19 Today!

Today is a weird anniversary for me; it is a day that I rarely forget each year because today is the day I was first diagnosed my physical health problems.

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: A muscle wasting condition)

I have been lucky this last month to meet a few friends through blogging. Al from The Dad Network, Youtube Vlogger Tommy and Ally from Messedupmum; each meeting has been enjoyable because I finally got to meet people that I have been talking to for months; However, although through the blog I have often discussed that I am disabled and even aspects of the disability I had a worry that my disability would be overly noticeable and might be the ‘Elephant in the room’.

I was exceedingly pleased that on these meet ups that these lovely people accepted me for me but on both occasions two things happened that made me think long and hard about doing this specific post; the first was that I fell over: When I met Al and Tommy I did an impressive ninja move where I fell and did a roll. (I know what you were thinking I was just showing off!) And when I met Ally my leg twitched, gave way and I fell over (As well as a few other comical moments)

The second part that happened is something that, again, I was pleased about; they all asked open questions.

Al asked if “It hurt” and Ally asked if there was anything that she could do, not out of pity more through her previous work and training and knowing that at times there can be situations that could be made easier even if some, like myself, are stubborn enough not to ask.

I thought then that I would answer these questions.

Does it hurt?

Yes, is the most honest answer; the only way I can describe it is probably something that all boys do when we are at school; I am unaware if this was something specifically that girls tried or not. When in technology classes there were always workbench clamps. As a pupil, and a typical teenage boy, we use to put our hands, arms and even on occasion legs in these clamps and tighten them up.

This is what it is like daily for me. I wake up in the morning and my muscles ache. From that and throughout the day my muscles feel like that they are tightening, like every muscle is in a clamp, and by the end of the day the muscles are tight, tense and often burning. Something that, I hope, you can imagine would feel quite painful.

Is there anything you can do?

This is a difficult one. There isn’t anything you can do to help directly. But be aware that I am stubborn and want to be independent so there are times that i may be struggling to do something that might be deemed ‘normal everyday activity’. Often in those cases the best thing is not to offer, not to patronise and say “would you like me to do that for you” but instead just do it. Having trouble carrying something of weight? Don’t ask “Would you like me to carry that for you?” just say “Give it here and go and do this for me”

In this scenario you are not showing that you have taken pity on me but instead you’re doing what you would do for anyone. If you saw anyone struggling, disabled or not, then you would help. Rather than highlight that you see them struggling.

There are instances where my muscles will give way, I will fall over, I will drop something that I am carrying or even twitch in certain ways. But that’s me.

But not once have I 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.

I wanted to write this post to put two of the most common questions out there and in doing so be open about how it affects me. I haven’t though written this for sympathy; I don’t seek sympathy because there is nothing to feel sorry for because physically I am pretty amazing in what I do.

I also wanted to do something for questions; I know everyone, in some way, would have questions about Muscular Dystrophy and how it affects me and to be honest I would rather people just ask straightforward questions.  It isn’t a condition that many people might have heard of but I am also incredibly open about it too.  

So do you have any questions? Feel free to ask because, ultimately, I am probably more knowledgeable than a lot of online sources etc.