Tag: Christmas

Posted in Archive, December

Dystonia Update, Consultant Musings, + More!

Posted on by dystoniaandme

With the exception of the last few days, the last few weeks my body (apart from my jaw) has not been too bad. Which has been a very nice break for me, but has also lulled me into a false sense of security. When my foot went into spasm the other evening I was rather shocked. That day my whole leg had felt odd, like someone was trying to pull it out of its socket. I found myself to be rather upset by the spasm. Part of me had hoped that I would have a miracle recovery and I would return to uni in September without a worry. Now I know this whole miracle recovery idea was a bit silly, after all Dystonia is not known for being predictable, it does what it wants, when it wants, how it wants, for as long as it wants. However there is still hope for Uni, I have ten months to somehow get better/get my dystonia under control in, so I am remaining hopeful. I have thrown myself into studying/revision, as I think that it is the only thing keeping me sane at the moment.

Last Sunday, my consultant finally replied to our email stating that he would administer Botox injections into my jaw for me, and that he would do that next week. This created some confusion about when he would do it. However a whole week has passed since we heard from him, so that rules out that week. So it shall be interesting to see whether he contacts us to do the injections this week or if we shall have to chase him some more.

In January I am going to meet my local MP, to discuss with him the many pitfalls of the NHS. I have composed a long list of points, that I wish to discuss, over the last few months. I am looking forward to how he shall respond to my questions or if he shall try defend the system.

I am looking forward to celebrating Christmas and my 20th with my family. I am praying that it shall be a happy occasion with no Dystonic movements and be Seizure free.

I hope you all have a Merry Christmas and a Fantastic New Year!!

 

Posted in Archive, november

Take The Good With The Bad

Posted on by dystoniaandme

There is currently an advert on the T.V (I can’t remember which one it is, it looks like a Christmas one) that has a line in it that I love, ‘Take the good with the bad’.  This is so true, everyone goes through good and bad experiences in life, and at the end of the day, it is up to them what they choose to take from that experience.

Dystonia is not what I would call a good experience, to be rather honest it sucks and I would rather not have it, however this does not mean that I won’t take something positive from the experience. For example, because of Dystonia I did a charity run and raised £715 for the Dystonia society. Instead of focusing on all the negatives that Dystonia causes, I make myself think about the positives, such as I managed to wrap all the Christmas presents I had brought one-handed and they looked better than normal, I even wrote my Christmas cards with my left hand!

I understand that sometimes it can be hard to focus on the positives when you are in the midst of a bad time. However I think that forcing yourself to focus on the positives is the best thing you can do, it gives you a distraction from the negative. There is no point in sitting around wallowing, when you can be thinking of the positives; such as your personal achievements, and trying to figure out how you can make something good out of the experience.

Posted in Archive, november

The Weather and My Dystonia

Posted on by dystoniaandme

So it is getting to the time of year I love! The trees are turning beautiful colours, the air is getting cooler which always makes me start hoping for snow, and the shops start displaying amazing Christmas decorations. Just going out and about at this time of year puts a giant smile on my face. However my Dystonia alien has decided that he hates the cold! Every time we venture out into the cold, my Dystonia alien acts up, causing my right arm to spasm and shake violently.

I am therefore putting my foot down. The Dystonia alien may have control of the majority of my body but it shall not take control over my favourite time of year! I want to be able to go out in the snow! When out shopping today with my mum, we invested in some warm/fluffy mittens, and a lovely warm blanket to cover me up with when I am out in my wheelchair. My theory is if I wear loads of layers and cover myself up as much as possible then my body should hopefully not go into spasm.

It shall be another experiment, which hopefully turn out to be just as positive as the last.