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

Posts tagged ‘brace’

Rare Disease Day 2020

When I met my partner Damon back in 2016 I was upfront about the fact that I had a whole host of chronic conditions some of which would deteriorate as I aged. It was a subject that I broached on our first date, romantic I know, but it was important to me that he knew life with me would not be an easy one; our first date lasted five hours. What was meant to be coffee, turned into a museum trip, and hours spent talking on a bench overlooking the River Cherwell. At the time my Dystonia was my most limiting condition. The EDS was annoying and had its fair share of debilitating moments but in comparison was easy enough to deal with.

However over the years with a good combination of medication and very regular Botox injections my Dystonia is often far more controlled, yet my EDS has spiralled dramatically so. My jaw which takes the brunt of both conditions is in need of replacement yet both conditions make replacement not necessarily the easiest call for my surgical team; it’s an ongoing argument. My knees are in a similar state. They too need replaced. They currently sublex at 0 and 30 degrees constantly yet bracing doesn’t seem to work due to the change in position with each time the knees come out of place. I frequently joke that I’m falling apart and honestly it feels that way.

The latest part of me to be affected is my hearing. My hearing tests have showed that im hearing impaired and im awaiting further appointments on the next steps to see what aids will help me. Whilst my hearing being affected isn’t overly surprising, it wasn’t something at 27 I expected to be told. However after almost a year of struggling I knew it was time to give in and get some help.

If you look at me you could be forgiven for not realising anything was wrong. Which is one of the reasons Rare Disease Day is so important. Disabilities come in all variations and I for one never look the same one day to the next.

I always say no hospital untill I’m unconcious.

A trip to the Doctors

Cartoon DoctorI paid a visit to my doctor today, as my Dystonic leg is still really bad, and the extreme tremor has been going on for 11 days now. I was hoping he would be able to prescribe me some sort of muscle relaxant to try to take the edge of it. I also wanted to discuss with him about being referred to an Orthotic department, to talk about getting some sort of splint or brace for my leg, as I have talked to and read about people who have tried this and good results.

My doctor was not to sure what to do about the tremor in my right leg, and said that hopefully it was just one of those things that comes and then goes. I am really hoping that he is right as I find this extreme tremor very difficult to handle. It has really restricted how much I can do, for example in the day when I am on my own, I literally have to spend the day in bed, as I need people to help me hop around. I have decided that if by this time next week it is still bad then I shall go back to my Doctor and ask for him to prescribe me a muscle relaxant just so we can see if it works.

He seemed rather interested in my suggestion to try a brace or splint, and has said that he will write a letter to the surgical Orthotic team at my local hospital, and we will go from there. This was very positive, as I had expected him to say it would be best to discuss it with my consultant first and let my consultant handle it.

Overall it was a very positive appointment. Considering my Doctor knows extremely little about Dystonia, he really does try his best to help me the best he can. I hope that in the nicest way possible that I won’t have to see him next week. Just going to have keep my fingers crossed and hope that my right leg calms itself down.

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