Sunday 22 January 2017


As with all my Muscular Dystrophy related posts I feel like I need to write down and document what living with it is like as there doesn’t seem to be anything online saying it as it is.
You may have noticed that I have been rather quiet here on the blog this last week. Usually when this is the case I either blame the fact that I have been busy or that I have lost my blogging mojo. I am in pain every day and it does often hinder what I can do or feel like doing but this week has been worse.

Due to some serious incompetency of my local GP who couldn’t calculate a full month worth of medication and with the circumstances of Christmas and having 2 months’ worth of medication meant that I was 8 days without anything to help. This, coupled with the fact that I am on antipsychotics due to my DPD, they doctors weren’t comfortable giving me more that the required medication in case “I did something silly” (although could give me 2 months over Christmas?!)
I managed to kick up a fuss but the best would mean that I would go a solid 4 days without anything.

Pain is a subjective thing and I know everyone has different receptive levels but there is something quite different about chronic pain that only people who experience it will understand. The problem is, as mentioned above, I am in pain every day even with taking daily medication so this would obviously get a lot worse.
So what do I feel?

The thing about my particular strand of MD is that it affects all muscles. It is after all a dystrophy and not a direct atrophy. So, there isn’t a muscle that doesn’t hurt.
The biggest feeling is an ache; a pulling of the muscles that make them feels weighted and stiff.

This makes movement difficult. I feel like I have gone for a long run or spent a few hours at the gym doing some heavy weightlifting when in fact I have just woken up. Yet it affects other areas too that most wouldn’t expect.
My fingers, for example, ache and become stiff. It is a strange thing that I am sure many may have missed but how often do you feel the muscles in your fingers?

You can imagine then that the simplest movements can become the most painful. Sitting in a position to write and type and just create the easiest of movements left me in tears.
The same can be said with my eyes. The pain they were in was ridiculous; all I wanted to do was keep my eyes permanently shut.

Then there is the burning.
I would say that my muscles burn but that isn’t quite right. It burns and feels hot but it is also a tingling sensation that mixes with tightness across the surface area.

This was how my day would start and throughout the day it got worse. The pain felt like someone had clamps across every muscle and just like clockwork someone would tighten the handle and make it squeeze a little more whilst also making my muscles an ever progressive incendiary. The more the day went on the more it intensified.
It was horrid and there was literally nothing I could do about it. I had been taking pain killers and rubbing in deep heat but this had little effect.

Luckily the doctor’s day had come and I could dose myself up but now I was dealing with the knock on effect of days without it. I suppose in many ways it is what marathon entrants must feel after taking part. It isn’t just an instant recovery.
I am now on day 8 and I am just starting to feel more human. The pain has lessened and I am almost back to my “normal” pain levels. Sleep is coming back to me and I am spending less days crying through the sheer agony.

I hate that this is part of my life and would never hope that anyone would suffer in this way because there isn’t anything like it but it does need recording and speaking about because without doing so it will stay unknown.
Muscular Dystrophy is a cruel and wild beast that slowly and painfully leads you through torture and this is just one small example.

Good news is that I am back on here and if anything normal routine can precede and you can enjoy my normal drivel.

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