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

Posts tagged ‘help’

A glimpse into the consequence of pain

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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The daily battles

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.

The battle for my leg

Yesterday the little dystonia alien decided it was bored of manipulating my face, arm and hand. It decided it needed yet another toy. It chose my leg! For a long time now my leg has not been completely normal, every now and then it would over bend or I would get odd sensations running up and down it. I choose to ignore these niggles and put it down to issues I had had previously with my leg. However the last 4 or 5 days these niggles had got more frequent and were more noticeable, I decided that now was the time to speak up and express my concerns. So off we went to the doctors and yet another medicine was added to my cocktail of drugs, in attempt to try and lessen the dystonia aliens effects.

Yesterday the alien decided to up its game again. Instead of causing the usual niggles, it decided to cause a painful spasm that twisted my foot inwards and curled my toes up, then it decided to shake violently. The alien decided to do this each time I attempted to walk. In the end I could just about walk on the tips of my toes, however sometimes this set the alien off as well. So I spent the day hopping around, trying to get on with the day as usual and attempting to distract my self. However when I got up to try and walk today, I decided to try and walk normally, hoping that the spasm would not return. But after taking two steps the alien decided to play games, the spasms once again twisted my foot inwards at a bent angle and curled my toes up before shaking violently.

Due to the little dystonia alien also affecting my right arm and hand, I cannot even walk with a crutch, as holding a crutch would set off the spasm in that hand and arm. Therefore I have had to resort to using a wheelchair for getting out and about. Its not a ideal option but for the time being its a realistic one. I went out shopping with my parents to get a few bits today in my wheelchair. At first I was bit anxious, I knew that now more than ever I would be stared at. However once again I found that the stares just reassured me that I could do this, that I didn’t mind. After all, if it was the other way round I would most likely also be just as rude and look.

I feel so thankful for the support and love I get from my family and friends. Without them it would  be a much harder battle with dystonia. With their love, help and support, I am able to get on with daily life and be happy. I know that no matter how hard things get, they will always be there for me. I am so thankful for them!

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