Trust to hope
Many symptoms of MS are annoying. Numbness in the fingers, spasticity in the legs, the occasional bladder spasm that threatens to cause a small localised flood. Such symptoms are challenging to manage, but like a crying baby on a flight, ultimately you recognise that crying is what babies do, that it’s not their fault, and it’s something we can learn to live with.
But some symptoms are much more difficult to live alongside. When the baby on the flight is stabbing you in the thigh with a 6-inch switchblade you can’t just turn up your headphones and try to sleep through it.
Nerve pain is for sure the worst of these symptoms. When this one is in the room it’s the centre of attention. Lancing shards of pain that run down one side of your body and through your core are impossible to ignore. I remember once travelling back with friends from watching a Dota tournament in Birmingham and finding it difficult to fully concentrate on driving while a neurological infant stabbed me repeatedly in the right arm and leg. Little monster.
When, after a full year, the nerve pain finally abated, I found the experience strangely unsettling. I felt a premonitory anxiety, as though the pain might return at any moment. I couldn’t rest for fear the pain might just be waiting for me to lower my guard to leap at me anew.
But it never did.
Blindness is for sure a close second in the godawful symptom olympics. I’ve had optic neuritis in both eyes at different moments and the scans all show my retinas are so thin as to be translucent. Opticians looking through a scope into my eye can see my brainstem waving back at them. That’s a joke of course, my brainstem flips them the bird, she’s a real badass.
Mercifully my optic neuritis has left me with functional vision in the left eye. The right eye is more there for aesthetics at this point. I have wondered whether an eyepatch like Margo from The Magicians wouldn’t look pretty incredible, but my peripheral vision in that eye remains intact and I still want to be able to catch apples thrown at me from my right side… which happens more often than you’d think, I love apples.
Insomnia has to get the bronze. Lying in bed and feeling both bone tired and profoundly awake is a special kind of torment. Needing to get up to enact the ‘insomnia management plan’ is itself pretty upsetting, and knowing you’re awake experiencing the glacial pace of nighttime while everyone else is in hypersleep is not as fun as it sounds… and it doesn’t sound much fun. At least Chris Pratt had Jennifer Lawrence to keep him company in Passengers.
I only have a plush highland cow. Her name is Maisy.
But recently my insomnia has been improving. I used to experience it many times every week. Now I’m experiencing it only once every month or so. The problem is that now I’m waiting for it to return in full force and again I find myself guarding the gates of my own psychology, fully expecting insomnia to crash through them the moment I look away.
What’s symptom #4 you ask? The first runner up? It’s the neurogenic bladder. I was on my workout this week after a challenging day of work. I don’t tend to work out in the afternoons because the bladder is harder to predict. When I wake up and catheterise for the first time I generally buy myself 2-3 hours without needing to pee again, but afternoons are more of a dice roll. Early in the workout I was rolling through a nearby park when my bladder alerted me to its status. It quickly switched from ‘empty’ to ‘it’s complicated’ but I knew there was an accessible toilet in town that I’d breeze right past. I wasn’t in any immediate danger. I had time.
I did not have time.
I wet myself somewhere around mile 3. I noticed an odd sensation but didn’t know what it was until I reached the public toilet to find myself and the chair heartbreakingly warm and wet. I pushed and walked the chair home. A walk and roll of shame.
Symptom #5?? Wow you don’t give up, huh? Mobility has to be the honourable mention. I’m good most of the time but when I’m hot or especially when a fever hits I walk like an adventurously bipedal stoat. Lifting my legs becomes less of a command and more of an enthusiastic hope, like offering prayers to Norse gods for the chance of rain. My flat is too small even for the sleekness of the Rocinante so when I’m feverish I’m forced to move from room to room like a toddler attempting American Ninja Warrior.
The challenge I face is that these right now are the good times. I’m not in pain, I’m not fatigued, I can work out regularly, my mobility is strong enough to cook and clean, and generally I’m sleeping well (last night notwithstanding). I know that I’m only an infection away from danger, only a relapse from disaster, and only a conversion to secondary progressive MS from entering a whole new phase of this disease. I’m waiting for my immune system to recover enough to continue Ocrevus and while we wait I feel particularly vulnerable. The monster prowls at my shields somewhere in the distance, watching them wane.
But I must remember to value the moment. Right now I am engaged in full battle with this thing. I pushed the Rocinante for 8k today, headlined a digital festival Friday, and I’m bolder and braver in adventures with friends. I’m doing things that just a few years ago I’d have thought impossible. This disease forsakes all hope. But if there is one thing I have learned in these past few years it’s this…