August 8th seems like an appropriate, if ironic, time for Understanding and Remembrance Day for Severe ME. The month of August can be a time to take advantage of all the glories of summer ... if you're not ill and living in poverty.
People living with severe ME/CFS don't have that experience. For some, the heat and sunshine are a double whammy they must avoid. For others, looking out the window on a beautiful summer's day is something of a heartbreak.
Beautiful? Absolutely. Out of reach? Oh yeah.
Thinking about taking the family on vacation? Not if you have severe ME/CFS. You don't have the energy, the equilibrium, the neurological stability nor the money.
Summer is about the same as the rest of the year. Except that if you can't afford or can't handle air conditioning, it's harder to tolerate. And the frustration of having to lay back and watch the world go by without you can be worse this time of year.
Dream of going swimming? Fishing? Boating?
Nix, nix and nix.
What about a picnic? So many potential problems here. If someone else is preparing and packing it, then there might be a chance. Otherwise, you'll find yourself in bed before you've got the lid back on the mayo.
But maybe someone else is taking care of preparations. Then you've just got to be able to sit or lay in the car, walk to the picnic site and eat.
Now. Some people with severe ME/CFS can't sit, or lay, in the car -- they can't leave the house. Maybe they can't leave their bed. Walking anywhere is an ordeal. Eating may be chancy.
Does all the exertion destroy your appetite and stir up unpleasant ME/CFS symptoms? And are the few foods you are able to stomach portable to a picnic?
Never mind, it was just a thought.
No bike riding. No walking the dog in the cheery morning light.
While Understanding and Remembrance Day for Severe ME is in August, it's not just about the summer, of course. ME/CFS is a year-round affair, and it can be just as bad the rest of the year.
I no longer have severe ME/CFS but I did for many years. 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. It is up to us, the people living with ME/CFS who undertake to bring the rest of world into understanding and remembrance of us and our ongoing tribulations.
Hence this article. So please, remember us on August 8, and every day. And please try to understand the enormity of the suffering that is ME/CFS.
August 8th – What is the one thing about suffering with severe ME that the world needs to know? Phoenixrising.me. Retrieved August 6, 2014.
Chronic Fatigue Syndrome Survivors: 10 Things We Won't Be Doing This Summer. EmpowHER.com. Retrieved August 6, 2014.
Visit Jody's website at http://www.ncubator.ca
Reviewed August 7, 2014
by Michele Blacksberg RN