I miss… not having to worry about catching every virus circulating throughout society.
Our school days are spent often in damp, stuffy classrooms surrounded by snotty, sniffly kids. Coughs and colds are unavoidable.
When I was at school no one bothered with antibacterial hand gels or antiseptic wipes to contain infection. This was back in the days when disposable tissues weren’t commonplace. I remember my dad sending me off with a handkerchief shoved up the sleeve of my school jumper. How hygienic!
But I never worried. Obviously no one wants to get ill unnecessarily. But back then, if I did catch the latest cold I’d struggle for a week, taking time off school (silver lining!), and after a course of banana medicine (who remembers?) I’d be fine again.
I won’t lie, I did suffer a few bouts of pneumonia throughout my childhood, for which I required hospital admittance. But again, back then there were no complications. I got ill, I sought treatment, and I recovered without much concern.
These days, the struggle is much greater. As my condition deteriorates, the ability to fight even the most trivial of respiratory infections becomes much more difficult. Treatment is much less straightforward and not without complications. Recovery time seems to extend with every illness. Hospital stays are much longer and far more stressful not only for me, but also my family and the doctors who try to fathom how best to care for me.
I now take every precaution possible to avoid contracting viruses. A slight sniffle for the average Joe can quickly develop into something very serious for me. For those of us with muscular dystrophy, a cold is never JUST a cold.
I’m thankful… for my family.
I’ve said this before but I really am incredibly fortunate to have the family I do. There’s only a few of us – I have no aunts, uncles or cousins. But we are a close, loving and supportive unit.
It may seem harsh to say, but friends, especially those from childhood whom I don’t see too often – people grow up and move on – don’t really understand how my muscular dystrophy affects me. They see me on a good day and assume that’s how I am all the time. Unlike my family, they don’t witness me at my worst, nor do they see the progression.
Don’t get me wrong, I appreciate all my friends. It is by no means through ignorance that they can’t comprehend just how fragile my body and health is. I just think that unless you live with it yourself, or with someone like myself, you can’t fully grasp the situation.
Unfortunately muscular dystrophy is not a widely recognised condition. If you approach someone at random, they’re unlikely to have even heard of it. Neuromuscular consultants and specialists have limited knowledge, particularly of lesser known forms such as Ullrich, which is what I have. So sadly, we have a long way to go in raising awareness within society.
It is for this reason, that I feel so secure in the knowledge that my family are always here to support and care for me, no matter what. No one understands the struggle, the fight, the fear like my family. And I do include medical professionals in that statement! In my experience, doctors don’t always know best. When the shit hits the fan, I know I can rely on family to do what is best for me. I do not take this for granted.