Word je bewust van ME (6)

Het is ME-awareness week. In aanloop naar wereld ME-dag op 12 mei, vragen ME-patiënten wereldwijd aandacht voor hun situatie. 

ME komt in veel varianten voor. Sommigen van ons leven totaal geïsoleerd en zijn per dag slechts een paar minuten op. Ondanks de enorme beperkingen waarmee mede patiënt Anil word geconfronteerd, is hij een geweldig getalenteerde actievoerder die mensen weet te mobiliseren en te raken. Net zoals dat hij een getalenteerde balletdanser was voor hij ziek werd. Ik hoop dat hij ooit weer danst. En dat ik dan op de eerste rij zit om hem aan te moedigen.

“Hello, my name is Anil, and this is The Real M.E.

“I used to be a professional ballet-dancer. The first years of my illness, I was moderately affected by M.E. but these days I spend my days chiefly in a bedridden state.”

“I don’t tolerate light, so the curtains are always closed. And I always wear earplugs and earmuffs you know – the big ones for construction-workers – to avoid any post-exertional malaise crash. Because of my orthostatic-intolerance I am only up for about half-a-minute per day, just to get from one room to the other.” 
“These are just twelve steps and then my autonomic nervous system or blood-flow needs to recover for about two and a half hours, to do the same a few hours later.”

“There’s an extra bed in the kitchen and in the bathroom, so I can recover there and get my necessary things done. I can’t read much, write, or even have interactive conversations as everything will make me more ill. Even recording this will give me a post-exertional malaise crash for a few days.”

“I can’t listen to music, watch videos, or have visitors – so it is a very isolated life that I am living and a great contrast to my once active lifestyle and dynamic social life.”

“While this is The Real M.E. it is really not me. I would love to have my life back”

To mark ME Awareness Week, Gary Burgess shared stories from Real People with M.E. Hear them describe their own experiences in their own words: The Real M.E., The ME show special.