A friend of mine, who is going through a hard time, told me that she doesn’t know how I deal so well with my MS and how I manage to just get on with life. She compared how she is coping to how I (appear to) cope and came to the entirely incorrect conclusion that she must be doing something wrong.
Now, I’m well aware of my talent for hiding how I really feel. It’s a talent that many MSers possess and one that enables us to keep going – the alternative is to wallow in misery, and no one wants that. But on reflection, I realise that I probably put on too much of a front, and this can be harmful to people like my friend, who think it’s not OK to be sad.
The truth is, behind closed doors, I’m not coping. I am angry and frustrated at my body every second of every day. I am still grieving the loss of my old self, the one who could run and jump and WALK. I’m desperately sad that I can’t do more for my kids and that I can’t do simple things like walk them to school. I hate having to constantly monitor my bladder and having to clean up when I wet myself. I hate the fact that I’m always tired.
I hate having MS.
I hate it, I hate it, I hate it!
Whew, that felt good.
So why am I writing all this? Certainly not to garner sympathy. Rather, I think it’s important, once in a while, to acknowledge that having MS is hard.
A recent example of my not coping occurred in the summer holidays. My kids had trashed the house, there were toys everywhere and the living room had been turned into Jurassic World, with an erupting volcano and toy dinosaurs covering every inch of carpet. Usually, I’d be proud that my love of dinosaurs has rubbed off, but on this day, I was struggling. I had just unloaded the washing machine and was contemplating hanging it on the line, but my legs would not cooperate. Abandoning the washing, I staggered into the living room in search of a seat, but I couldn’t physically lift my feet high enough to step over the dinosaurs. I ended up tripping over them, my legs crumbling under the effort, and I fell, landing painfully on a carnotaurus’ tail. I couldn’t get up; my legs had turned into solid heavy lumps, and I was stuck.
Perhaps, on a different day, I would have laughed at the situation. But on this day, all I could do was cry. Loudly.