Tag: alien

Posted in Archive, October

The daily battles

Posted on by dystoniaandme

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.

Posted in September

The battle for my leg

Posted on by dystoniaandme

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!

Posted in September

Laughter is the best medicine!

Posted on by dystoniaandme

Having Dystonia means that no day will be the same as any other. Some days may be a good day and others are not so good. This is a fact I have readily accepted. However what I was not prepared for was the spasms that would give everyone around me a shock yet provide amusement simultaneously.

The other day I went to put a knife away and all of a sudden the little dystonia alien decided to act up. Before anyone could help me, the spasm had caused the knife to be flung out of hand, clattering on the ground at the other side of the room. This incident could be one to fear, knife throwing after all is rather dangerous, however all of us could not help ourselves, we all burst into laughter. It was such a random and sudden incident that was shocking yet amusing. Then the next day when my body decided to spasm I sent a plastic cup full of juice flying across the room, making a mess of myself and the floor, but again none of us could help ourselves we had to laugh.

The way I see it is that you have to very clear cut options with dystonia, you can either be angry and become reclusive and isolate yourself so as to avoid potentially embarrassing situations or you can accept that this is what your body is doing, accept the fact you will have good and bad days, yet be able to laugh at the situation, find the positive side to life. After all it is widely known that laughter is the best medicine.

Posted in September

I can smile!

Posted on by dystoniaandme

For the first time since July 22nd I can smile! It takes a bit of effort due to all the botoux but I don’t care!!!

The operation so far is looking like a success! No pain, I can open my mouth, I can chew, my lips are still a tiny bit wonky but I don’t care, it can take a few days to see the full results of the botoux. Having no pain in my face, is the most amazing feeling! Now when my face decides to spasm, its is only my eyes, mouth and nose that spasm, my cheeks stay blissfully still!

I feel so lucky to have been treated by a surgeon who actually understands what Dystonia is, who listens to what you have to say and cares and likes to put some extra amount of botoux in as he finds it has better results! 

So little dystonia alien, I feel like that’s another point to me… I’m catching up. 

 

🙂

Posted in September

Another fierce battle for control

Posted on by dystoniaandme

Today i decided to attempt the dangerous  task of straightening my hair. A task that to most is rather simple and requires very little brain power. For me it involved a fierce battle between myself and the alien, both of us fighting for control of my face, right arm and hand.

Have you ever tried straightening your hair, whilst your arm and the hand that you would normally use is stuck in a painful spasm behind your head? For those of you who are fortunate enough not to have experienced this, i can assure you it is not an easy task. After a long twenty minutes I gave in to the little alien, feeling rather proud of myself. My hair was not great but I had made a darn good attempt. A small win over the alien.

So far the alien is winning the majority of our frequent battle, but I am slowly catching up.