When MS Has Me Going to Bed in Fear

I’m well past the age when the dark frightens me. Like any child I had my own demons that lurked in corners and closets as I willed myself to sleep. My personal bogeyman was the vampire Janos Skorzeny, played by Barry Atwater in the 1972 TV movie The Night Stalker.

WHAT was my father thinking when he let me stay up late to watch that with him?!

While most of us are beyond the stage of fearing things that go bump in the night (at least most of the time), the night does hold reason for fear for those of us with multiple sclerosis (MS).

Odd Sensations Give Rise to a Sense of Dread

During a recent stretch of unusually fine weather here in our little corner of Ireland, I sat on the sofa reading with our new puppy, Arie, tucked into me like I was into my book.

It had been a warm day and perhaps I’d taken advantage of it a little too much for my own good. I began to feel odd sensations in my lower back and down the backs of my legs. Odd but not new.

It was almost a lower-body version of Lhermitte’s sign (also known as Lhermitte’s phenomenon). But rather than having electric shocks shooting down my neck and spine, the shocks were shooting from my lumbar spine down the backs of my legs.

No matter where I positioned my lower limbs, the spasms and jolts of paroxysmal pain continued, and I started to worry about the night to come — and even more so about the following morning.

Sometimes MS Symptoms Worsen Overnight

Though I am beyond what the medicos call the relapsing phase of the disease, I do still have episodes of worsening now and again. In my current downturns — similar to those old relapses — I often notice their fullest effect in the morning, usually after a coma-like sleep. I know I’m not alone in this experience.

As symptoms progress in an exacerbation, they often come on and worsen slowly. We might not even really notice that much — at first. Close your eyes and your brain for 6 to 10 hours, however, and the progression has literally happened overnight.

So when I notice something that feels new or even just a little bit worse toward the end of my day, I find trepidation creeping in as I brush my teeth and prepare for bed.

I Prepared Carefully for a Potentially Bad Morning

This recent time, in learned preparation, I brought my walking stick into the bedroom, and Caryn, my wife, suggested that I also have a forearm crutch, just in case.

I’d obviously brought Caryn into the conversation I was having with myself once I could no longer concentrate on my book. We talked about what I was feeling, what might have brought it on, and my concerns about the dark hours ahead.

We did all the right things. But as we know, MS doesn’t play by the same rules of politeness and etiquette as the rest of us. It is a thief who will slip into the best-laid plans and steal what we think we’ve hidden well.

It was a small blessing that I was extremely fatigued by the time I pulled up the duvet, and sleep came mercifully fast.

This Time, I Recovered Quickly

When I woke, my legs were indeed shakier than the night before, and I was less stable on them. A few hours (and a couple of coffees) later, however, I was back to where I was the night before, and after a cool shower, I was better even than that.

Nothing I did made the MS bogey monster stay away that night — though I wish it had, so I could share my newfound silver bullet (or wooden stake in the case of my childhood bogey).

That’s just the way MS works. Sometimes it stays in the shadows. Sometimes it jumps out from its hiding place and takes another precious ability away. On this night, however, it just made for fearful childhood dreams.

Wishing you and your family the best of health.

Cheers,

Trevis