"But you look so well"
Yes, I know. I try my best to act normal, not like someone who's been out of the loop for about twenty years. I can be observed to walk in a normal fashion at a normal pace some of the time. Above all, I try to keep smiling.
So I'm aware that it's almost impossible for anyone to grasp what, if anything, is wrong with me. This is an attempt to explain how my illness affects me.
You can read through a tedious list of symptoms here. But the overiding feature is what's known as "post-exertional malaise", except in my case post-exertional paralysis would be more accurate.
How do you describe gravity?Explaining what it's like to have ME to a healthy person is like trying to explain what gravity is to someone who lives on a planet with no atmosphere. I live subject to these physical forces that constrain almost everything I do, mentally and physically.
Certain exertions or stresses make my whole system shut down or "crash". Standing still, muscle exertion, various kinds of mental exertion, excessive noise, heat, light, cold, alcohol, chemical fumes. By "crash" I mean a gradual onset of breathlessness, disorientation, confusion and increasing loss of muscle power, until I collapse. The degree of exertion or stress I can withstand fluctuates on a daily, weekly or monthly basis.
The collapse is not sudden and visible, like epilepsy. It can initially manifest as "fatigue". It is slower and allows me to adapt my behaviour to avoid collapsing in a public space. My adaptation to these physical laws is largely second nature. I've learned to sit down before I collapse, to limit physical exercise to what I can tolerate, and to avoid environments that are going to make me ill. Just like you learned to walk and ride a bike but you'd struggle to explain the mechanism by which you do it. So my behaviour appears seamless to other people when actually there is this calibration of the distance or time till the next seat, or the next rest, happening all the time in my sub-conscious.
But if you take away my adaptive behaviour, the impact of these forces is dramatic. I have been tested for orthostatic intolerance (tilt table test) and for my autonomic nervous system function. Both times I've had to be sent home from hospital in a wheelchair. I steadily lose muscle power to the point of paralysis and eventually my whole body goes into violent convulsions, and I gasp for breath like I'm drowning. Afterwards the paralysis takes hours, days or weeks to wear off.
This is not accounting for the more or less regular occurrence of "attacks", where the crash happens spontaneously, not triggered by over-exertion. Like a stroke, the physical and mental impairment that follows an attack can be minimal, or it can take days, weeks or even months to wear off.
I am an AmstradAnother way to think about it is in terms of processing power. Normal people, if you like, are like modern computers that can manage several applications at once: play high-tech games, surf the internet, play movies, as well as manage spreadsheets. I am that old superseded computer that crashes if you try to have a word processor open at the same time as your email.
Another analogy: imagine we all have engines with five gears. Leading a normal active life involves being in fourth gear most of the day, going up into fifth if you play sport or take exercise. I spent many years never being able to go beyond first gear because my engine would stall if I tried to push into second. Nowadays I can often chug along in third gear for parts of the day and occasionally manage to go up to fourth. Sometimes I'm back down to first or second during a relapse.
The Spoon TheoryMy units of energy are small and limited in supply. I've recently been surprised to learn that people with other fatiguing conditions, such as lupus and multiple sclerosis, experience something similar. One person described it as starting your day with a limited number of spoons at your disposal. Each activity of daily living uses up a certain number of them. You have to ration them out carefully so you don't use them all up and have to go into "debt".
This is known as the Spoon Theory, developed by a Christine Miserandino who has lupus. Now all of us who are sick and tired of feeling sick and tired unite and call ourselves "spoonies"!