Fighting Dystonia, Chronic Lyme, EDS Type 2 & more… any questions?

Posts tagged ‘eyes’

My Dystonia and My Dystonia Experiment

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.

 

My thoughts and theory’s

So today my head it full of things bouncing off each other. I had a theory that I touched on briefly post or two ago that I have now put into action. Today I went to specsavers to get my eyes tested, as I was convinced my last eye prescription was wrong, my thoughts was right. My eyes often feel like there being strained and I find it hard to focus on words or the TV etc. as it really hurts my eyes. This, I think, is why my eyes then spasm upwards and go blind. Therefore today when I purchased my new glasses I also had a tint put on them and anti-glare (the Optician felt it was necessary, and would help my eyes a lot). If my theory is right then this should completely stop my blindness. I am hoping that my theory is right!

I would love to talk to my consultant about this theory and all the amazing improvements I am making at the moment, so that he is kept up to date and could offer his own thoughts and advice. Somehow though I don’t think this will happen any time soon, especially as the urgent email (he told us to email him if we needed him) we sent him 4 weeks ago has still gone unanswered, despite phoning his secretary to chase it each week. This I find slightly odd as when I was not his patient he answered our emails the very next day. I shall just wait/chase them some more and see what happens.

I am still mega excited about the prospect of returning to uni in September! I am still improving a little bit more ever day, which I am taking as a positive sign. Therefore I have completely thrown myself back into studying/revising the topics we did at uni. I just cannot wait to be back there!

 

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