Tag: shopping

Posted in Archive, December

My Dystonia and My Dystonia Experiment

Posted on by dystoniaandme

I am happy to announce that over the Christmas period my Dystonia behaved, with the exception of one or two moments. The relief I felt after going Christmas day and my birthday without having my dystonia play up was immense! I had worried a lot about spending the Christmas period in agony, thank fully I ended up worrying for nothing. To make things even better I even managed to spend 6 hours clothes shopping with my family, with only my eyes playing up now and then. I managed to get in and out of my wheelchair frequently so I could try clothes on without my leg making to much of a fuss. By the end of the day, I was exhausted and found it very difficult to move around, but this did not bother me as the fact I managed to spend so long out and about and try clothes on was a major achievement for me!

Yesterday I picked up my glasses from the opticians, this means that I can now start judging whether it is my eyes straining that causes my eyes to spasm and go blind. Every day, I am going to keep a diary of what activities I have done and how my eyes have reacted to each activity, this will enable me to have a fairly accurate idea (after a number of weeks) as to whether my theory to why I go blind is right or not. I am quiet excited, as if I am right and wearing glasses helps stop the spasms, this will make a significant impact on my life.

My jaw dystonia is really playing up at the moment, which in turn brings on my Non Epileptic Seizures. Despite my consultant emailing me 3 weeks ago saying he would do my Botox injections next week, I have still not received a date for it to be done. When I finally get to see him and have the injections done, I am going to ask him if there is anyway we can just book a date in advance, for around the time  the injections stop working, to have treatment again. To me this is a logical step to make, however it is becoming more and more apparent to me that the NHS system is not necessarily a logical one.

I hope you all had a fantastic Christmas  and that you all have a great new year.

 

Posted in Archive, november

On Top Of The World

Posted on by dystoniaandme

Today I have woken up and found myself to be in a great mood, with a huge grin spread across my face! The reason for this is that over the last few weeks I have slowly accomplished more and more. I am feeling pretty proud of myself! When my Dystonia started affecting more of my body, I found myself focusing on all the things I wouldn’t be able to do/ would struggle to do. Yet now as I look back over the last few months, I find that I have managed to do so much more than I ever thought I would be able to.

Though some of these accomplishments may seem small, such as learning to write with my left hand, for me these are huge steps forwards, that fill me with hope. I can now fill out forms with my left hand, I can go out in public and not worry about what people think of me and I can go shopping and try on clothes!!! All these little things reassure me that I can lead a normal life and enjoy it, despite my dystonia. At the end of the day, my dystonia is part of me, but it does not define me. It is my choices and actions that do.