Myotonic Dystrophy

Understanding Myotonic Dystrophy
Close up of dog sitting down looking at me
That dog is definitely looking at me in a funny way

But Life Carries On

MD doesn’t mean that everything else in my life stops. We all have the daily struggles. It’s called living. I have the same thoughts as everyone else... I assume:

  • Damn, I think that’s a grey hair.
  • “Son. Homework. Now”.
  • I think the dog’s looking at me funny.
  • Oh no, the washing machine making a weird noise.
  • Am I too old to get a nipple piercing
  • What day is it? What date?
  • I definitely think I am an above average driver.
  • Nothing. Literally nothing.

I get up at 7am every day. My body and mind are screaming at me not to move. You can’t get up. You are still tired, it’s going to hurt just to stand up. It will really hurt. But if my son can get up at the same time, get dressed, have breakfast and go to school then the very least I can do is to be up at the same time and wish him well for the day. So I get up, it is not easy, it hurts, but I get up. Daily, I want to set an example as best I can.

That dog is definitely looking at me in a funny way.

I have the same basic responsibilities as everyone else.

  • Paying the bills (Water, electricity, Council tax and many more☹)
  • Making sure son has the essentials for school
  • Checking house insurance is up to date, the car has its MOT and insurance. Am I choosing the right cover? What’s a reputable company? Is there one?
  • Make sure medical appointments are kept. I have more than most but I make sure the whole family has dental and health checks. I make sure we all get a flu jab for example.
  • Has the dog been fed?
  • Is this list the most boring thing you have ever read?

That dog is definitely looking at me in a funny way.

I still have friends. I vote. I take my family to the beach on a sunny day. We eat ice cream and later fish and chips. My wife and I host BBQs in the summer and have a new year’s party at the end of the year. We have family movie nights or go to the cinema. I enjoy takeaways. I like going to the local Toby Carvery.

What I am saying is MD does not stop me from doing the exact same things as everyone else.

I’m still a husband.

I’m still a dad.

I’m still a friend.

I’m still a person who worries about bills, laughs at stupid things, watches films, eats too much takeaway and wonders why the washing machine is making that noise.

But, MD…. you ain’t winning.

That dog is definitely looking at me in a funny way.