The fact that I have written this article is one solid indicator that I am now out of the severe column and squarely planted in the mild to moderate column.
I am able this year to bike ride, swim, go on a picnic, and take the dog for a walk. I know of too many people with severe ME/CFS though who can't remember the last time they did any of this. And yes, that is compounded by the common ME/CFS symptom of brain fog and cognitive chaos.
Severe ME/CFS renders the individual housebound or bed-ridden. Getting out of bed just to walk down the hall to the bathroom or the living room to collapse in a chair can be a marathon.
Being able to do it without bumping into walls or falling down can be a challenge. Will I make it this time? Always an adventure, even in the tiniest exertions.
Postural orthostatic tachycardia syndrome (POTS) and orthostatic intolerance (OI) make the trip rockier -- or impossible.
Breathing can be exhausting. Sometimes just lying down inhaling and exhaling can take everything you've got.
Food sensitivities and problems with the digestive system can make getting any nutrition a nightmare.
Despite the common misconception that ME/CFS is typified by being tired or sleeping long hours, the sufferer is just as likely to be unable to sleep in any normal way, within a 24-hour period.
It's common for sleeping hours to be turned upside down, with any waking hours happening in the middle of the night, while the daytime hours are spent in a sleep that, no matter how long, is usually unrefreshing.
I am only touching on the tip of the ME/CFS iceberg of symptoms and limitations. There isn't room in this article to paint the whole bleak picture of multisystem breakdown.
Understanding and Remembrance Day for Severe ME is not an event that's well-known. Part of this is due to the fact that it is only the second year of its observance. And then, there is the peculiar but indisputable fact that for whatever reasons we almost never make any kind of mainstream news.
It's left almost entirely up to the ME/CFS community of patients and caregivers to hold up the banner and lift up the megaphone to make some noise.