When life with MS is like The Clash’s ‘Should I stay or should I go’

Girl glass door hands

Am I alone in thinking we cannot possibly be halfway May already because you only just celebrated Christmas in 2018? According to the hoi polloi of the township called Ireland, I am still in denial that yes, we’re roughly in the midst of 2019, and no, we cannot possibly go back to January 1st.

The Irish climate sort of agrees with me for now.

Cooler temperatures than normal.

Rain.

Wind.

And yes, I am still determined to take that goddamn picture of me creating a snow angel in my garden.

Don’t ask.

Please.

Winter knows me awfully well, I can’t let go of cold weather systems that most choose to despise. It whispers and mocks me incessantly about being prepared for another summer of hotness as the weather on the emerald isle has outshone places like Barcelona or Ibiza by producing warmer temperatures in recent years. In a nutshell, I dread spring and I hate summer even more than painting my toenails, as most of the varnish ends up on my skin instead of anywhere near it’s expected to be.

Quick colourful, joyful fact:

Two weeks ago, a medical professional told me – for the first time in fifteen years, no less – that my toenails are a sterling illustration of what the more delicate things in life with MS are all about.

I kid you not.

Caravaggio and Picasso would envy my toes as it takes some ingenuity to paint inside anatomically defined edges when one faces intention tremors, also called cerebellar tremors or a lack of voluntary coordination of muscle movements.

In essence, my daintily designed feet undergo a brazen attack of nail polish, with their skin wearing more paint than its alpha-keratin at the end of my curly toes.

Again, I kid you not.

But all joking aside, I already yearn for that crisp feeling in the air once September or October have arrived. That autumn feeling where I can say, “Oh yeah, baby, I am alive again!”

More joking aside, despite the next few days looking more like autumn than spring, Uhthoff’s Phenomenon has become an annual occurrence even when it’s not on the calendar yet. Already I am figuring out how best to survive the next four or five months, not because I am the worrier-in-chief in my village–preferably pronounced as a warrior-in-chief but recognising what’s ahead takes lots of worrying off your shoulders. Having a chronic, neurodegenerative illness means that uncertainty in illness patterns demand certain anticipation, something I picked up after several near-misses that could have ended in a predicament I was not old enough yet to endure.

Now, you may think, “Ah, stop grumbling, it’ll merely be a few degrees warmer tomorrow, so get over it!”

Er… No.

If only it was that simple.

If MS were a song, it would be of the ‘Should I stay or should I go?’ variety by The Clash. It doesn’t know which way is which, and it just annoys the hell out of you just because it thinks it can.

SISOSIG = MS = BS.

So, is MS fickle? Most certainly. I would even call it frivolous and utterly demanding with no respect for you, its host. You may think you’re in command, but before you lie invisible obstacles that may trigger new symptoms or make old ones worse. Ten days ago, the emphasis on being prepared no matter what the circumstances, was once again pushed to the fore by my MS’s unwillingness to play fair.

My hearing on the side where my MS is most prevalent left the building but losing some sound wasn’t necessarily an eerie concept. Aside from having constant tinnitus, hearing issues have become more prominent over the 14,5 years of life with MS, i.e. hyperacusis and stabbing ear pain because of trigeminal neuralgia, when sudden loud sounds and other environmental sounds set off excruciating facial and eye pain. At first, I didn’t think it was something that needed to be dealt with sooner rather than later.

Then, while talking on the phone with a friend, I wondered where her voice went to. Throwing the phone from my left-to-right ear to see if it was either Samsung’s fault or mine, dropping the phone slapstick-style while at it, I raised the call volume until my other ear reached noise sensitivity hell.

This, dear friend, scared the living daylights out of me.

There was at least -50% less output in my left ear.

Family and friends were immediately alarmed, so the usual relapse questions were shouted:

“Did it last longer than 24 hours?!”

120 hours. And counting.

“Did you contact your MS nurse?!”

Santa Claus. I called Santa Claus.

And, “When is that emergency MRI scan?!”

In August. This is Ireland. Emergencies run slower than on the mainland.

Five days later, I contacted my MS nurse, as losing decibels continued and more pain management was booked. I underwent a hearing test four days later, and my hearing is slowly returning to normal, although not at 100% yet. Pinpointing the cause is still ongoing, perhaps a relapse, perhaps an infection, perhaps a tumour?

