Sitting on my kitchen floor at 4am
I’m sitting on the kitchen floor, my back against the cupboard. A lemsip is sitting within reach, spilled water dripping from the counter tapping onto the dark linoleum. I pull my legs up by hand to lean on my now useless knees. I reach to take the lemsip off the counter, check the time. 4am. Rain begins outside tumbling through the leaves of sleeping trees. I take a sip. How did it come to this.
MS, at the core, is a demyelinating disease. The insulation that preserves the electrical signals that form the heart of every deliberate, and many automatic, actions the body takes is damaged. But nerves find a way to communicate even with such damage to the myelin sheath. They create new sodium channels to better communicate the electrical signal and to even communicate chemically where that signal otherwise fails. But these sodium channels also leach potassium ions, and when they leach too many the delicate balance of the nerve is thrown off and it can’t polarise ready to send received signals at all.
There are two things that cause potassium ions to leach out. The first is use. Trains of impulses that push the sodium channels to open more frequently leaches these precious ions. So while a person with MS might be able to walk for the first mile, the cost is the potassium ions and the consequence is the inability to use those nerves for a while after, until rest restores balance to the nerve.
The second is heat. Increased body heat of as little as 0.5 degrees centigrade is enough to increase the fluidity of the cell membrane, to make the sodium channels open and close inefficiently, and to create opportunity to lose more potassium ions much faster. This is known as Uthoff’s phenomenon, and this is what has led me to my kitchen floor at 4am.
Despite my rigid infection management rules and methods, despite my ffp3 masks that I wear whenever in public in close quarters for any length of time, despite my hands being raw and itchy from over washing…
COVID-19 still found me.
On Saturday night I had a scratchy throat, and that progressed to a fever overnight. At 3am I awoke needing the toilet. I stood and found myself walking like a toddler new to the art. I stumbled through the corridor, found my way to the bathroom, and by the time I sat down I was already wet. My hands were number even than usual and I couldn’t manipulate the catheters, I blew through two missing their target and nearly dropped the third.
By the time I got back to the bedroom the problem had become clearer. I needed to bring down my fever. But my legs were nearly spent; the day before I could have walked a mile without too much difficulty, but now I could barely get down the corridor. I knew I needed paracetamol, fast delivered, a lemsip would be my best bet.
Caz is away at her sister's. I'm alone.
I worked my way back to the kitchen, barely standing. I grab a sachet from the bathroom and by the time I’m boiling the kettle I can no longer stand. I use my arms to hold myself upright, climbing more than walking from the kettle to the sink. I pour, water covering the counter as much as the mug. As I try to get some cold water into the mug to cool things to an immediately drinkable temperature my legs fail completely and I lower to the floor. I’ve just enough time to move the mug to a place on the counter I can reach and I descend slowly to the cold lanoleum.
I rest my back against the cupboard, with more force than intended, my legs and trunk can no longer stabilise my frame. I pull my knees up to rest on them, taking the lemsip from the wet counter, and I rest back listening to the water drip and the rain tumble. Sleep is far from my mind. I know I’ll need to stay here until my legs recover and the fever comes down a little. I put my headphones on, grateful I always have them around my neck in case of trouble, and I put on music softly.
My Covid adventure would continue. Several calls, an antiviral, the consequences for whether I can continue with Ocrevus given the effect Covid will have on my lymphocytes. The risk of relapse, always familiar. I shrug. I don’t get to choose what happens next.
While I sit there I think of my enemy, stalking me again in the shadows, the injuries it has left upon me from our previous encounters. I think of the pain, the insomnia, the fatigue, the nystagmus and the numbness and the incontinence and the weakness. And the fear. Knowing this creature is not done with me and knowing that winning this battle is less a question of fighting and more a question of living while the battle rages.
Today, though, I won a big victory. Today I managed my fever from my kitchen floor.
I finish my lemsip and steal a glance at my invisible opponent, somewhere out there in the shadows and the rain. I can almost hear the rumble of its breath.