I have rewritten the first sentence of this post a dozen times. I want to explain my MS. My version of multiple sclerosis. And much like the shifting, unpredictable and evasive symptoms that I experience, so too are the words I want to use to describe it.
When I was diagnosed my symptoms were quite apparent and frightening. Tremendous fatigue, stabbing pains, mood changes, slurred speech, double vision, balance issues, drop foot and a group of symptoms that I will call ‘delayed response’. Delayed responses were times when my brain would tell my body to do something and a 1-5 second delay would occur before the function. My hand would pause while writing a word, my foot pause mid-stride…or mid-brake. I quit driving for a few months.
Within a year most of the more obvious symptoms had gone away or diminished to the point that they were not visible to others. With a good diet, the right medications and supplements, and a great big dose of good luck I have managed to stay fairly stable for 9 years. I still have ‘invisible’ symptoms; fatigue, muscle spasms, nerve pain and heat sensitivity to name a few. I see them, my family and friends see some of them, but to the general public I probably appear fine.
Unfortunately some of those ‘delayed responses’ have returned and some of my other symptoms may be increasing. It is happening slowly, at a rate that is easy for something to become my new norm. The lines between aging, busy life and MS are not lines at all. All of it is my life, all of it is me. I am not Judy with MS. I am Just Only Judy.
I take a lot of naps. 20 minutes in my car during my lunch break. 30 minutes after work, to make it through the evening. Every Saturday and Sunday…trying to catch up. This is normal for me. I cover my eyes for naps and sleep; the smallest bit of light bothers me. I struggle with noise. The noise of too many voices, music, televisions, even the hum of the refrigerator on a bad night is like rubbing alcohol on the raw wound of my nervous system. I avoid crowds and plan my activities around temperature and bathroom access. I write everything down, leave myself voicemails and send myself emails. I forget much and yet I move along, compensating. All is normal.
Until something is not. For the last two months I have been complaining that my computer mouse ‘does not double-click’. I use my mouse with my left-hand to reduce nerve pain in my right arm. This is normal. My ‘double-click’ was not working. This was not normal. I have been doing a single right click and choosing ‘select’ or ‘open’. It’s tedious and not everything works this way.
The 20th time that I said “My double-click is not working”, one of the men in my house said, “What do you mean? Let me see.” They took the mouse in their hand and double-clicked. It worked. I said, “Oh, it must be working now.” And as they walked away I double-clicked. Nothing. A few days passed and someone bought me a new mouse. I tried it today; the double-click didn’t work. For two months I believed my mouse was broken. Something else ‘clicked’ tonight, as I tried the mouse again and again. That is the realization that it is not the mouse that is broken. It is another little bit of me. My hand is not able to double click fast enough. I tried my right hand, it’s even worse.
I knew I had an issue with my feet not working fast enough when I tried to take a Zumba class last year. For some reason I was always three steps, shimmies or shakes behind everyone else. Heaven help us all when I was supposed to ‘turn, turn, turn’ (read “Haven’t you any sense?”). This summer I noticed something strange about my handwriting. Every so often a large gap of open space appears in the middle of a word. As though I am expecting some extra letters to pop in for a game of scrabble. It looks like th is. I saved some samples, but forgot to take them to the neurologist.
For some reason, of all these things, it is the ‘double-click’ that is upsetting me. I can’t put my finger on it. Yes, that’s a bad pun. It has something to do with my absolute belief that the mouse was broken. I don’t want to be broken.
I am told that the ‘double-click’ speed can be adjusted. So with a little help, I will compensate again. I’ll carry on. All will be normal. And normal is a rolling, shifting sea that tosses and turns me until I am dizzy. Spits me out on the beach long enough to catch my breath, to try to find words. Then the tide pulls me back in. Normal.