sufferer to understand what they are dealing with and cope with it, but for people who are not experiencing it themselves it really sums up their characters by how they react.
Personally I think it takes a lot of guts for a sufferer to open to their friends and family and admit that they have been diagnosed with Dystonia. It is not the easiest condition to explain. There is no rash or broken bone that they can see, no medicine that is going to cure you. You are sitting them down and admitting that you are not going to get better, that you may in fact get worse, but that you are hoping that a handful of medication and injections will help control the condition. People will either stand by you or they will turn their back on you.
I can remember when I first announced to those closest to me that I had finally been diagnosed. I was naïve enough to trust that my support system would stay intact. I never expected it to crumble around me. My relationship of two years broke down instantly, and many friends vanished into thin air. At the time I was lost, unable to comprehend how those I had thought would stand with me through thick and thin could just disappear the minute the going got tough. With time though I grow thankful that they did leave, it meant that I was left with a support system I could count on whenever I needed it.
When you live with Dystonia I think having a support system in place is one of the most vital things in enabling you to get by. Emotionally it means I know that I have friends I can count on to listen whenever I am having a bad day and am not sure how to cope anymore. Physically, I can be reassured that whenever I am functionally paralysed for example I know there are people I can rely on to help me. I know of some sufferers whose own family turned their back on them because they simply do not comprehend the condition well enough, I am blessed to have family and friends who are here for me 24/7.
Dystonia can be alienating, in life you do not often meet people with the condition. Surrounding yourself with people who love you despite having a brain that likes to be dysfunctional is important.
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