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.
When unforeseen problems force me to go out despite severe ME/cfs, things can get pretty rough.
I had to go out today, needed to send off some paperwork, but my printer ran out of ink again - just changed it about two weeks ago! I needed to print off a load of sheets, so I had to take a bus to get that done at one place, then off on another bus to find a post office to send it.
By the time I got to post office my legs were not working properly anymore, it was like I was wading through lead or mercury, let's just say Nutella (have to keep things positive!). I had shooting pains all over the place, so was reduced to waddling at snails pace (seriously) at one point I thought I wouldn't make it across the road, but the bus driver was patient and waited for me to get safely out of his/her way.
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.
I attended my first appointment with the Chronic Fatigue Clinic today. I finally have an official diagnosis of Chronic Fatigue Syndrome (also known as Myalgic Encephalomyelitis). At last!
I was referred to the CFS clinic by my doctor about 5 months ago, but the waiting lists are long. I've been searching for help online in the meantime and just doing what I can to manage alone.
The clinic is about 45 minutes away and requires a couple of changeovers by bus, so a dear friend travelled across the city to accompany me.