MS: eloquent silence of the weird and wonderful

So, how is your life shaping out to be now that everyone has forgotten about the past two COVID-infested years and restrictions? Or, are you finally back to worrying about other things like Will Slaps and on a more serious, sad note, the war in Ukraine?

I can say “something like that, yeah” to all the above with a reasonable amount of certitude. On the other hand, life is still kinda like… ‘WTF is happening in the world?!’

I often joke that MS is the person I never thought I’d meet. Sure, I had heard of MS before my diagnosis, and like everyone else, thought it was a disease that affected the muscles only, not the central nervous system. Other than that, MS was as far removed from my mind as it could, as I refused to do a deep dive into google before I voluntary stepped into A&E one freezing morning in February.

I had enough of my old physician misdiagnosing what I knew intuitively was not a 5-month bad ear infection, being overworked and mentally and physically exhausted.

Having excruciating, piercing stabs of pain in my eyes and ears each time I sat next to a cold window on the train, felt wind on my face, or when I talked, laughed, or kissed, that was not how a face should conduct itself. And these were just a few triggers, as I truly felt cursed just two years after moving to Ireland.

At first, I began to view MS and trigeminal neuralgia as an illness so nonsensical and derogatory in nature because it enters your life slowly and then announces itself with a loud bang. Also, MS is one of the most confusing and least understood illnesses in the medical encyclopedia for the mere fact that it keeps moving the goal posts in the lives of every single person with MS.

Just imagine this…

Neurodegenerative illness: gets worse over time

4 different types of MS

50+ associated neurological symptoms

2,4 million people with MS around the world

Some people have more or less symptoms than others

Some with less symptoms are worse or not than some with more symptoms

MS = your own personal, neurological monopolisation of the weird and funny

In short, what you’ve been handed is a brain and spinal cord that refuses to build any sort of consensus with any or every part of your body, and vice versa. Consider it a Democratic v Republican MMA fight of sorts.

People keep saying you look well, while inside your nervous system causes you to speak as if you’re drunk even though you never drink alcohol; it shrinks your memory and your brain; it can reduce your energy from 60% to 2% in less than two minutes; and need I go on?

The 50+ symptom list is depressingly endless, and it runs the rest of your CNS as a 1986 Chernobyl nuclear power plant hellbent on causing enough pain and hardship not just yourself, but the rest of your family as well.

In 2022’s modern lingo, your body is screaming for an immediate lockdown, or at least, an MS-shutdown mode. You can even add a Will Smith facial slap to it.

So, you get it. It’s all just a bit funky, really, when MS botches your bloc party every single damn day. Nevertheless, despite its utter unpredictability, life with multiple sclerosis is doable, just keep in mind that it is never a succinct tale of here today, gone tomorrow. It’s like an overused, old affair you can’t escape from, no matter how hard you try to ditch the thing.

For all the ways MS is in your life, it is an illness that you can adapt to. My neurologist said on the day of my diagnosis, ‘You will need to adapt your lifestyle, and you will have to educate people in your environment about MS.’

I went, ‘I need to do what?! I only just changed my lifestyle a few years ago when I moved to Ireland, and now you’re telling me I need to do so again?’

My dear neurologist, however, was 100% right.

What to do, so?

You guessed it.

What you need is an exit plan for when your job becomes too hard a job to keep going, no matter how old you are.

There is life after leaving the workforce. I did 4,5 years after my diagnosis. Sure, it was a huge decision to leave my job, but MS made that decision for me after it had been poking me for 1,5 years telling me I should quit. Had I not, I remain convinced I’d be in a wheelchair by now.

If everything never changed there would be no butterflies.

Like so many of those diagnosed with MS, you learn early on that curing is different than healing. The first is an epic quest sponsored by the theoretical knowledge and hands of your medical team. The latter, healing, is partially up to you because you are still dealing with an incurable, progressive illness over which you have little control. It’s not like, let’s say, PTSD where you can unlearn the negative thinking caused by a traumatic experience. In a physical illness like MS, one day you found out you have blisters on your brain and have absolutely no idea how they got there. After all, you didn’t put your central nervous system in the microwave or oven, right?

You just can’t unblister/deblister your brain and spinal cord (forgive the grammar, it shows how idiotic some illnesses are).

Still, how we get through life with MS is up to us. Symptoms not always caused by an event where decisions are made from the top, and tasks are delegated downward. Some days, it’s just a bubble-up party of symptoms, sending red flags for what should be very colourful fireworks, indeed.

Case in point: all the different ways that cause trigeminal neuralgia. Wind on your face. Loud sounds. Brushing your teeth. Laughing. Kissing.

The list is endless and therefore, grandiose in nature.

In short, what you do get is lots of moronic insouciance without guidelines that tell you how to inform your family, friends and colleagues you need to cancel whatever you had planned together. Some days it makes you feel rather Machiavellian because changing things at the last minute makes you feel quite unreliable and afraid of losing their trust, despite the more than valid reasons MS symptoms are giving you.

MS on the other hand does have a Machiavellian-inspired way of being. When in need, it begins a hedonistic, unilateral invasion of the trigeminal nerves. Pain and other symptoms are an occupational hazard, but if it wins, you must shelf that day under “been there, done that, time for bed.” There’s always tomorrow.

The morale of the story is: MS is doable; workable; liveable. To reach that status, you must listen to what it tells you. If not, the drastic decision making could happen sooner rather than later.

I was 36,5 when I retired.

That 0.5 is still that important because I still think I could have listened more, done more to ward off severe symptoms, and early retirement.

So, listen to your body. Symptoms are a sign something is not quite right.

And on that note, it truly is time for bed! After all, every day is National Napping Day in my neck of the woods.

2018 Winner Best Blog Post with ‘3443 Needles’, Blog Awards Ireland, Ashville Media Group, Dublin, Ireland
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◾ MyTherapy: Best MS Blog for Simplicity 2018
◾ Blog Awards Ireland: Finalist 2017, 2015, 2014; Winner Best Blog Post 2018 (Awards competition discontinued from 2019 onwards)

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