For those unaware of the mechanics of and what is or isn’t a new relapse (also called an exacerbation, episode, blip or attack), the following need to be considered:

Old symptoms have returned in a stronger format,

A new symptom appears,

When it lasts longer than 24 hours,

When symptoms have been stable for 30 days before the worsening of old symptoms or new ones emerge,

No alternative explanation for the symptoms.

The hearing loss didn’t show up on its own, though. For the past six weeks, my left ear has been feeling as if it’s composed of leather, or even rubber. I’ve been tilting the cartilage bits of my ear to elicit some brain activity, like a dog who just realised it has big Beagle-like ears but he/she tilted it backward, speculating where the hell that ear has moved to.

It also feels like the numbness in your lips, cheeks and chin when you visit the dentist and you advise people afterwards that now is the time to hit you in the face should they have reason to because you wouldn’t feel it, anyhow. It just feels as if your lips and chin are immense, yet they’re only moderately swollen.

In addition, something I find rather intriguing and worthy of further explanation, even the interior of my ear is numb. It sounds absurd yet perhaps normal when trigeminal neuralgia is capable of first using a reasonable amount of stabbing, shooting pain attacks, followed by days of dentist-like numbness in the left side of my face. During cleaning my left ear, I went, “Did that earbud travel all the way to my right ear because I felt nothing?!”

All fun and jokes.

All fun and jokes, I know.

As you can tell, the unpredictability of a neurodegenerative illness that boasts of having approximately 50+ different symptoms attached to it, is a very real thing, and one you only learn from after having gone through its motions. For all the jokes and memes, though, for all the pain medication and wise words, and for all the resting and enjoying life while you can, there is such a thing as “never say never.”

Never predictable.

Never straightforward symptoms.

Never a day that doesn’t confuse, rattle and worry those closest to you.

Thankfully though, there’s a silver lining that sometimes outshines that multi-coloured rainbow.

I thought certain hearing loss comes in handy right now. When trigeminal neuralgia reports for duty, it’s often via noise nuisance like an alarm system in shops, screeching children, doors being slammed shut etcetera. After all, hyperacusis, or heightened sensitivity to sounds that are not usually a problem for others like loud voices or phones ringing, has been plaguing me on more than one occasion this past year, something which almost made me yell politically incorrect profanity.

Unforeseeable events take place in everyone’s life, regardless of having a progressive neurological disease characterised by an unpredictable relevant disability risk. As a result, we each tailor our own agenda on how best to adapt should this risk materialise, and in my view, the final outcome is achieved by writing, for the story writes itself, as if I am just a mere spectator while paper accepts the narrative of the illness.

Perhaps the most significant part of my understanding in how to deal with MS’s uncertainty is being a gluttony for serenity and tranquillity. Being silent and being in quiet areas like my bedroom is where I flourish, where I can think, study, adapt and unwind. It is where I know it will be quiet without intrusive outside interference of environmental sounds, and where I can keep my distance and privacy from places where I know MS symptoms are likely to be triggered and interfere with life.

Solitude is not equal to loneliness. I am at ease without interaction with others for periods of time. In that respect, my hearing plays an essential part, as an intense noise coming from human interaction for example, can overwhelm and influence my pain, no matter how weird this sounds.

It’s within that solitude I find peace, where I get to know that new unreliable symptom that makes me wonder about its future and where it might lead me. I assume it’s rare to have a neurological symptom that makes it easier to get through the day without noise, while it’s also terribly sad should it ever grow into a permanent fixture.

Signature WMX

Winner Best Blog Post 2018 Ireland Blog Awards

2018 Winner Best Blog Post with ‘3443 Needles’, Blog Awards Ireland, Ashville Media Group, Dublin, Ireland

◾ MyTherapyApp: Multiple Sclerosis Blogs: 10 of the Best in 2019
◾ Ireland Blog Awards: Finalist 2014, 2015, 2017
◾ MyTherapyApp: Best MS Blog for Simplicity 2018
◾ Everyday Health: Top 10 MS Blog of 2018
◾ Feedspot: Top 50 MS Blog 2017, 2018, 2019


© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2019. Unauthorized use and/or duplication of this material without express and written permission from this site’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and irelandms.com with appropriate and specific direction to the original content.

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