A few months ago I did a blog about my Beckers Muscular Dystrophy. This is just an update as to my condition and how I am coping with it.
First of all I can still walk ok. However I can feel myself getting more fatigued than I can ever remember being. For example, I have recently started a new job for which I sit down a lot. Yet when i get home I feel like i have walked for 5 miles, which is very frustrating.
I still have the contractures with my ankles as my Achilles Tendons are still very tight. However, it has become very noticeable that I am spending more and more time on my tip-toes. I have also noticed that I am doing this more often whilst wearing shoes. This is very frustrating.
My arms still hurt as much as before, although because I have been carrying more stuff they have been hurting more often, However, I have noticed that because I am constantly lifting my arms up/down (because of work) I have had to take breaks just to rest them. Even as I am typing this my arm is hurting a bit. My slouch remains the same, although I have felt the odd bit of back pain every now and again. It is a very obvious slouch to both myself and my family. This is caused by a curvature of the spine known as either Kyphosis or Scoliosis. This is something that may require surgery in the future.
I have to say that I have been dieting for the past 4 months which may have affected my muscles. This is a doubled edged sword though as BMD means a higher risk of cardiomyopathy and other Heart and respiratory problems. So I lose weight, I affect my muscles, I don't then I highten my already high risk of Heart problems. How annoying eh?
I have also been really struggling emotionally with it. If you follow me on twitter then you will know that I haven't been particularly happy recently. 90% of this is because of my MD. I worry about it every day. I think about it everyday. I am reminded of it everyday. I think about it when I'm on my tip-toes, when my legs hurt and when my arms hurt. The things that have really caused me emotional problems though are as such: I worry about the fact I may need spinal surgery in the future. I worry about the fact that I will lead to an early death. I worry about the fact that I will need to rely on others in the future to do simple things such as going to the toilet. The biggest worry I have had though is that I will be in a wheelchair by the time I am 40. I think about these everyday. Its not something I can get away from or something I can just forget about. I try to keep positive about it as best I can. Talking to people online has helped me understand what may/may not happen. But as much as that can help, this is a battle I face by myself.
Recently though I have joined my local MDC group, helping to promote awareness of all forms of MD through fundraisers etc. I have also declared an interest in becoming an MDC Trailblazer. This may help myself and other people with the condition in the long run as I will be helping with investigations and trying to get more understanding about the disease.
Anyway I hope you understand this was quite hard for me to write. Hopefully it will make me feel better though as now people know how I feel. I will do another update in a several months again. I hope you liked this and I have helped understanding of the emotional side of the problem. Feel free to comment and I will answer as best I can.
Thankyou.
