Its the little things
Do people really know what it is like to have a progressive physical disability?
What took a couple of seconds now takes me a couple of minutes or more.
People see me around town
I’m always cheerful and positive when people see me in town or at networking meetings. It’s what goes on behind the front door that very few people see or comprehend.
The effects of MS
Trying to do the little jobs takes me so much longer. I have to get dressed sitting down. When I take off a pullover I have to be sitting down otherwise I’m a heap on the floor
Monkey on my shoulder
In the house it does not take much to ruin my composure. Accidentally dropping a cup on to the floor, losing my balance and falling over when trying to sweep the floor. Such stupid little things. Its the MS, always there reminding me of its presence.
There was a time when I could pop down to Waitrose, mow the lawn or take the dogs for a walk. I never gave it a moment’s thought but gradually things changed. Nowadays I have to ask myself questions. Is the rollator to hand? Is there a walking stick with it?. If I’m going out have I got some catheters? It’s new clutter and it has now become a part of my life. Spontaneity has gone out of the window.
The feeling of frustration
Now my walking is very slow and unsteady. When I change direction I must stop and check my balance. Walking and talking, that’s history. At least my back is straight not stooped as if I was an old man. Writing out a shopping list. Finding a pen and pad take up precious energy. OK now it’s time to try and write something down before I forget what it was. Despite intense concentration my writing looks like a child’s scrawl. Sometimes I struggle to read it. Appointments in my diary look as if they are written in a strange code.
The problems with MS are always changing, usually for the worse. Life is definitely on the crappy side of normal. The career income has gone, still got a mortgage to pay, The priorities in life have changed, my abilities have been severely diminished.
What will life be like this time next year?
Do I really want to know? I seem to lurch along quite happily. Yes, I know, there will be more things that will take me longer to do. So far I have not suffered any serious physical damage but I feel powerless. Sometimes I do get very cross but I have learnt; it has to be bottled and forgotten about. Its just one of those little things you have to accept.