The Seven Deadly Symptoms of ME and Long Covid (Part One)

5 May 2023

Let us examine the typical list of symptoms assigned to a post-infectious energy-limiting condition like ME or Long Covid and expand on what it really feels like to experience them. Daily. Forever.

Greetings from Bed. Considering how many of us live here, very little is known about our way of life. To mark the awareness month around World ME Day on 12 May, I would like to shed some light on the exact nature of our existence.

1. PEM

Post-exertional malaise (PEM) is the hallmark symptom of ME. But what do those words even mean?

‘Malaise’ sounds like a Victorian heroine wilting on a sofa. The reality is much less refined. The harsh fact is that after doing any exertion – physical or mental – a person with ME will experience an acute increase in flu-like symptoms between 24 and 72 hours later.

Let’s spell that out.

Imagine you get down and do 100 press-ups right now. You’ve never done more than 20 before. Now imagine how the muscles in your arms would feel the next day. That’s post-exertional malaise.

But people with severe ME can suffer the same feeling of deadweight in their muscles after cleaning their teeth. At my most severe, aged 22, lifting a toothbrush brought about the same fallout as lifting a barbell. Just the effort of existing one day can make you ache all over the next.

How would you cope living as if you have concrete mixed in with your blood? Waking up every morning feeling like you ran the Comrades Marathon the day before? It sounds impossible, until it’s your life.

Even less easy to grasp than physical PEM is the concept of cognitive PEM. Even lying down writing on a laptop, it’s possible to push your brain beyond its energy envelope. I can usually count on having two ‘capable hours’ in the afternoon. If I do more than that, I risk being unable to think, spell or speak coherently the next day.

The only way to avoid a PEM crash is to master the art of pacing. It usually takes Sick people a long time to accept this. For the first few years of my illness, I was stuck in a constant boom-and-bust cycle of recovery and relapse. Learning to Stop, Rest, Pace and halt activities before you exceed your energy envelope is the only way to progress. But honing your ability to only ever do half what you think you can do is HARD. Especially when the parameters shift every day.

I have to lie down for half an hour to recover from washing and getting dressed. I only shower once every three days and rarely cook a meal because the effort costs me a day’s recuperation. I have to lie down for half an hour after meals in order to digest food. I have to rest after every brief chat, whether on the phone or with a neighbour.

After 30 years with ME, I live my life with the dedicated attention to detail of an elite Olympic athlete: pacing my steps, my heart rate, my diet, my supplements. But my goal is not gold medal glory, just survival.

2. Unrefreshing Sleep

You know you’re Sick when the prospect of going to sleep fills you with dread. Let us be clear: Bed is not the cosy place of rest the Well imagine it to be. It is a battleground.

‘Unrefreshing sleep’ is a classic understatement on a similar level to using ‘separate development’ to describe apartheid. It sanitises an essentially brutal experience. Some people prefer the term ‘painsomnia’ but that doesn’t encompass the full horror of the besieged nights we endure.

For me, going to sleep can feel like going to war. The suffocating effects of cellular hypoxia are similar to a dose of toxic nerve gas and my heart rate can drop dangerously low. At 3am, I am usually woken by a shot of adrenaline. Cortisol courses through my body as it desperately tries to boost energy by triggering a fight-or-flight response, heart thumping as if under attack.

I’m lucky if it’s only once; some nights it happens hourly. Often it’s impossible to get back to sleep before dawn by which time the pain is sickening. Every night, my body has to go through this gruelling shit, over and over, like wading through endless trenches. By morning, I’m completely exhausted.

At best, when I wake, I feel like I was partying hard through the small hours. At worst, I feel like I just got hit by a bus. Usually it’s somewhere in between, but I never wake ‘refreshed’. First thing, I am assaulted by sensory overload, nausea and a complete inability to compute. ‘Sleep’ is always something I have to spend an hour or two recovering from.

Imagine the broken nights you experienced when your children were babies going on indefinitely. There is a reason that sleep deprivation is considered torture under the Geneva Convention. Over months and years, the cumulative effect erodes your physical and mental health like relentlessly dripping ice water boring through stone.

This is why Bed often feels like the site of a never-ending war of attrition.

3. Orthostatic intolerance

‘Orthostatic intolerance’ sounds like a mild inconvenience. In practice, it means I can’t breathe standing up. Living is quite a challenge with the threat of passing out hanging over you at all times.

Postural orthostatic tachycardia syndrome (POTS) affects a majority of people with ME and fibromyalgia, and is one of our most debilitating symptoms. Our heart rate increases by at least 30 beats per minute when we move from horizontal to vertical, accompanied by palpitations and dizziness. This is because our bodies’ vascular systems are failing to automatically adjust our blood pressure when we are upright, so our hearts end up pumping intensely to try to compensate enough to get oxygen to our brains.

Salute to my Sick peeps who spend every second standing up scouting ahead for somewhere to sit or lie down, before they fall down.

For people with ME, Long Covid and other energy-limiting conditions, sitting up feels like standing, standing feels like running, and going upstairs feels like climbing a mountain.

Imagine the effort of chopping vegetables while jogging on the spot. Or writing an email while swimming. Or hanging the washing while doing pirouettes. That’s how my body is behaving while I’m trying to do those things.

Everything I do is on the clock. Showering. Cooking. Talking. I’ve got 15 minutes max before I feel so faint I have to lie down. When I exceed my limit, an internal alarm goes off and my metabolism switches into anaerobic mode. Suddenly both sitting and standing feel like sprinting. If I don’t lie down immediately and put my feet above my head, I will pass out. I lie down anywhere: on the pavement, in restaurants, in the bank. Or at least I used to, when it was still safe for me to go out; pre-pandemic.

My resting heart rate is between 60 and 65 beats per minute. Last week, on my gentle 10-minute afternoon walk, it spiked to 195. POTS is the main reason I have to spend 80% of my day horizontal.

How would you cope every day waking inside a body that should be in the Emergency Room? We the Sick have no choice but to keep calm and carry on…

To be continued. DM/MC/ML

The ME CFS Foundation South Africa’s Long Covid Ambassador Mlindeni Gabela will be hosting a Blue Sunday Tea Party on Sunday 14th May at the Isivivana Centre in Khayelitsha, Cape Town. Dr Uvi Naidoo will speak about managing Long Covid in children and there will also be a showing of the award-winning film Unrest.

Dispatches from Bed is a window into the world of the chronically energy-impaired.

Read Part 1: Dispatches from Bed – whose Great Resignation?

Part 2: Long Covid – it’s better to be broke than have your met…

Part 3: The Sick are not faking being ill, we’re faking being Well

Part 4: Do Sick Lives Matter?

Part 5: It’s time to normalise being Sick in public

For more information on Long Covid, read: Still many unknowns, but long-Covid is real and deserves support for rehabilitation, says expert • Spotlight

Sam Pearce has orchestrated music festivals, stand-up comedy shows, community-building carnivals, Africa Clockwise adventures and school climate strikes. Although her body now insists she lives in Bed, she’s still striving to be an intercultural activist for social justice.

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South Africa

1. PEM

2. Unrefreshing Sleep

3. Orthostatic intolerance