Anybody who has ME or CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) will be very familiar with the boom and bust cycle. ME's main characteristic is Post-Exertional Neuroimmune Exhaustion (PENE) also commonly referred to as Post Exertional Malaise (PEM). Feeling really ill, weak and exhausted after any physical, emotional or mental exertion.
This means brushing my teeth, getting excited about a visitor coming, answering the phone or writing this post is exhausting and will cause an increase in a variety of symptoms. The problem is that when I feel better on a particular day, I tend to want to do more because I feel able and would like to participate more in life.
But pushing oneself to do more simply because you feel okay in the moment, is not really an option for people with ME (pwME). Our payback is often delayed for up to 48 hours which means that I might feel capable in the moment, and may even have no increase in symptoms for hours later, but then 2 days later I am completely incapable of doing the most basic things.
December 3 is International Day of People with Disabilities. It's a great opportunity to raise awareness and make some noise all over the internet (and in real life) if you can manage it.
The message I want to get across this year, is that not every disability is visible.
You might be wondering why on earth I'd write about the symptoms of ME/cfs when everybody knows Chronic Fatigue Syndrome or ME is about always being tired. What most people don't know is that this neurological illness causes dozens of unrelenting symptoms that fluctuate constantly and are quite unpredictable. The very least of these is an unfathomable exhaustion at the slightest exertion!
Fatigue is the least of our worries - let me share with you the list of symptoms that ME patients have to deal with on a daily basis, you might just be surprised at how strong we really are... not at all the lazy, weak, not-trying-hard-enough people that the general population thinks we are! We are warriors fighting constant battles within our own bodies every minute of every day.
It's Invisible Illness Awareness Week and this will be the first time I am participating in an online awareness campaign of this kind. Today marks the end of six months since I got the viral infection that changed my life. That gloriously sunny day in Italy on the first of April. It all happened so quickly and unexpectedly, I was out cycling in the countryside one minute and in bed the next. My body reached a point of weakness and exhaustion that I'd never known before and nothing has been the same since.