Since I’m fairly new to the blogging scene, I thought it would be beneficial for all if you knew a little more about me and my everyday life.
As someone with a disability, the inevitable question arises now and again: how does it (in my case muscular dystrophy) affect you?
There’s no easy answer to this question, particularly since it’s a progressive condition, meaning that symptoms worsen over time. Furthermore, there are many different types of muscular dystrophy, all of which vary considerably. As in life, no two people are ever the same.
To give you some insight I have decided to offer regular snippets of my experience with Ullrich congenital muscular dystrophy.
I had considered writing a detailed piece about the everyday challenges I face and how I have adapted over the years. But in the end I felt that might be a little, well, boring for you guys. Plus, this open diary (if you will), can be ongoing, allowing those who are interested to see how my condition continues to develop.
Perhaps this will help others, particularly those younger than I as well as parents of children with muscular dystrophy. Perhaps…
For the first week I will upload daily to give you an idea of where I’m going with this! Thereafter, I’ll upload once a week.
So, here is the first entry…
I miss… snuggling up in bed without having to wear a mask to breathe. As anyone out there who relies on NIV will know, it’s an incredibly difficult thing to adapt to. The mask is (for me anyway) extremely uncomfortable and needs regular adjusting throughout the night to avoid sores and the escape of air. I have always struggled to get to sleep without the addition of a mask tightly strapped to my face. It is of course something I wish I didn’t have to endure but, it serves its purpose. Quite literally – adapt or die!
I’m thankful… I can still breathe well enough to manage without daytime NIV (non invasive ventilation). I sincerely hope I never come to rely on my BiPAP machine for daytime support as well as nocturnal ventilation. However, I’m realistic and so am aware this could happen in the future. Therefore, I try my best to make the most of my days as they are – mask free. As cliché as it sounds, your life really can change in a day. So make every day count!