An April Fools’ Joke that Wasn’t Very Funny

“I can’t move my head,” I thought. 

It was 5 a.m. on April 1, and the realization of my full bladder prompted my wakening. But I soon realized I had a more significant issue that only became apparent when I tried to get up and couldn’t. What on earth is this? 

“I can’t move my head.” I panicked silently in my thoughts. My oblivious husband lying next to me grunted in his sleep.

I tried to turn my head to the left and then to the right. It was extremely stiff and sent pain flashing down my spine and left shoulder. 

I sighed. Not again. 

During my first MS relapse seven years ago, which turned out to be my first taste of multiple sclerosis, I woke up with my left side unable to function. Naturally, I panicked that this new situation would be another relapse.

That’s what we do when we have MS. Any new symptom automatically turns us into Sherlock Holmes hunting for clues. Or is it just me who examines what each new feeling is or which parts I can move? 

Thinking back to when I was diagnosed, I had become obsessed at the time with new sensations I thought were symptoms. That was understandable, because the doctor who diagnosed me told me to go home and Google MS on my own time to find out what it is, as remarkable as that sounds. 

Reading online about the various symptoms that people had didn’t help me. I didn’t understand that everyone’s MS is different, and I thought I’d get all of the symptoms I had read about. I thought MS was like a cold, with standard symptoms across the board. How wrong I was. 

I used to start every morning with a checklist in my head. “OK, what can I feel working and what can I move? Feet? Yep. Legs? Yep. Arms? Yep. OK, cool, we’re all present and correct.”

It turns out that I’m not alone in this, either. When I interviewed George Pepper, CEO of the British nonprofit Shift.ms, on my podcast “DISabled to ENabled” back in February, he said he had done the same thing after his diagnosis. Phew, I wasn’t going insane. 

It was indeed a new experience to lack control of my own body. We always assume we have control of our own bodies, right? Especially at 22, an age at which I thought I was invincible. I’m sure we’ve all realized at some point that actually, our bodies have the power to do whatever they want.

“I can’t move my head.” 

I’m proud to say that I’ve not had a relapse in the seven years since my diagnosis. I’m not sure if that is because I’ve started to take better care of myself physically and mentally, whether it’s just luck, or whether the medication Tecfidera (dimethyl fumarate) is doing its job. I choose to believe the first reason, that I’m taking care of myself. Either way, I’ve almost forgotten the initial signs I had at the start of my relapse years ago. 

When I was diagnosed, a strange thing happened to my right hand. It went through stages in which I could feel it, and then it would become weak, numb, and unusable in seconds. That would last about an hour, and then my hand would return to normal as if nothing had happened. This happened for about two weeks. I remember having a weird feeling just before my hand went numb. I can’t quite describe what it was, I just knew I was about to lose feeling. 

“I can’t move my head.”

Back to the other morning, when I had to get up to go to the bathroom. With a hand behind my head and one under my neck, I managed to peel myself off the pillow and sit up. Pain instantly soared through my neck, down my spine, and across my shoulder. In an upright position, I tried to move my head, with my hands on either side like a panic sandwich. It moved slightly, sending more painful surges. I managed to drag myself to the bathroom and got back into bed, while trying to keep my head in one place.

When I got up again, I consulted Doctor Google. It turns out that I had sprained my neck in my sleep. How the heck did I do that? Coincidentally, it happened on April Fools’ Day. Well done, body, you got me! Very funny. 

As I write this two days later, my neck seems to be all right. 

What are some of your experiences with MS relapses? Please share your thoughts in the comments below. 

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