Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

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.

 

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Comments on: "A glimpse into the consequence of pain" (8)

  1. samcharvey said:

    Heartbreaking blog today my amazingly strong girl xx

  2. I know all of this way too well, I praise you because you can describe it so well. when i need help i speed dial my moms cell. she knows if she doesn’t hear anything i need help. You could also try a bell bracelet so when you spasm it jingles and they can hear you.

  3. Michael said:

    You are amazing! I know exactly how you feel. And despite everyone telling me – it’s just anxiety – I know my body better than anyone. It’s just not a normal response for the human body to act out like this. Keep your chin up (voluntarily of course). You could try a heart rate monitor with an alarm so that when the panic sets in, anyone near by will be able to here it. I know sometimes my spasms are so rapid that I am almost like a statue.

  4. Hi. When I went to a Parkinson’s meeting ( a bizarre experience) a guy from social services was giving a talk on alarms designed to give people peace of mind when on their own. There was an alarm which could either be a bracelet (waterproof) or a clip to put on belt which was designed to trigger an alert to other people if the person needed them. It could be set to trigger if the person had a fit (a lot of movement) or it could be set to trigger if the person did not move for a set amount of time. This was for those who had episodes of blacking out and not being able to move. It maybe worth looking into – to give you and family peace of mind that help can come if needed.

  5. Elizabeth Holder said:

    Enjoy your perception and how it really is with dystonia. Sorry for the midwifery occupation not working. Great writing.

  6. […] a medication I try my best to avoid, however I would much rather give in and take it than have a seizure, and right now I’m concerned that with the amount of pain I am in that I will have one. My brain […]

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