On Sunday afternoon my ‘good leg’ spasmed for the first time. I choose to simply ignore this, as I was having lots of spasms and seizures as it was. Other than having the odd spasms in a toe or two yesterday, my leg and foot were fine, and I choose to completely forget about it, as I felt there was no use in getting wound up over something that may or may not cause an issue.
However I woke up this morning to the bottom half of my leg and my foot in spasm. I breathed through the spasm and tried to think of calming thoughts. Once it relaxed I once again pushed it to the back of my mind and tried to go back to sleep. However any chance of having a peaceful day was destroyed when I woke up. My step-dad had been accidentally locked himself out, so I got up to let him in. What would normally be a couple of quick hops on the crutches to the front door, took a painful minute or two. My left leg was spasming badly and I struggled to balance myself and avoid setting off a spasms in right leg.
A similar situation arose later in the day when I got up to go to the other room. I really struggled to move at all. Which sparked a great deal of panic in me. I rung my GP and left a message asking for him to call me back, I knew that he would not be able to offer much advice, however the question he asked in response to my statement about my leg was “are you able to eat?”. I now have an appointment to see him tomorrow morning, I hold little hope for this though due to his earlier comment, after all since when have I used my leg to eat?
I am trying to stay calm and have mediated several times already today, however I have not been able to relax. Part of me is worrying about how I will be able to mount when I go riding on Thursday (I am going to go no matter what and plan on medicating myself to the max) and another part of me is having a break down over the impact that this is going to have.
I have tried standing in different positions over the day and if I stand on the side of my foot then this works to a point. It enables me to hobble around a little bit but I have no idea what else do. My whole body is now completely out of my control and I cannot stand it. I do my best to try to stay positive every day and fight against the spasms, but I am beginning to feel like I have fought one battle too many and they feel like they are never-ending.
However despite all my pessimistic thoughts I refuse to give in, I will keep trying to find new ways to get around the spasms. In the mean time I shall occupy myself with hounding the NHS for some form of treatment as I’m beginning to feel like I am drowning in a sea of untreated symptoms. I do not want to spend my days in bed, I want to be out and about!
Today marks the beginning of yet another battle against my Dystonia alien.
Over the last few days I have gone from thinking from one point of view to another. The reason for this is that on Friday and Sunday night I fell. Both falls set of many hours worth of seizures and spasms. Sunday nights fall was the worst. No one was in the room with me when I fell, and I have little memory of the day itself so we can only guess what happened. However one thing I am sure of is that is I really hit my head when I fell. What I hit my head on we don’t know it could have been the piano, the computer, the box or my bed. I am lucky that I didn’t do myself any real damage. However that fall in particular caused a lot pain, which consequently meant that I spent the majority of Monday unable to feel my right leg as my brain had disconnected from it, which was not an enjoyable experience. On both Friday and Sunday night, I experienced moments where although I was conscious I was unable to communicate properly. I found that I could not form words or get my mouth to move. Sometimes I was lucky and I could wiggle a finger to tell my mum I was conscious. This really freaked me out and got me thinking. The following picture describes best how I have felt on and off over the last few days.
I want to live my life! I am 20 years old and spend most of the day fighting with my body, just to get to the other room to see my family. I leave my house once a week if I am lucky. I am beginning to feel slightly insane. I want to go back to last March, spend my days on placement and my nights clubbing. I want to be able to hop on a bus and go to the pub to see my friends. I don’t like not having control over my life and my body. I feel like I spend my days shut up hiding from anything and everything that might cause a seizure or a spasm. Yet even being shut up does not prevent them. I still end up in agony, struggling to control my body.
However this second image depicts the second line of thought that I have followed over that last few days. I continue to mourn for a life I no longer have, one that I may never retrieve but at the same time I might. I need to stop mourning for the life I knew and embrace the life I am currently leading. However that does not mean the I give up hope for my old life. I shall always hope that I will be able to return to some sort of normality. For the time being I have to focus on the here and now, accept what is and carry on with my life whilst fighting for control.
I need to learn how to balance having some sort of normality whilst also making sure that I do not push my body over the edge. Like everything in life it is simply a learning curve, one that with time I shall eventually master. I need to remind myself often that I have only been suffering for about 8 months, I am still at the beginning of a very long road. I need to have patience and trust that everything I go through will give me the strength to keep on battling everyday, and eventually beat Dystonia. So for now I shall take deep long breaths, stay calm, and keep fighting on.
One day I shall beat my little Dystonia alien once and for all.
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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