Hard to believe it’s nearly 7 years since I first wrote this article https://www.blogger.com/blogger.g?blogID=3909631325093680810#editor/target=post;postID=4800339557559087098;onPublishedMenu=allposts;onClosedMenu=allposts;postNum=8;src=postname
I was in such a dark place when I wrote that. However, a lot has happened since then so I thought I’d provide an update (that’s if anyone wants to read it haha) on my condition.
First of all let me give a brief description of my condition. I have a condition called Becker’s Muscular Dystrophy. This is a neuromuscular condition, caused by a lack of protein called Dystrophin. This causes my muscles to lose their strength and structure. This affects mainly my legs and arms. However, it also causes problems with both the Heart and Lungs. It may also lead to issues such as Kyphosis (spinal curvature). Eventually it will lead to permanently being in a wheelchair as my legs lose even more strength. However there is no set timescale. Unfortunately there is no cure.
Anyway, I thought I would try and give an update on my condition and how I cope with it. Firstly, I cannot stretch my feet too much as my calf muscles and Achilles’ tendons are so tight. This became very apparent when learning to drive and using the pedals was tough. My feet also now tend to point inwards. Initially I didn’t even realise this. It was my parents who pointed this out to me. To combat this I try my best to do as many of my floor exercises as possible. I also have to wear splints every night (trust me, wearing them is no fun). My thigh muscles are also very weak at times, hence why I try to avoid stairs where possible as they can be tiring. I also have a set of exercises that I should be doing to combat this too. At this time I should say that these exercises aren’t to increase my muscle strength, they are merely to retain what strength I have in them. As for my arms, sometimes they’re fine but they can be hit and miss. Sometimes I have no problems with them, sometimes I struggle to lift a bag of shopping. At times I can lift boxes, other times I can’t push myself out of bed so end up flopping around like a fish on my bed. As you can probably tell my condition is very unpredictable. No day is ever the same.
My back does have some issues now. It is slightly curved. Standing for any length of time can be painful and regular rests are needed. Even though it’s a slight curvature, it can cause a lot pain to the extent that I can struggle to love even when sat down.
In terms of my mentality, whilst I try and remain cool with my issues, I struggle a lot with it at times. The idea of being in a wheelchair and not being self reliant terrifies me. The idea of having surgeries terrifies me too. The worries about heart issues will always be there even though I have regular heart tests. Knowing that my life will probably be shorter than average does play on my mind. I do know that my issues are minor compared to others with my same condition but I can’t help but worry about it.
Having said all this, there is help out there. The great guys and girls at http://www.musculardystrophyuk.org/ are raising money to provide people such as myself and others with the best care needed. They do this by using initiatives such as the “Makes Today Count” skydive and “Move A Mile For Muscles”. They also provide funding for cutting edge research on things such as Exxon Skipping and other research, helping to prolong the life of people with muscle wasting conditions.
There are also the Muscular Dystrophy Trailblazers. These are people who are at the forefront of the campaign, trying to raise awareness of Muscular Dystrophy. They also try and provide social justice for people with disabilities. They report on conditions faced by people with disabilities and try and work with varying governing bodies, trying to make the world a fairer place.
