After 29 yrs of living or should I say lingering with the horrendous condition known as M.E (Myalgic Encephalomyelitis) I'm never quite sure what to write that hasn't already been said, but as it's M.E awareness month I feel I should say something.So in response to some recent ignorance I came up with "My M.E Life of Riley" and thought I'd record it to video, unfortunately being at the receiving end of such ignorance is nothing new when you have M.E or other chronic conditions I'm sure? But social media is a great educating platform to address it.
I must've recited the piece 50 times or more in my head perfectly, however, with M.E it's getting it from our brain to our mouth that's the problem, it's like squeezing words from the back of your head through a dense wall of marshmallow in an effort to get them to the front, by which time we've forgotten which word we were attempting to squeeze through in the first place.
By my 8th attempt I think i'd recited every curse word on the planet (apologies to my mother........and my neighbour) . Plus I'm having problems with my eyes at the moment, all part of M.E and Fibromyalgia and something I'm used to but it just means my eye muscles keep going into spasm, think extreme cramp but in your eyeballs, so by the time I completed this spoken word it was old Squinty eyes 12th attempt .
Recently I was having breakfast in my local greasy spoon just a three minute sloth crawl from my house, and while for some that doesn't warrant fanfares or uploads to Instagram, when you've experienced being bed-bound and housebound for two years nothing's ever the same again, you appreciate every little thing massively because firstly you know what it feels like to have the very fundamental things you've taken for granted taken away and secondly it's the little things that become your world and you hold on to them in the hope that if you hold on tight enough one day they'll eventually lead you back to who you were and where you were before illness struck, sun and rain on your skin, bird song, a flower that's bloomed, hearing people chatting outside, and yes, poached eggs on toast at the local cafe, gratitude for everything is magnified.
However the other week someone I know popped in to get a take-away coffee, I nodded and said "hallo" he responded with a tut followed by "Look at you living the Life of riley" while also rolling his head in sync with his eyes ( Proving that men can multi-task after all )
I didn't respond because i've learnt over time that there's no quick fix for ignorance and often responding just fuels it further , plus where energy is precious I'd rather use it for something more worthy, also silence can speak volumes, the onus is on the other person at the end of the day, It's not up to us as M.E Sufferers to justify or prove ourselves and our condition to anybody.
Unless someone's in severe M.E mode in which case you wouldn't see them at all because they would be bed-bound with oxygen tubes, feeding tubes and other tubes trailing from various orifices, or someone's in a bad M.E relapse meaning they would be housebound, you can't tell someone has M.E just by looking at them.
You wouldn't see a cancer sufferer out and think they must be cured to be out socialising? or that they must be faking the illness because how can someone with cancer be so nicely groomed and still retain their humour and be laughing ? As i've mentioned before, over the years when i've written articles on living with M.E i've been contacted by those who have suffered from both cancer and M.E who wanted to tell me how they found M.E worse and given the choice they would rather have cancer.
The first time I received such a call I have to say I was shocked, it's not a competition of course but it's a very bold statement to make, and since that first call I've gone on to receive many similar calls and emails, which should inform people to just how awful living with M.E is?
We don't have a choice when it comes to whatever illness we're dealt, but we do have a choice of how to handle it, and over the years i've met the most amazing people, those with physical illness such as M.E, Cancer, Ms, Lupus, Cystic Fibrosis, Brain injury, C.O.P.D and a zillion others, plus those with mental health issues ranging from depression, bi-polar to schizophrenia, and not one person has felt sorry for themselves, they have been stalwarts, warriors, determined to live the best life within their limitations, you wouldn't know by looking at any of them that they were ill because they choose not to share their daily struggles and misery 24/7, not everyone is a "benefit scrounger" living a life of riley. So for the well and healthy amongst you please remember that just because you can't see something, it doesn't mean it isn't there, and on that note, i'll leave you all with one word, Oxygen ?
Til next time, Stay Blessed,
Back Before Elvis