In the winter I quickly discovered that cold weather and Dystonia do not mix, my body spasmed constantly and I had to leave the house with several layers on and a hot water bottle or two! I never worried about how the heat may affect my Dystonia, and if our weather had stayed typically British then I am sure my spasms would have stayed to their ‘normal’ rate.
Now don’t get me wrong I love the fact we have had a lovely stretch of untypical heat, which in turn has led to BBQ’s, evenings in the garden etc, however I don’t love that it is sending my feet and legs barmy. I get through the day but by the evening I want to beg my feet to uncurl. In desperation I bought a desktop fan for my room to help me at night, which is so far working a treat. It has been a delight though to see the blue skies and watch birds on the bushes outside my bedroom window. Summer always brings a little uplift in mood for me which is fantastic.
My Botox is definitely kicking in now and I have barely any pain thanks to the spasms disappearing. I have some pain in my TMJ‘s (your jaw joints) but this is nothing in comparison to what I was in. It is amazing how much of an impact these injections can have and I feel very lucky that I respond well to them.
Thanks to the permission of some amazing people I have compiled a letter for the Health Secretary containing the different stories of people with Dystonia and their struggles for help. The Health Secretary told me he could not deal with just one case so I decided to compile these stories and open his eyes to the struggles we go through to receive treatment! Whilst I recognise some people have had fantastic service from the medical society, so many people have not and their voices need to be heard.
If you would like to help me open up the government and the NHS/private doctors eyes and try to get more help for us sufferers then please contact me with your story at either email@example.com or here https://www.facebook.com/dystoniajourney .
Yesterday afternoon I collapsed outside of my house and started having Non Epileptic seizures and Dystonic spasms. As I was not regaining consciousness I was rushed by ambulance (with blues and twos on) to my local hospital, where I was luckily treated by the lovely doctor who I had seen the last time I was there. The doctor remembered exactly who I was and even where the best place to take blood from me was! I was extremely impressed with how I was treated. I was unconscious for a couple of hours and have very little memory of the event.
Today I am rather sore, but I am also feeling inspired! My illness repeatedly puts me through hell and back, but its ok! I know that no matter what my little Dystonia alien throws at me, I will get through it. The image below depicts exactly how I am feeling.
Whilst Dystonia and Non Epileptic Attack Disorder are truly hideous conditions to have, I could be so much worse off. I could have cancer or another potentially life threatening disease! So I feel blessed that my condition merely limits me.
Through being ill I have had the privilege to talk to and meet some of the nicest people I have ever met. They all support me and give me strength! For example other bloggers and health activists; talking to them is a joy, as they can understand, advise and support me. Another great example are the amazing staff in the chemist by my doctors. I love going in there as I always get a warm welcome and have a quick chat, which puts me in a great mood.
I may suffer from a hideous condition, but I am so much more than just an ill person. I am a health activist, a fighter, I can be anything I want, and I can achieve anything I want. Just you wait and see!
At 20 years old I didn’t expect to feel like my world was crumbling around me. I thought that I would be out clubbing with my friends, or trying to stay awake during a night shift on placement. I expected to be having the time of my life. The reality is extremely different to the expectations I had.
Today I felt like life was trying to show me just how difficult it could make my life. I knew this weekend would be a hard one anyone due to personal things, however it has so far been hell. Yesterday afternoon until I went to bed, my hand did an extremely painful spasm, that resulted in me having hours of Non Epileptic Seizures, with only a few seconds of consciousness in between. Then today I have spent the majority of the day unconscious having seizures. Again these were caused by a bad hand spasm.
I feel like every bit of normality I had (e.g uni, relationship, walking, freedom) has been cruelly snatched away from me. I have to fight constantly with different government departments, with the NHS, and with my own brain. I won’t ever give up, but at the same time I am already very emotionally and physically tired.
Today due to spasms and seizures I have not been able to get out of my bed. I have felt so many emotions, such as anger and sadness, in some ways I feel as if today has defeated me. Now I know I will get up tomorrow and continue to fight, but I should not have to fight! Days like today I dread because of the way I feel physically and emotionally. I am lucky that bad days are few and far between. I have not felt this bad since January 1st. I will never stop fighting Dystonia, just like I will always campaign to raise awareness of it.
I keep thinking how silly it is of me to get so upset over everything that has happened to me. I could be so much worse off. I guess in a way I am grieving for the life I had, whilst carefully trying to create some degree of normality for myself. Life challenges us all in different ways. Whether we run screaming away from them at the top of our lungs or battle it with all we have, is up to the individual. For me I shall battle on, whilst knowing that on some days Benedict is going to have won and I am going to be unable to cope, but that is just at that moment in time. Who knows how I will feel the next day or the next month or even the next year! I need to learn when to accept defeat for that day and start preparing myself to battle on the next.
Yesterday I was visited by my GP, my Occupational Therapist and our Local member of parliament. I found the visits interesting in their different ways. The first to visit me was my Occupational Therapist, she is an amazing woman, who does above and beyond what is required of her. She has looked after people who suffer from Dystonia before, so she has a good idea of what the condition is like. Upon being in the house for 20 minutes, and watching me have bad jaw spasms and many Non Epileptic Seizures, she could not believe that I had not been admitted into a hospital as an emergency case!
Next came my GP. My GP is lovely, he does try his best to cope with my condition, but he has never dealt with Dystonia before so has very little understanding of how to treat/cope with it. My GP came to do a home visit as my head has not been right since I hit it on New Years Day and because due to my new Seizures there was no way we could safely get me out of our house. He did the usual basic observations, e.g my blood pressure, my pulse and my temperature. All where normal except my temperature which was ever so slightly up. My GP had never seen my Seizures before, and I don’t think he had a clue what to do with them. After checking me over, he decided that my body was most likely just fighting something off and that was what was causing the new seizures, and the collapse the other day. He did say he would inform my consultant as well.
Now this is the bit I find interesting. Compare the reactions of the Occupational Therapist who has seen Dystonia before, and the Doctor who has never seen Dystonia before. One thinks I need to be hospitalised as an emergency case and the other thinks my body just has a bug. I think these two very different reactions, are very interesting.
Finally our local member of parliament came to visit. This visit did not go as I had hoped, he listened, made noises in the right places and said he would right a letter. I’m not sure what I was expecting him to say but I had hoped for a more positive outcome than what did happen The most interesting thing he did was freak when our cat entered the room. It seems that I am going to have to do more complaining myself. I plan to start by writing to the heads of the hospitals whose system have failed, and take it from there.
Living with Dystonia is never going to be easy, and I can only hope that I will be one of the 1 in 20 of us who randomly, for no known medically reason, go into ‘remission’. I plan to draw as much attention as I can to this condition, until someone in the NHS or government realise that their system is failing us!