Can I please just start this blog post with an apology. I am so sorry that I have not posted in over a month, I had the cold for over 2 weeks which was not the best (HERE is a video where I explain why it can be worse for me than for others). I also have had other commitments and been trying to fit in videoing my YouTube videos so that I can upload on a weekly basis on a Sunday at 5pm. Anyway, I am back now and as well as uploading weekly onto YouTube I am going to try and upload a blog post if not weekly on a Wednesday at 5pm then fortnightly.
I filmed a video a few of weeks ago that in some cases was very hard for me to do. The reason that it was hard was because I shared aspects of my disability that I haven’t shared with anyone apart from family and very close friends. Even then they may know about these different things but they may not know why I have them. If you would like to see this video you can find it HERE, in this video I give more of an insight into my disability and explain my health conditions as well as show the machines that help me live my life to the fullest. Although, I like to keep my YouTube videos as short and brief as possible so I decided to write a blog post to explain everything in more detail.
So, let’s start at the beginning. Before I was born there was no indication that I had any disability however, once I was born it was discovered that I had Congenital Muscular Dystrophy (CMD). The two main symptoms that CMD has is overall muscle weakness and possible joint stiffness or looseness. Other symptoms depend on the type of CMD and although some types may result in intellectual disabilities, learning disabilities, eye defects or seizures I am very fortunate to only have a spinal curvature and respiratory insufficiency’s.
When I was born my elbows and knees were bent into my chest which signified joint stiffness, but with physio therapy everyday it got better. I’m still not able to fully straighten my arms or legs and this is a big problem I have with my legs; my bones aren’t as strong as other peoples and because I have broken my legs a few times growing up I am always scared I am going to hurt them again. Also a few days after birth I got a muscle biopsy which showed results of muscle weakness. As I demonstrated in my video it is hard for me to do most things physically for myself, simple things like opening a bottle of juice. I don’t struggle though because I have someone with me most of the time, usually one of my helpers and if not my friends or family. I am a very independent person mentally, I just need someone to help me physically to do everything I can’t do myself.
There are also two other disorders that I have that are linked to CMD. These conditions are Spinal Scoliosis and Central Core Myopathy.
Central Core Myopathy has very similar symptoms to CMD, but one symptom which CMD doesn’t have is hip dislocation. That doesn’t sound good I know but I was born with this so I never felt pain because it was normal to me, however I feel it has gotten worse as I have gotten older. In fact, I didn’t even know they were dislocated till it came up at a hospital appointment a few years ago, my parents did but I didn’t. I am not in pain with it daily, but it can be sore occasionally. Especially if I lie on one side of my body for too long.
Spinal Scoliosis links into the symptom of spinal curvature within CMD. My back curves to the left which results in a certain point on my back being sensitive when I put pressure on it. Having this curvature can be a pain at times. The main issue is obviously comfort. The back cushion that I have in my wheelchair is moulded to my back, which although my cushion can be removed from my wheelchair I only really feel comfortable sitting in my wheelchair because I can recline my back rest which means that if I am uncomfortable I can change my position myself.
This also helps with my respiratory insufficiency’s because if I become breathless then I can change my position to help me breath better. However, I am going to leave it there for now and continue next week where I will talk about my respiratory problems and my journey of having to get used to having a feeding tube.