Monday, 4 April 2016

20 Years of Muscular Dystrophy

Today marks a weird anniversary; today is 20 years since I was diagnosed with Muscular Dystrophy.
Technically this isn't completely true.
Just over 20 years ago I started having some walking difficulties and was falling over constantly 3 - 8 times a day. I lost a massive amount of weight and at the age of 14 weighed only 6 stone.
Initially I was diagnosed with Polymyositis (an inflammation of the muscles caused by an autoimmune failure) this was later advanced with the diagnosis of the primary cause Muscular Dystrophy; specifically Facioscapularhumeraldystrophy (FSHD) which was the true cause all along.

In all of those years not once have I let it beat me or as it happens taken the Doctors advice fully; I will walk as long as I can even if I need support and equipment. I know that they have a certain amount of predictive growth of where they believe that my health will be in 5, 10 and even 15 years but that doesn’t stop me, not one tiny bit, from doing the things I want to do.

Today is a weird day for me mostly because it sits at the back of my mind that I have had these difficulties most of my life. It is a day when I keep stock of what I can and cannot do in comparison to last year; an example of this is my ability to really lift anything of weight with my left arm.
However, it is still a normal day where I get on and I do what I always do. I will be with the boys; we will play, learn, shop, cook and be “normal”.

Following a lot of support from friends I have spent this last year openly talking about my disability and how it affects me day to day; something that I hope that I can continue to do.
It took a big step to finally open up about my Muscular Dystrophy but I am so pleased that I did; I felt it showed the side of me that not many people would really realise is going on.

From there I even showed you guys the new adaptions that my specialists arranged for me to improve my walking; despite them being painful to use.
There have also been the harder posts when I shared how scared I am with the noticed decline in my walking and if it was time to use a wheelchair, what happens when I fall and more recently the fact that I felt I pushed myself to much making both myself and the boys vulnerable.

The thing that I am starting to realise is that I am still not really talking about it, about the daily struggle that I undertake, the amount of pain that I am in or how much it has really progressed; I am sure that I will cover these at some point.
Many of you have followed my journey and have a further understanding of my health and if you don’t then read some of the above posts. Many of you have met me in person and have seen first-hand what my health is like.

With all of this in mind I thought I would offer you a chance to ask questions to me about my health. Anything that you like and I will happily and truthfully answer them.
Ask away and don’t hold back!

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