Normally if you are in pain or need help for some reason, you are able to call out or make a noise/movement to indicate that you need someone to assist you. I cannot always do this and to be honest it terrifies me. It is one of my bodies latest tricks. I class it as one of my Non Epileptic Attacks, even though it does not look like a seizure.
It will start with a spasm somewhere in my body, as usual I will try to ignore it and try not to get wound up. Then, if it is a bad spasm/spasms comes the agony.
Picture this, you are lying on your bed reading, ignoring the searing pain that is consuming your right leg. Suddenly the book falls from in-between your fingers. You frown, there is no spasm in your hands, so why did it fall. You have not realised that your eyebrows never moved when you frowned. You go to reach down to pick up your book, but your arms don’t move. You try to wiggle your fingers, but again they do not move.
Your getting a bit concerned now. Taking a deep calming breath, you order yourself to stay relaxed, there’s no point getting worked up as you know it will do you no good. You decided to lie on your back with your eyes closed, so that you can day-dream peacefully until your body responds better. That’s when you realise that you no longer have control of any part your body. You are stuck on your side, your arms frozen in the position they were holding the book. You cannot move. Your eyes are stinging because they are no longer blinking. Your eyes can only take so much before they spasm upwards due to the pain.
Now you are blind, unable to move and in agony. You try to yell for help, but your lips do not move and no sound comes from your throat. You are locked in your body. Unmoving, making no sound. You can feel the panic levels rising, you try to control your breathing and keep calm, but its hard. The pain from the spasms in your leg and eyes are only getting worse. You want to scream but only silent tears run down your cheeks. You can hear people in the house, they think your fine. No one will know what’s happening unless they come to check on you.
The minutes are slipping past so slowly. You have only your mental voice for company. The panic is getting worse, as is the pain. By now you know that unless someone comes to help you soon, the unconsciousness of a Non Epileptic Seizure will soon engulf you, silencing the one part of you that is still free, your mental voice.
You can feel the unconsciousness creeping up on you as the pain gets worse, its like a slow fog creeping across your brain. You can feel that your state of awareness is slipping away bit by bit. It won’t be long now. You know that there is nothing anybody can do to help you. A small part of you is welcoming the creeping fog, in a sick way it will help.
Its getting hard to think now.
The fog finally consumes you.
That is a glimpse into the latest torture that I put up with. Sometimes the unconsciousness helps, and when I regain consciousness I’m ok, other times this goes on for hours and hours, and it is truly terrifying. It takes severe pain to cause it all, and part of me is now extremely frightened of feeling pain as I know what may come with it. All I can do is hope that each spasm will not be too bad, and if it is bad, try to relax.
The sun is shinning today, and I’m taking that as a good omen for a hopefully pain-free day.
I have had a rather busy and sociable week. It has been completely brilliant and was a slight taste of ‘normality’ for me. Normality and independence are something that I desperately cling to, as I refuse to give in to Benedict’s attempts to seize control and conquer my body. However, when you have Dystonia a busy day is enough to exhaust you, so a busy week was perhaps a step to far. I still think this week was so worth the last few days of Dystonic antics though!
Imagine this: You wake up in the morning, your eyelids open but you can see nothing due to a spasm pulling your eyes back. You massarge around your eyes blinking violently, trying to beat the first obstacle of the day. Suddenly your sight is back! You celebrate silently, not wanting Benedict to realise you have won, in-case he wants to take revenge. Next you decide to dress quickly before he wakes up and realises what you are doing. You have your top half done, and one leg in your jeans, when suddenly Benedict strikes! Your right leg contorts, as if it’s trying to physically turn backwards, meanwhile your foot has turned under and is dragging along the floor. You stop, take a deep breath, and then start attacking your own leg. Desperately trying to get your jeans over it.
I found this picture earlier on today, and felt that it would be appropriate to share it with you all. Yesterday I was rather down in the dumps due to having a bug for a few days and my Dystonia was playing up big time, then I got emotional about all the changes it had made to my life. This picture really got me thinking about the situation I have found myself in.
When I started this blog, one of my many aims was to bring light to the suffering Dystonia causes by being as open and honest as possible.
Today Benedict (the dystonia alien) decided to really wake up and came out to play. I was happily curled up with my youngest sister watching the 8th Harry Potter film, and all of a sudden my index finger on my right hand started to tremor. This gradually progressed to the rest of my fingers and within a few minutes my whole hand was shaking. I laughed it off, not wanting to worry my sister, and carried on watching the film, trying to ignore my hand. It eventually stopped shaking.
Since my last post my ability to move around has deteriorated rapidly! The shake/tremor in leg has become extremely violent and my leg feels like its made of jelly. The force of the tremor physically shakes the upper parts of my body as I try to hobble about. I have never had a sense of balance, so you can imagine how hard I am finding it to stay upright, when my leg is shaking me to the point that I would fall if I was not being held up. This tremor has made my knee extremely painful, the other night the pain was so excruciating that I ended up having a Non Epileptic Seizure.
Dystonia and Me 