I saw this article on one of the EDS support groups the other day and thought that I would share it! It’s a short and easy article to read but very much worth the couple of minutes it will take to read it! … so if you know ANYONE who has EDS and or ME/CFS, then pleeeease take the time to read it for them!
One of the many parts of EDS that we struggle with is the lack of energy. For us the basic reason is that our bodies have to work REALLY hard to do the same things that other people do, and our muscles work harder to keep the same balance. But even then, some days we wake up with either very few spoons to get through the day, or like the other day and my stupid horse riding escapade, something sucks the spoons out of us at a disproportionate rate and it can take days to recover ANY spoons, or for many EDS sufferers, they develop full blown ME/CFS (or Chronic Fatigue). I personally do not have full blown ME/CFS thankfully, but many times have been diagnosed with many of the traits and about five years ago I was told that I was in such bad space health wise that I was put on a year’s FULL rest under the threat of ME/CFS! It was a VEEY difficult year and my body simply fell apart. I completely lost my voice for much of it, and I constantly felt like I had been hit by a truck, even though I did NOTHING for a year except sit on the couch, stay in bed, or go to the doctor…
So I feel very deeply for ME/CFS sufferers and it is very much a part of my own experience as well as the whole concept of both conditions being “invisible”. People often judge us for not looking sick and tell us to simply pull ourselves together. So I personally can’t stand the name Chronic Fatigue Syndrome, and I found this paragraph from the article really interesting!
In a February report, the Institute of Medicine gave the illness a new name — systemic exertion intolerance disease. Many patients have long criticized the name “chronic fatigue syndrome” for not reflecting the seriousness of the illness. The new name, some say, is not much of an improvement. Some patients call it by an older name, “myalgic encephalomyelitis.” Most official documents refer to it with a compromise term, “myalgic encephalomyelitis/chronic fatigue syndrome,” or ME/CFS.
Why I am also sharing this article is that it is firstly about a very well known specialist who is taking research into this debilitating condition to a whole new level which is ALWAYS something worth sharing, and awareness is vital to understanding, but also because his son is a sufferer, and it is a really sad story but a fascinating insight into just how bad this illness can be! So please read it if you know ANYONE who suffers from EDS and or ME/CFS. This is soooo far from laziness or simply a bit of fatigue!!