There was no time to get used to weak lips and tired jaws before MG moved on to the next target.
My right hand.
I was using a computer. Typing, operating the mouse. I’m right handed. It seemed to happen quite abruptly. My hand wouldn’t quite grip the mouse. I lifted my hand up and looked at it. I started typing again and realised my pinkie and ring fingers wouldn’t move. They were paralysed.
It was the oddest sensation. When you think of something being paralysed, you imagine it’s without feeling, right? I had sensation. But couldn’t move my fingers.
I gazed at my hand in dread. After being told by the neurophysiologist that he’d detected weakness in my right hand and arm, I wondered when it would emerge. I hoped this was going to be just a momentary blip.
At home later that evening, I was in the kitchen cooking. I loved cooking. Nutrition fascinated me and I disliked processed food. I often experimented with new recipes and interesting, untried vegetables. I supposed my preoccupation with food came from having been anorexic for twenty years. Except now I ate food as well as cooked it! I could often be found in the kitchen on a Sunday having a ‘cook-off with myself’.
On this occasion I struggled to use a knife. I had cut myself quite badly a couple of months earlier. I’m not usually clumsy, so although unusual I hadn’t realised at the time that it was probably due to weakness in my hand. Now I didn’t want to take the risk so called my husband in to do the dangerous work. I also hesitated to lift pots on and off the cooker, and definitely didn’t want to attempt to take hot dishes from the oven. Another memory popped into my head of inexplicably dropping a tray of hot food onto the floor as I was taking it out of the oven. This had happened shortly before I’d gouged my hand with a knife, but hadn’t struck me as being significant at the time.
While husband was peeling and chopping, I made dumplings. As I was rolling the mixture into balls, my hand rapidly became useless. It was impossible to move most of my fingers by the time I finished.
The severity of the onset of this new symptom seemed acute. Maybe because I used my hands, especially the right one, all the time. I found it difficult to use cutlery afterwards, which made eating a challenge.
This continued for a few days, with the edge of my hand and outer fingers becoming more useless the later in the day it was. More tasks became difficult. The simplest things were problematic. Getting socks on or off. Washing myself. Brushing my teeth. I couldn’t even depress the button of my spray deodorant after my evening bath. Some things were easily adapted, switching to roll-on deoderant helped, for instance. But I discovered new difficulties every day for a while after this.
And I kept forgetting. Most mornings when I woke up, it was like someone hit the reset button. Just as it took me weeks to realise the double vision and dizziness hadn’t miraculously disappeared overnight, my hand seemed functional in the mornings. I quickly learned that it was safer to carry a hot drink with both hands wrapped around the cup. The weakness would strike suddenly and without warning. There were other things that were just too risky to even try, I decided. When I saw a friend with her baby, I declined her offer of holding him;
I might drop him. Literally! I have poor grip and not much strength in my arms. Little guy could just slip from my hands. I’ll have to settle for making gooey faces at him.
I had a very bad day, symptom wise, soon afterwards. By mid afternoon both my arms felt puny. I imagined this is what they might feel like if I had done a heavy weights session, swum a few lengths and then held my arms above my head for ten minutes. They felt so odd.
Like floppy, overcooked noodles.
It didn’t ease off. I went to bed that night following a more mammoth struggle than my new normal, giving up on brushing my teeth, simply unable to hold my arm up to do it. I couldn’t sleep right away. The way my arms felt repeatedly caught my attention. As I turned on my side, a spaghetti arm pathetically attempted to move the quilt as if it weighed much more than a bag of feathers.
When I woke in the morning my arms still felt very feeble.
This was the day when I could no longer ignore my limitations. There were so many things that were no longer safe for me to do. I didn’t have time to get used to one symptom and the effects of it before another, then another took over my body.
The question I’d been stifling since this began came fizzing to the surface and erupted from me;
Why me? WHY!? All the crappy things that have happened to me, and now this!
Immediately I concentrated on calming myself. I knew already that this level of emotion would be pumping antibodies into my bloodstream to make me weaker.
And the answer is on my lips… why not me.