Happy M.E. Day

It is M.E./CFS awareness day today.

As one of my friends with M.E. put it once "happy f-ing day to M.E."  Haha

There were the early years where I would do my little part to try to raise awareness.

While there is way more science showing biologic abnormalities than when I got sick, I have yet to meet a Dr. outside my old specialist who has heard of a single one of these studies or has any kind of knowledge about the illness.  There is still no diagnostic test, there is still not a single drug to treat M.E. specifically.  The amount of funding going towards research is laughable.

And the rare time where I disclose my diagnosis, I get to hear the stupidest things….here's a small selection from over the years:

• "I'm really tired all the time too, maybe I have that?" - M.E. is multi system illness, not 'tired' 
• "Have you tried changing your diet"? - no, in all my years of suffering, I didn't think of that one, duh
• "CFS, you know, tired house-wife syndrome" - this one was from a Dr.
• "Eat your vegetables" - yes a chronic multi system illness can be cured by vegetables
• "Try meditating" - while helpful for coping, once again, not a cure 
• "You need to get out more" - because I just love laying around ill at home &*%$#$!
• "Try swimming" - really? (side note: have tried this numerous times, but found I usually crashed just from the outing - even without swimming)
• "Your problem is low iron" - sigh
• "Sometimes I'm socially phobic too" - a phobia is an unrealistic or irrational fear, those who are home or bed-bound due to illness are not 'phobic'

I better end that list before I spiral further down the bitter train.

On another note, I had no idea I had so many M.E. friends on facebook until the last two days when much of my newsfeed has been filled with M.E. awareness stuff.  I guess one good thing that has come out of chronic illness,  is all the amazing friends/fellow sufferers I have met along the way.  Such a strong resilient bunch of people who endure unthinkable burdens of illness daily often without support from family or the medical establishment.  

(I am in no way GRATEFUL for the 12 years I have spent plagued with constant viral symptoms AND WEAKNESS COMPARABLE TO THE WORST DAY OF INFLUENZA)! That said, sometimes good things can be found within the muck.  Like the friends I have made, learning about art and printmaking, being able to read a lot, learning to be alone.

What have I done to raise awareness on Facebook? NOTHING. For one, I'm not completely 'out' on Facebook, although if you really wanted to know what illness I had, you could figure it out from the groups I'm in.

This year I'm feeling jaded.  It's almost been 12 years sick.  I'm just as sick as I was 12 years ago. I'm also older and incredibly deconditioned. For example, I have the added bonus of a lower back that's always seizing up when I try to do the smallest of things.  Also, the POTS has gotten worse due to deconditioning, etc. ect.  And I've spent so much of the last 12 years laying in bed or on the couch alone….just trying to get through the day until I fall asleep.

And what treatments out of the 100s that I've tried have helped? A small handful at best, and none have brought me more than mild improvement.  For example, if I pace my activity and never do too much activity, I can avoid some of the worst, most fluey days. On the other hand, I miss out on much of life and am terribly deconditioned from being inactive, making a lot of things worse.

Interesting fact: 

Did you know May 12th was chosen because it's Florence Nightingale’s birthday and she was thought to have had M.E. or an M.E. like illness?  The man who instigated M.E. awareness day was a sufferer and advocate who after years of suffering, had enough, and ended his own life.  Very sad, but Thomas Hennessy's legacy is a big one.

I actually wrote my 'story' about getting ill in order to raise awareness one year for M.E. day

http://upnorth-gailstories.blogspot.ca/2009/09/advocacy-my-story.html

If you have M.E. (or have a friend or family member with M.E.), what are you doing to raise awareness, if anything? 

A few nights ago, I took some photos of the harbour.  You can still see some ice (in the harbour and in the distance), but we are starting to get hints of spring here.