Every relapse a lesson
This is my 102nd blog post on RollingForInitiative and to celebrate I thought we could take a look back at the road travelled together. I was diagnosed with MS 7 years ago. It has been quite the adventure.
The symptoms that first struck were fairly minor. I lost my sense of taste and some of the sensation in my face on one side, and I’d gone numb in one leg,
My first GP thought my symptoms were mostly indicative of anxiety. I don’t mean to judge my GP, he was caught perhaps by some unconscious biases to which we are all vulnerable, but from the outside I find it hard to understand how anxious you have to be to go numb in just the one leg for a fixed period of time. The diagnosis didn’t fit the symptoms to me in some fundamental ways.
I went for a second opinion and my new GP looked at me with a veiled concern. She sent me immediately to the neurologist. When the GP wrote to the neurologist she told him that I first discovered my numbness in my leg when I was in the shower shaving, which was true. She said that ‘Cora had not shaved in some time’.
Which was also true.
It made me laugh, disguising the seriousness of what was actually happening. Immediately after I was first diagnosed I was hit with my first proper relapse. My early flirtations with neurological damage looked scary at the time, but they were the teacups at the local amusement park. I was yet to learn what a real rollercoaster felt like.
2019 Relapse 1 - This is going to hurt
The relapse started like they all do, without fanfare or drama, just one day a new symptom appeared. I don’t even remember what I was looking at when it started. Something banal I’m sure, a menu at a restaurant, or a poster on a wall, or just staring hungrily at a cream cheese bagel I was likely to consume without chewing.
When without warning my eyes wandered off. They were looking forwards when suddenly, without any volition, they would look up and to the left somewhat, as though a rare bird had caught my attention. My eyes would then gradually reset, slinking back like a guilty puppy having peed on the carpet, slowly and with great remorse.
It was a strange thing to experience once, but moments later it happened again. Then it kept happening repeatedly, multiple times per second, for a full 90 minutes. And that cycle would return every few hours. Being unable to see straight is a problem, obviously. But it was nothing, barely a blip on the symptom radar, when nerve pain came into view.
Each beat of the eyes pulling off target was joined by an impulse of pain that ran down my right arm, through my core, and down my right leg. There were points on my arm and leg that felt like a pin was being driven into the skin. I have never felt a sensation like it, and hope to never again. The eyes pulsing off target resolved fairly quickly, within several weeks.
The pain did not.
The worst of the pain would wake me at 3am, and not abate until I got up and sat somewhere cool and waited. I’d take aspirin and paracetamol and ibuprofen knowing that none of them would touch this kind of pain but feeling that doing something was somehow better than doing nothing. Desperation is a hell of a motivator. I learned that the pain would be most severe for 27 minutes, so I’d watch something on TV to distract myself, put my phone on the couch, set a timer for 27 minutes, and use it as a form of reassurance that this would not last forever. The pain would be severe enough to make me panic that it might never end, that I did not know whether I could survive if this time it did not abate. At the worst it would wake me every other night.
The pain lasted a year.
Then one day in November it wasn’t as bad as I was expecting, and then over the following several weeks it shrank, became more intermittent, and disappeared.
Not a day goes by that I don’t thank the fates for this roll of their dice.
After the first major relapse we started Tecfidera, the neurologist quickly diagnosing me, having seen lesions in my brain and spinal cord numerous enough to start naming constellations.
We had hope.
2020 Relapse 2 - Hope becomes forsaken
The pain having remitted I was optimistic about the future. I was on Tecfidera, a medium efficacy drug, and I was battling the fatigue that would become a fixture of my life, but I was adapting. Then I felt numbness across my left flank. A weird band of missing sensation formed around my ribs, solely on the left side, and gradually spread downwards. I lost the sensation in my left leg.
The relapse was short lived and fairly minor, the numbness stopped spreading once it had reached my toes, and I could still feel my arm and hand, which I thought was a good sign. And then the relapse, after several weeks, receded. Tecfidera had failed, though. New lesions could be seen on my brain MRI. So we started Mavenclad, only available to folks with highly active MS. Not a good sign.
2021 Relapse 3 - Can you read the top line of letters? No, no, the board is over here.
There is one symptom that is nearly as scary as nerve pain. One day I found my right eye was painful, whenever I moved my eye to the limits of its movement, especially down and to the right. I’d experience a flash of light that filled that eye’s vision and pain that exploded through it.
Over days I started to lose the vision in my right eye, and within a couple of weeks I could no longer see clearly through it. A small spread of other strange symptoms told us that this was a pretty meaty relapse so we started steroids to bring it to a halt.
My friend is a GP and he asked me what dosage of prednisone I had taken, and I told him 500mg every day for 5 days, and he straight up thought I must be wrong because the maximum dose he has ever prescribed was 40. Steroids at this dosage don’t mess around, they make you feel like you could write a novel while on them. You feel like you could blast one out in a week. Like you don’t need sleep because this novel isn’t going to write itself. But then the crash afterwards makes you feel like every inch of your skin is bruised, and you read back the manuscript to find it was written in a language you no longer speak.
