Often the voice in my head says “I don’t have MS. I can see, I can make decisions, I can… just fine.” Does my denial explain my shock and horror when I realized that I’ve “lost” the colour lime-green?
This came to light when my family and I were keeping our eyes open to watch my father cycle up the cardiac hill portion of his bike-a-thon in July. When told to look for the bright green helmet, I was sent reeling with the shock that I couldn’t see the colour that others were describing. I saw an odd-looking yellow, perhaps with a hint of green, but definitely not bright green. I wanted to cry. I had been very mistaken in thinking that my vision was pretty much back to normal.
One would think that the daily Copaxone injections would be enough to keep my MS a reality, but I’ve been feeling so good that I’ve almost convinced myself that I don’t have it. “There must have been a mistake. They must have made a wrong diagnosis.” I’ll tick along quite well for a few days, then something will happen to jolt me back to reality and I’m again forced back to having to accept that MS is a part of my life.
Part of my life, but not defining it – my MS must remain just one part of me. As I continue to attempt to define this part of my life, I examine it. Itemize it. Try to keep track of it. We all find ourselves making lists of things. Whether it’s for groceries, things to do or planning holidays. My lists used to concern only the things being added to my life, like purchasing groceries and fun things to do with the boys. However, now I find that I want a broader picture of how MS affects me; to consider the disappearance or reduction in my MS symptoms. Here’s an inventory of my MS oddities/symptoms:
- shadows appearing in my peripheral vision and startling me. I think this is due to a blind spot returning when I’m really tired.
- difficulty seeing well enough at night to feel completely comfortable driving
- left arm will ache and I’ll drop things
- tip over for no apparent reason
- poor short-term memory
- struggle to find the right word during conversations or I’ll laugh inappropriately
- brain-addled “filing” at home. Really, did I need to hold onto grocery flyers from January?
- unable to see the colour lime-green
- noticed that the wooden portions of a wind chime we recently hung are painted. I truly thought they were unfinished, natural wood.
- complete exhaustion – I feel like I have more energy these days
- all the symptoms listed above, but with more energy than usual.
Many of these oddities or symptoms must seem trivial and irrelevant to the rest of the world, but they scare the bejeepers out of me. I find them especially terrifying because I’ll notice that in the past I’ve done something poorly when at that time I had thought that I’d done it well. How could I have been so stupid? On what nasty expedition is my brain taking me?
It is so horribly disconcerting to feel so good sometimes, then come across an example of my own lack of… lack of… lack of what? There I go again – I cannot find the right word. Ugh.
So, I keep coping as well as I can. My list of concerns to discuss with my doctors will continue to grow. I am acknowledging my shortcomings as they make themselves apparent and then I cut myself some slack and do my very best to carry on.