The whole Sick community is wiped out, lying on their backs in Bed recovering from awareness-raising around World ME Day on May 12th. For some that meant protesting for a couple of hours outside the Washington Monument; for others it was participating in the global Blue Sunday Tea Party despite being housebound; for the most severe, it was merely being active online on that day. Many of us spent the second half of May battling Post Exertional Malaise (PEM) as a result.
Let us continue our exploration into the seven chronic symptoms of energy-limiting conditions such as ME and Long Covid.
There are dozens more I could mention. Palpitations. Tremors. Nausea. Migraines. Temperature dysregulation. Air hunger. Heart rate spikes. But let’s focus on the big ones:
4. Brain fog
Brain fog sounds like something that might be waved away in a brisk breeze. In reality, it means terrifying gaps in thinking and memory.
Our metabolism’s inability to produce adequate energy on demand results in a lack of oxygen being carried in blood to all tissues. In the same way oxygen-starved muscles in our limbs become paralysed by lactate during PEM, our hypoxic brain function slows to a fraction of its previous capacity, as if operating underwater. I have a degree in English Literature but on days following any exertion, I struggle to spell and sometimes even to speak.
I frequently sound like someone with dementia as I grapple helplessly for words just beyond my reach. Recent examples include “shred thing” for cheese grater, “green shaky” for colander and “wet tops” for raincoats. Thankfully, these lapses are temporary, but when you are trapped in this state, that fact is of little comfort.
When my ME was ‘mild’ through my thirties, when I was pushing too hard, brain fog would show up as a sudden inability to do basic maths.
At my most severe, while completely bedridden for a couple of years in my early twenties, I spent months at a time marooned in hypoxic brain fog so dense and suffocating it should really be termed brain smog.
Sometimes I would briefly ‘come to’ from this zombie state, and glance around, horrified, before sinking back under again. It was like my brain was being strangled.
5. Sensitivity
Hmmm, this sounds a bit owweee. But our sensory sensitivity is more than eina, it’s disabling. For me, exposure to light can feel like being clubbed over the head. Especially first thing in the morning. Brutal, and sickening, like an assault.
This is why people with energy-limiting conditions are never without sunglasses and people with severe ME spend their entire lives in darkened rooms wearing ear defenders. Noise such as drilling or hammering nearby can knock us out for days.
Scent can also be disabling. A sudden waft of washing powder or perfume or coffee can make me retch. Paint fumes, Doom and cigarette smoke give me an instant headache. Strong chemical odours and mould cause brain inflammation which makes my cranium feel like it’s about to explode.
Food sensitivities are major hurdles. When I first became ill, I suffered from severe bloating and bloody diarrhoea for more than a year before I figured out my stomach couldn’t digest gluten anymore. I count myself very lucky that I can still eat fruit; many cannot.
Most people with ME completely lose their capacity to tolerate alcohol. It becomes like poison for us. I can’t do caffeine either and rarely have sugar – a piece of chocolate affects me like cocaine and will keep me up all night!
Most disabling of all is sensitivity to motion. My neurological reaction to vibration is so great that going even a couple of kilometres in the car can trigger concussion.
6. Pain
My daily morning pain is like the worst day of your three day flu. Achy all over to the extent that it’s a challenge to keep standing up. With added spine inflammation, brainstem throb and kidney bruise.
Depending on what I did yesterday, I also have PEM pain in limbs and joints I may have used with carefree abandon. Hanging washing on the line. Dyeing my hair. Typing. All those indulgent activities will result in some degree of fallout in fingers, arms and shoulders.
There may also be headaches or gut pain as my under-fuelled body struggles to cope with menial tasks like digesting or buffering light and sound. In winter, add lymph node pain in armpits, and a sore throat, like you’re swallowing through knives.
The Sick are caught in a terrible Catch 22. The only way to cope with chronic pain is not to dwell on it. If you intentionally put your focus elsewhere and dampen your trauma response you can stop magnifying it. But often the only way to persuade other people to take your pain seriously is to narrate and display it. Being forced to perform pain for doctors, teachers and family members lacking in imagination and compassion is demeaning and staminist.
The Well need to understand that talking about pain is like talking about grief. If you acknowledge it, it can overwhelm you. Please don’t ever ask me how I am feeling today. With symptoms 24/7 how do you think I feel? Rather ask me how I am coping today.
I have to be careful to thank my body. Not berate it for betraying me and letting me down, as I did at the beginning. But appreciate it, for continuing to hold me up, despite everything, through all these years. If I am not kind to it, who will be? No one else understands what it is going through.
7. Fatigue
Fatigue means different things to different people. When Well people say they’re struggling with fatigue, it might mean they don’t feel up to going out tonight, or need a quiet weekend to catch up on their sleep.
To the Sick, struggling with fatigue might mean being unable to hold a phone. Getting trapped beneath blankets because you’re too weak to turn over. Being unable to lift a cup.
People with Very Severe ME are too fatigued to swallow and have to be fed by tube.
‘Chronic fatigue’ is nothing like tiredness. It’s incurable exhaustion. Sleep cannot shift it. Best-selling author Laura Hillenbrand’s metaphor sums up the impact: “Fatigue is to this disease what a match is to a nuclear bomb.”
First published in the Daily Maverick on 31st May 2023.
Caption: Awareness posters for World ME Day supplied by the World ME Alliance
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