Tag: life

Posted in October

Counting my lucky stars

Posted on by dystoniaandme

This last week, has for me, been full of thoughts to chew on. This week, there has been many programmes on for Stand up to Cancer, all of them heart wrenching yet inspirational.These people have to live with a disease that may or may not kill them, their life is a huge unknown. Yet despite having this devastating illness, having to go through emotionally and physically painful treatment, and so much more, they hold their heads high and they try to live their lives to the fullest. They are truly inspirational.

This weekend particularly, I have thought about them. How much they have to cope with, the pain they must deal with. Over this weekend both my facial and foot spasms have played up. They have been both painful and debilitating. Yet I know that none of the games the dystonia alien plays will cause me any long-lasting harm. They are simply irritating and painful. A nuisance, that I must and will learn to put up with.

I have to count my lucky stars and be thankful. I may have a disease that is currently incurable, that causes pain, embarrassment and is debilitating, but with the right treatment my symptoms could be dramatically improved. My illness will not kill me. It has changed the path I was on but it will make me stronger for it. I have to be thankful for the disease I have. My life could be so much worse.

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 Archive, October

There is always hope!

Posted on by dystoniaandme

There is currently no known cure for Dystonia, patients are expected to accept this. Sufferers live in the knowledge that this is what their life will be like and they will just have to learn to get on with it. But why should we have to just accept it? I understand that acceptance is necessary to deal with this condition. Yet the way this acceptance is done is so negative! Why should we have to think oh great, this is it? Instead we should be thinking, Ok, so this is what I have, but science is always moving forward, you never know, they might find a cure sooner or later.

In my mind I am confident that I won’t always be this way, I remain hopefully that there will be a cure. It may not be for 10 or 20 years, but there will be a cure. They are already finding medicines and procedures that can help with dystonia, so they are already on the path to discover the cure. Without hope and confidence, a life with dystonia would be rather depressing! We should put faith in the scientists and researchers to keep on looking until they get the answer.

After all there is ALWAYS hope!!

Posted in September

Fingers crossed

Posted on by dystoniaandme

After months of battling with the NHS I have finally received a date for an appointment with a neurologist up in London who specialises in movement disorders such as Dystonia. Im trying not to get my hopes to high as I have met many doctors who just are not able to treat me, but I am hopeful that this doctor shall 🙂 

Finally feel like I am heading in the right direction finally.   

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

Pain is inevitable. Suffering is optional

Posted on by dystoniaandme

My quote of the day has to be ‘Pain is inevitable. Suffering is optional’.  I find this quote rather fitting. Having dystonia means that every day and every night in full of pain, some days worse than others. However just because I am in pain does not mean I should stop and give up. If anything I embrace the pain, I accept that it is part of me but it does not define me.

Dystonia makes many daily activities like cooking, washing my hair, going for a walk etc. rather hard, but that is no excuse for me to lie in bed all day feeling sorry for myself. Instead it inspires me to get up and go, to think what can I do and then go and do it. I love horse riding, its going to be difficult to do, but I am not going to let pain stop me from giving it a go!

Dystonia causes a hell of a lot of pain. I am going to achieve everyone of my goals despite it!