The spookiest thing about chronic fatigue is that science doesn’t understand it. As one of my doctors explained, no branch of medicine ‘owns’ this cluster of illnesses yet. In other words, they don’t know where the problem originates in the body. Maybe it’s caused by inflammation in the brain. Maybe it’s a gut flora issue. Maybe it’s an ancient Aztec curse.
Also spooky is the way chronic fatigue affects the entire body and the brain. One theory has to do with a problem in the way the body creates or uses energy at a cellular level. This means the cells are affected throughout the body – brain cells, muscle cells, lung cells, etc.
Whatever their cause, my random assortment of symptoms would make a strange alphabet book.
A: Alcohol intolerance
Long before I realised I was sick, I’d have one drink and feel parched for hours, even if I drank a litre of water after. It was like I’d had a glass of sand. Then that one drink would wake me up in the middle of the night and keep me up for a couple of hours. I assumed this is just what happened when you hit your mid-thirties.
A, again: Air hunger
Air hunger is a fun term for not being being able to get a full breath. It feels like metal band clamped around your lungs, preventing them from fully expanding. This is why my GP thought I’d also coincidentally developed asthma. Air hunger comes and goes, and can last minutes or hours. I often get it when I’m doing something physical, like walking, but it can also happen when I’m sitting at my desk. Nothing like being winded from typing to remind you how sick you are.
C: Concentration impairment
My brain is affected in all kinds of ways. Like all these symptoms, this one comes and goes. Some days I can’t focus on anything and will wander the apartment, randomly starting things, then abandoning them after five minutes.
E: Energy spikes
Occasionally I feel fantastic and have to restrain myself from attempting to answer all the emails/clean all the things/run all the errands/write three books to make up for lost time.
Fatigue is more than tiredness. When I’m tired, I can still do things. Fatigue is the body’s determination to stop doing things, and after a time it becomes impossible to override.
Maybe fatigue related, who knows?
I assume this is the brain forgetting how to sleep.
J: Joint pain
At first I thought I’d escaped this symptom. Then my left ankle and right wrist simultaneously developed a peculiar crunchiness that also randomly comes and goes.
L: Light sensitivity
The more tired I am, the more light hurts my eyes.
M: Memory problems
I’ve struggled with both short- and long-term memory since becoming ill. At my worst, I couldn’t read because by the time I got to the end of a sentence, I couldn’t remember how it had started.
More M: Muscle weakness
I’ve heard about many people with chronic fatigue who physically can’t get out of bed. Though I had a few days like that, mine isn’t nearly so bad. Still, most days my hair dryer feels like it’s made of solid concrete.
N: Noise sensitivity
My brain became particularly sensitive to noise. It struggles to filter out background noise, and when I get tired, I can’t separate the sound of someone talking to me from background sound. I’ve also realised sound takes a physical toll on the body. In an especially loud room, I can feel sound, like lying on speaker.
O: Orthostatic intolerance
This is my new favourite term. I get so tired that it’s unbearable to be upright, even when sitting. As soon as I lay down, I feel significantly better. I thought I was going crazy until I discovered the term for this exact symptom.
R: Reactive depression
S: Sore throat
Frequently waking up with a sore throat is one of the reasons I spent a year thinking I was coming down a with a flu and just had to rest a lot to ‘fight it off’.
T: Temperature dysregulation
Prime example: my brain no longer suggests I remove my jacket before I end up with a heat rash.
Being absolutely exhausted but lying awake all day is pretty much the definition of a waking coma, isn’t it?
Other days I sleep 16 hours or more.