I’m not sure where to begin. Ten years ago, or weeks ago.
Both were Januarys.
The January of ten years ago began with a head cold, and January 2022 began with a desire to avoid a head cold.
Ten years ago, when the then head cold rolled in and worsened, and I began struggling to stay awake at my accounting job, I ended up at my GP’s surgery. A place I wasn’t overly accustomed to. As one GP had said only weeks previously, during my annual bloods, I was his healthiest patient. I wasn’t healthy on that visit or the ten other visits that late winter and early spring.
By April 2012, things were bad, work was falling from a cliff edge, and I’d given up my social life – which at the age of 31 was a big deal. An even bigger one was my participation in my local athletic club, where months earlier, I’d competed in my first full marathon after countless half marathons.
Getting sick of me, my GP referred me to my first consultant. He pulled me into the hospital for two nights and two days of luxurious breakfasts in bed and copious tests.
On Friday, April 13th, I was diagnosed with ME. Myalgic Encephalomyelitis.
My second consultant, a man I pledged allegiance to and hoped would get my life back, told me marathons were out.
I tried to ask him questions, namely, what the hell was ME, but every time I spoke, he held his hand up and said, “I’m the doctor. I’ll do the talking.”
Refusing to be silenced, I managed, between fits of attempts, to get an entire sentence in, asking if he’d read the e-mail I’d sent him prior to my visit. An e-mail setting out a long list of concerns.
Looking towards the floor and then at me, the way a wise old elder stares at the two-year-old swinging herself around in circles and giggling at the silliness of light-headedness, he said sharply, “No, I didn’t have time to read your e-mail.”
Instead of reading, he gave me an exercise plan akin to a rehab plan and told me this was my way back. I sighed a brief sigh of relief and then read the details of the plan.
It included an exercise bike. I didn’t own an exercise bike.
I explained this and enlightened him to the fact that if I drove to my nearest gym to exercise on a bike for two minutes and then drove home again, I’d be in bed for a week.
I asked for the plan to be amended so as to exercise within the bounds of my own home.
He refused any such addendums, snapped the plan from me, tutted, and glared as though I’d uttered a profanity or distasteful commentary. Glaring back at him, the months of frustration held between my eyes and ears burst like a demonic dam, wiping away cars and houses, villages and towns, even a city.
I cried, I cursed, and then, when taking my first deep breath, I found my fist pounding his mahogany desk.
Stroking it calmly, as though soothing a tempestuous cat, I sat back in my chair, smiling meekly, waiting with bounds of courtesy for the god to speak, only there were no words.
Standing abruptly, keeping his eyes on me, he walked gently towards his door, opened it, and nodded towards his secretary.
Walking quietly past him, he handed me something, a business card, telling me, “I want you to see her before you ever see me again.”
Looking down at the card, the word “Psychotherapist” glared up at me as I spat, “you want me to see who?”
“To discuss your anger issues.”
Backing out his door, holding my tongue and writing his receptionist a cheque for 280 euros for the pleasure of his company, I thought, anger, he wanted me to pay someone to discuss my anger towards him?
Sitting back in my GP’s office days later, she apologized, saying she was aware of his temperament. Digging out any other available snippets of help, as there were no ME experts in Ireland, a rehab specialist was eventually discovered.
In the meantime, I had to quit work. It was either quit or be fired, and given my manager in France was talking to my manager in Ireland about that very topic, I had to pull the plug and stop hiding in the bathroom and sleeping on the toilet seat.
Then I waited.
I waited until August. It was London 2012, Katie Taylor won gold. Ireland was on a high. I was on my ass.
My third consultant was nice, empathetic, and advised she had no clue about ME but knew about rehab. My body was on the floor, and the silent mantra became “let the build-up begin.”
GET – Graded Exercise Therapy – began. I won’t bore you with those 18 months of hell. Let’s just say it didn’t work. There was no building me up again. Exercise, it turned out, made ME worse. There are a plethora of studies to prove this. It’s just a pity I didn’t see any until I’d spent 18 months on and off a treadmill, swirling in pain and fatigue and going through lengthy periods where making it to the bathroom was my London 2012 gold medal.
There are conspiracy theories surrounding one study, whereby researchers supposedly proved exercise made ME better. The problem with this particular study is that the definition of ME is very loose, and the definition of better, equally as loose.
I spoke to one of the authors of this study on national radio by accident and asked about the criteria in his study; I’m still awaiting a direct response.
All I knew was that exercise made ME worse. There’s even a symptom to prove this. PEM – post-exertional malaise – meaning an ME patient’s symptoms are exasperated upon physical and mental exertion. I promise I’m not setting you up for a pop quiz, it’s just a point of interest for you to take away or bin, that’s up to you.
In January 2014, I was pulled off GET, and aside from my GP cheering me from the sidelines, I was on my own. Left entirely to my own devices as to what the hell I was going to do with this ME thing.
Luckily, I always liked myself.
I should point out, the path was not made entirely on my own; I do have a long-suffering husband by my side. A man I married one year before I got sick. And as is said, in sickness and in health…
Without GET and without the need to keep pushing my damaged body, and although no one could tell me what exactly was wrong with me, in 2015, I began listening to my eclectic insides, realizing my pulse was an indicator. Keep it at rest, and I could avoid crashing.
Light bulbs were smashed.
I stopped crashing. I got to a baseline and steady state. I was living with ME.
That is, if living meant I was housebound 90% of the time, and a good day was light housework with some light weeding or pottering in the garden between resting and pacing. I had bad days too, 2 or 3 days a week, where I sat out any planned pottering and rested up to avoid a crash.
Then Covid-19 and the question to vaccinate or not came along.
Given I was housebound and any time I left the house, I wore a medical grade mask, given that my husband was fully vaccinated and cautious, I was happy to think we could keep the thing that shall not be named out.
Our house became a military zone. All social visitors remained outdoors, windows were opened religiously, and a HEPA filter and house plants were used to clean the air.
Any time my husband attended a function – which was seldom – he wore his mask and upon return home, kept his mask on and kept his distance from me for 14 days.
By the end of 2021, I was aware of severe reactions in what appeared to be a subset of ME patients to the Covid-19 vaccine. In New Zealand, there were calls for medical exemptions for ME patients, and I had my long-standing GP – who retired just before Covid – swirling about my head. In all her years in my corner, she’d never allowed me to take up the flu vaccine, stating my body ran the risk of a full relapse.
Then came Omicron. As you know, vaccination won’t stop my husband from picking up the thing, and vaccination won’t stop him from passing it to me. Ireland was about to re-open itself fully, and the only words in the air were “Covid’s over.” Of course, the true words were, roll up, roll up, everyone’s going to get it. I didn’t want it.
On January 21st, 2022, I took my first dose of the vaccine. I won’t tell you which one for now.
I crashed two hours later. I’m still crashed. (It’s been six and a half weeks).
I feel as though I’m right back at the beginning 10 years ago and all the hard work I put in to get to a nice steady state has been lost.
I’m operating at 50% of where I was pre-vaccine, and my new GP, my day in the hospital for tests, and the new consultant I met there, have all confirmed there’s no magic wand. I just have to sit it out.
The belief is the vaccine turned on part of my immune system already on or damaged by ME, and my body’s not capable of turning that immune response off. It is hoped four months from vaccination my body should shut down this response as the vaccine wanes and I should find that steady state once more.
For now, I sit and do what I’ve learnt to do best. I wait.