MS, a cognitive kerfuffle of sorts

So, World MS Day came and went, as did my appointment at the hairdresser and heading out to visit the local shopping center where I haven’t been in what feels like forever. 

All the above events somehow fell off the cliff of otherwise easily accessible cognitive functions. 

Add MS fatigue, trigeminal neuralgia, other nerve pains, and lack of coordination, and you pretty much malfunction in all sorts of ways. Call it a few kerfuffles all at once, if you wish, or a gang-related grey and white brain matter spat.

Anyone with a few books missing in their vast row of cognitive encyclopedias, will have said at some stage, “Hhmm… where did I hear that before, because I know that I know it, only I don’t know in which part of my brain I dumped it.”

In a more aestheticly worded answer, you might also feel, “I can’t recall, so excusez-moi the cognitive malpractice of millions of fiery neural explosions lost on pathways made of concrete coloured brain matter. Please do forgive them, it’s not their fault.”

While I make light of said idiocy in the upstairs chamber, I find it best to address it with a sense of musical humour. Hence, I sing ‘Do I know or do I not?’ sung on the song ‘Should I stay or should I go‘ by the Clash.

But I digress.

It’s hard to imagine we’re a couple of years into the roaring 20s of the new millennium. Where did 2020 and 2021 go to?

Never mind the answer. Rhetorical question.

Sarcasm and I are best friends.

Really.

The past few months, Ireland is back to behaving as if it were pre-2020 times and forgetting what two years under COVID-rules were like. In fact, it’s been a crappy, effed-up time of losing life at a frightening speed, or for the more egotistical, refusing to give others the right to live, extending our COVID-19 experience to abnormal levels of anxiety.

Thank you not.

Excuse the language, my friendly demeanour is broken at 2.30AM and doesn’t catch the intent all that well.

I admit, I have given life outside my new four walls a wide berth the past two years, living in a sort of greyness only people with multiple sclerosis understand. Don’t take this as us being rather special but looking back, we had a very misunderstood relationship not only with nearest and dearest, but also with medical experts who didn’t know where to place us on the vaccination-priority list. Were we immune-mediated, immunocompromised or immunosuppressed? Why were serious comorbidities disregarded, and who decided we were suddenly healthy enough to drop us down the priority list, fit enough to stand in between every healthy subject in line? Oh no, worrying like this, we do not miss it.

Fear not; however, Doctor Luke O’Neil, Irish doctor for the World Health Organisation, said something along the lines of there being more COVID-19 and other pandemics!

Screech… 

Yep. Other. More. Quicker.

The not-so-novel-anymore-coronavirus is like ‘Fast and the Furious’, part 1158. COVID is back on the rise in hospitals as well as in the rest of society, according to our vice prime minister. He should know. He’s a medical doctor.

And damn cute as well.

Sadly, we should all have learned a valuable lesson after two years of start/stop lockdowns, near-lockdowns, partial-lockdowns, and personal lockdowns.

Of course, I worried about family and friends, but I can’t say it was awful. Being alone is what I do best. But, I never felt like I fitted in – especially while growing up. I’m an introvert (and have been assessed as a Meyers Briggs INFJ personality type four times over a span of 20 years). INFJs cognitively function on a different level in an intuitive play of gut feelings served à la carte. And no doubt about it, the more time we have to ourselves, the more we appreciate it and hone our invisible traits.

Reading the room or sensing things is tiring, however. If anything, I hate adding textbook psychological facts to intuitive feelings and to the insight that shows itself in ways that are hard to explain to those who mostly operate on brain knowledge. Keep reading though, as I’m not a clairvoyant, so I won’t trick you.

On the contrary.

Whichever way INFJs experience the world around them -inate need to help others even if it kills us- one thing people with multiple sclerosis need to avoid is the impact of society’s negativity, which anno 2022, is no small feat.

Hence, I crave time to be by myself. And despite this, like many INFJ personalities, my interest in the world knows no bounds. Being a current affairs addict, as soon as all kinds of hoopla happens, I will try to dissect human nature, political mayhem and societal impact.

This year alone, I dug deep in Ukranian history, Putin’s megalomania and Russia’s need for dominance but when war-torn images of Ukranian devastation became too much, I jumped off that boat. I landed into the world of intimate partner violence drama experienced men, in a trial everyone seemed to be talking about, and the Johnny Depp V Amber Heard trial had my chin scraping the floor of shock. This court case proved that female celebrities can be as devious as the characters they portray. Aside from my disbelief of Heard’s behaviour, I continue to say that she needs a mental health intervention, as someone with a borderline/histrionic disorder filled with anger should not have been awarded surrogacy of a 2-year-old child. What if her BPD/HPD behaviour gets worked out on said baby?

But sure, her life, her decisions, n’est-ce pas?

And, like so many, I’ve been glued to the January 6th Committee Hearings because democracy is at stake. And this I feel deep down, why, what, where, how, who, and for how long can we throw Donald Trump and his sycophants behind bars. The constant need to educate myself is one best done alone, as concentration is limited as yawns takes over.

Before moving to Ireland 20 years ago, I was a library assistant. The days I worked alone were the most fruitful because I spent them with Shakespeare, William Butler Yeats, James Joyce, Stephen Hawking and every other fiction or non-fiction author I’ve read up till then. If I needed an incentive to work hard, a library all to myself among my bookish friends was it.

After moving to Ireland, I was an incident coordinator for a multinational company, and I loved it when I worked from home. A few years after my MS diagnosis, I had to retire early – at age 36.5 – and I cannot remember one day of boredom since.

Then again, my cognitive skills have taken a nosedive, so there might be some boredom.

If you were around when boredom was experienced, please reveal yourself and detail said boredom.

In short: I’ve proven to everyone how much of alone-time I can live with, and how much of an introvert I really am, as well as the INFJ that wants to change the world from within, from behind the front door if need be. If it weren’t for COVID-19, I’d no doubt have shown my face in public more, but I’ve always preferred introverted activities and feel happiest when I’m in my own bubble, or in the bubble of likeminded introverts. 

For all intents and purposes, life is what you make of it yourself. You are the only one who decides which course to take, whether good or bad. As William Ernest Henley wrote in his poem ‘Invictus‘ after finding strength in adversity when a doctor managed to save Henley’s remaining leg from amputation due to tuberculosis,

I am the master of my fate,

I am the captain of my soul.

And that we all are. Men and women, each of us has a cross to bear whether you have a chronic illness, lost a loved one or because life forced you to go in a different direction than you intended to. Never ever forget, though, that you are worth every cent, every breath, every smile. You have purpose, even when you don’t know what it is yourself.

Life with MS is never easy, yet it will make you stronger without even noticing how strong. Unless and until you find yourself stuck on a road of unimaginable hardship medically, professionally, financially, spiritually, and whatnot, one day you will look back on life and say, “How the hell did I get through that?

So yes, consider me missing in action or missing some brain waves on the horizon.

But…

I’m here. 

Alive.

If you liked this post, why not read these:

MS: eloquent silence of the weird and wonderful (3 April 2022)

Non-immunosuppressive people with MS in Ireland not allowed early COVID-19 vaccination? (22 March 2021 / 4 Comments)

COVID-19: a thought-provoking, dire warning by WHO’s Dr Mike Ryan (26 February 2021)

MS and obesity, MS Ireland MS & Me blog (June 9th, 2022)

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
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