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

Posts tagged ‘time’

Tongue Twister

Last night my little Dystonia alien decided to play a rather amusing game with my tongue. Now he has done similar things with it before e.g the spasm causing it to poke out or to wriggle when I try to talk. However before these spasms have only lasted for minutes. Last nights tongue spasm lasted for around 45 minutes.

My tongue felt as if it had folded itself under in half. It was not painful, but it was an extremely odd sensation. I then made the mistake of trying to talk. My words came out slurred and the majority of them were impossible for my mother to understand. However I am a complete chatterbox, I love to talk! So my mother and I sat there for a while with me trying to talk and my mum having no understanding at all of what I was trying to say.

This spasm did however provide lots of laughter. My mum and I, were doubled up in fits of laughter at it. As soon as we calmed down I would try to talk to see if my tongue was behaving yet, and we would end up shaking with laughter again. It was brilliant. As much as I would hate this spasm to keep getting more frequent and longer, I must admit it was a funny evening. In a way it provided us with a much-needed up lifting period of time.

Though I do feel sorry for my mum, for once my tongue spasm had ceased, I decided to tell her exactly what I had tried to say to her for 45 minutes  which was nowhere near as funny as me telling her when my tongue was in spasm. Anyone who did not know what was going on most likely thought I was a drunken lunatic.

As much as I dislike having Dystonia, I am glad last nights tongue spasms happened, as it reminded me that even at times when I am not in control, I can still laugh and have a good time.

 

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Staying Strong!

I saw this photo/quote, and felt like I should share it with you all.

I, personally, find its words to ring true. As much as we wish life was perfect, nobody’s life is. Everyone has their own struggles in life, be it financial, domestic, illness, loss etc. At some point in life we will ask ourselves, why me?! Why am I having to go through this, I can’t deal with it! If you have not asked yourself this yet, then I am sorry to inform you that eventually you will. However when it comes to that point in time, when you are asking why me? That is when you must remember that if you were not strong enough to deal with it, then you would not be going through it. The experience may make you feel like it will never get better, and that is the moment you must remember that it will get better and that whatever you have had to struggle through, will make you a better and even stronger person at the end of it.

I have asked myself, why me, so many times recently. The question normally arises when I am going through a particularly bad spasm or am in a lot of pain. However, each time the pain stops and I relax, I can think more clearly, and I know that I would much rather go through this than see a member of my family, or anyone else go through it. I know that I am strong enough to deal with it and that’s why it is me who has Dystonia.

It is up to us to make the best out of a bad situation. For me, I have decided that instead of curling up in a ball and letting myself become a ‘sufferer’, I shall instead be an advocate for the condition. I shall try my best to make a difference! You never know, I might!

So if you ever are thinking, Why me?! Remember the above quote and know that if you were not strong enough for this life, you would not have been given it!

 

A subtle Reminder

 Today I decided to have a nice long hot bath, as I felt like I had been run over by a truck repeatedly . After managing to bottom bump up the stairs, it was heavenly to be able to relax in the bath. I cannot describe how blissful it was to let my muscles relax in the heat. However it turned out that the relaxation was not to last. Without thinking I poured the shower gel onto my right hand. Immediately my right hand and arm went into a rather painful spasm.

This was rather disappointing, as for the last few weeks my arm and hand have actually behaved rather well (as long as I am not cold), and I had reached a stage where I was not to worried about it if I was indoors. The only reason for my arm and hand going into spasm, which I can think of, is that the coldness of the shower gel on my hand, in comparison to the heat of the bath, set of the Dystonic reaction.

This seemed to then set the tone for the rest of the day. I attempted to get on with the day and relax, however my little Dystonia alien seemed to have other ideas. My leg over the whole day has played up, so I have tried to avoid using it as much as possible. During dinner my arm and hand again went into spasm, after I attempted to pick up my spoon with my right hand. This spasm then went on to last a good 40 or so minutes before relaxing.

However I am trying to think positively as this is the first time in awhile that my right arm and hand have played up. This is a reassuring thought, so I am not panicking to much. Today has reminded me that I cannot take the days when bits of my body behave for granted! I need to value each day of peace, as there is no way of knowing what will happen one day to the next!

 

Dystonia Alien Plays Games

Tonight the dystonia alien decided to show me what else it could do with my hand. Normally when my spasms last for a long period of time we end up trying to force them to release. However this particular spasm seemed to be determined to stay for as long as it wanted. Every-time we thought we had managed to release it, it decided to return. In the end we gave up, and decided to let the dystonia alien have its fun. The theory was that if we let it run its course, then perhaps the time in-between the spasm finishing and then returning would be longer. As I am writing this, it is still in spasm. If the muscles and tendons in my hand had the ability to scream, right now they would be.

The image shows the Dystonia aliens latest spasm game…

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