I went to see a neurophysiologist, where I spent hours lying on a bed watching flashing checkerboards on a screen with sensors stuck to my head. I was hooked up to an encephalograph looking for the speed of the signal through my optic nerve. It took hours because despite our best efforts we couldn’t detect a signal at all.
My vision in my right eye never recovered.
2021 Relapse 4 - You weren’t using that fine motor control, right?
The relapses started rolling as though there was no remission, but old symptoms would remit while new symptoms began. My eye never recovered, but every other symptom disappeared, until I started to go numb in my left leg again.
I’ve been numb a few times in that leg before, and a little numbness is just a Tuesday at this point, but over days the numbness spread up my left side, and down the leg, encompassing it fully. Over several days the numbness spread up my whole left side, up to my collarbone.
Then the toes on my right side started to go numb.
The numbness spread up my right leg at the same time as spreading down my left arm. I lost the dexterity in my left hand. I could move it, but I couldn’t hold a fork. The numbness spread up my right side and down my right arm until I was numb from the collarbone down across my whole body. The numbness reached my ear and stopped spreading. I mean unless it jumped to another person there wasn’t much further to go.
And then the numbness receded. My hands never fully recovered and now are always somewhat numb, though with a lot of practice I have regained nearly all of their function.
2022 Relapse 5 - Morpheus forgot my address
I had gastroenteritis. 6 weeks of recovery later and a new neurological symptom appeared. I lost the ability to fall asleep. We’d seen on the MRI a lesion in the Pons in the brainstem, and seeing a lesion there is like seeing a bear in your bathtub. That’s where you’re pretty vulnerable, and having a bear in there makes your daily routine a good deal more difficult than usual. Bears take ages to do their hair in the mirror. The brainstem is where the most important neurological functions take place, and the pons has the job of triggering sleep.
And mine had a bear in it.
I spent 3 months getting around 2 hours of sleep every night. The system was failing so badly that I’d not fall asleep until 7am and my days were a cognitive wasteland. I found research that highlighted MS patients as not producing enough melatonin, needed to initiate sleep. I reached out to my GP for help, and he dutifully prescribed it.
One of the things you start to notice is that healthcare professionals frequently don’t take you super seriously as a woman. Until you say ‘I have MS’, at which point people start to sit up and take greater notice, and will prescribe whatever you need generally.
After 6 months of insomnia the melatonin started to work, insomnia became more an intermittent problem, frequent enough to cause huge challenges, but infrequent enough that I could think.
The worst of the insomnia resolved after 6 months, but it took two years to get it fully under control. And it was while the insomnia was still significant that MS found me once again.
2023 Relapse 6 - o’ bladder where art thou
I had been trying to exercise more to manage the insomnia, walking every day and doing ‘couch to 5k’ regularly. One day on my regular 2-mile walk I found I couldn’t get all the way without stopping. I was dragging my legs behind me to a bench that sat about half way and would have to sit and wait for my legs to recover before I could continue. What was most concerning was that by the time I’d arrived at the bench my legs couldn’t hold me up and I’d frequently impact that bench with all the gentle control of a shuttle re-entering the atmosphere.
And then I lost the ability to empty my bladder. It remained fairly full at all times, periodically overflowing, and when I tried to empty barely a trickle would exit. I went to a urologist, who started me intermittently self-catheterising.
I bought my first wheelchair.
Then, my neurologist started to become really concerned. Mavenclad was a high efficacy drug, one of the big weapons we can wield in this fight and somehow it had catastrophically failed. He began talking about ‘last chances’. We started Ocrevus over three years ago.
I haven’t had a relapse since.
Each of these relapses has changed me in fundamental ways. They’ve made me more familiar with crisis, with profound uncertainty. They’ve made me pull friends close, cherish life, and thrive in the face of catastrophe.
Somehow I remember those relapses fondly. I know that makes no sense and I am under no illusion as to how abundantly traumatic they were. But somehow, we made it. Through the most intense pain and fear and insomnia, through numbness and weakness and incontinence, through losing the vision in one eye… we made it.
But this is the last month before my next dose of Ocrevus, and as we get further away from my last the MS monster is starting to growl again. It is prowling my shields, I know it. And I now can’t help but overinterpret every little symptom, every exacerbation, every slip of the tongue, every splutter as I inhale a little water accidentally, every stumble, every tingle, every cramp, every forgotten name, every dropped item. I can feel myself tense still, that vigilant part of myself with her hand on the hilt of her sword, ready to receive whatever Relapse 7 has to offer.
But we will not hide, we cannot flee, and if this monster finds us, then it will find us ready. Because the greatest lesson these relapses have tought me is this… we survived our last encounter with this monster…