When a problem arises, I try my best to find a solution for it. Recently, I've had concerns that people who follow me will assume that the snippets of my days - and I mean snippets, sometimes it's ten minutes out of three weeks - represent what it's like to live with M.E (myalgic encephalomyelitis). It definitely doesn't in the slightest, so it's a scary thought as I've always tried my best to raise awareness for this illness and the last thing I'd want to do is cause confusion about how it affects those who have it inadvertently through my hobby.
The best way I could think of to solve this problem was to call on the aid of my fellow sufferers to help explain what it's
really like to live with M.E, and I hope this paints a better picture than a smiley girl who enjoys sharing the positive parts of her life on YouTube. And a better picture than the one the media sometimes paints
for sufferers, might I add - this is it straight from the mouths of the people who know M.E better than anyone.
M.E physically feels like:
● you're engulfed in a constant state of absolute exhaustion and pain that never eases
● your body is 'running on empty' and there's no way of filling your tank back up
● your head is too heavy to hold up and everything hurts, even your hair
● you are dying, and that at any moment you could breathe your last breath
● you're treading through treacle, every day
● you're carrying a baby elephant on your back
● a constant barrage of symptoms leaving you bedbound for twenty hours a day, often in a dark and silent room with little to no human contact
● living in the body of an ill 85-year-old, even at age 15
● every tiny tasks takes a mammoth amount of effort, as your limbs feel like they've been filled with concrete and you don't have the strength to lift them
● your body is screaming as you push it from bed to bathroom, like its the last half mile summiting a 10,000ft mountain
● you have weights all over your body, then someone has beaten you with a bat
● relentless agony
● you've run a marathon whilst jetlagged, hungover and with the flu - every single day
● your body is a faulty phone battery that's always about to die, and you have no charger
● you're completely drained of all energy and 'life'
M.E is like:
● running a race you cannot even begin to keep up in, watching others run by whilst you struggle to reach the finish line - all whilst being judged as able to run a marathon
● being the hare trapped in the tortoises' body
● only being able to achieve a fraction of what you want to
● having a different "normal", because everything is heavier and every task more difficult
● having the carpet pulled out from underneath you, taking your freedom with it
● trying twice as hard as everybody else to achieve only half as much
● living behind a glass wall, watching everyone else have fun whilst you're stuck at home
● life has been put 'on hold', it's paused and you're experiencing each day in slow motion
● everyone else is running on paved roads and you're struggling through waist-deep water
● not being able to post your 'good days' or special moments on social media as you're scared people will assume you're 'not that ill' and judge you
● struggling to walk whilst counting every step and working out how long it'll be until you can sit down, when you used to be an active and 'carefree' person
● being stuck at the bottom of a well, you can hear life going on above and every so often the light from the sun will hit your face - but then it's gone again and you're still stuck
● having to pick between what you want to do and what you have to do, with the consequences of pain and suffering either way
● wanting nothing more than to be well and have your life back then being told by family/friends/doctors that you're 'lazy' or that it's 'all in your head'
● being utterly weighed down - with pain, fatigue, sadness and stress
M.E mentally feels like:
● you're a prisoner in your own body with no release date for a crime you didn't commit
● you are never taken seriously
● you're a shell of your former self with zero social life
● you're separate from the 'real world'
● you should be ashamed, as because your illness isn't widely known society looks at you like a 'nothing' person with a 'not real' illness
● you're trapped in a body that has betrayed you
● you're constantly frustrated with your body and brain for 'letting you down'
● you are simply 'existing' rather than living
● you're living in a 'poorly bubble', watching the world keep turning but you can't keep up
● you are useless, especially as a mum - it hurts
● you're misunderstood at every turn but everyone thinks they know how you feel
● you've been buried alive, and nobody comes to your rescue
● your goals, dreams and desires have been killed
● you're becoming less 'yourself' and more an 'ill person'
● you're haunted of how poorly you've been in the past and what could happen in the future
● you're a burden to your loved ones
● you're wasting time, because life is passing you by and you're too ill to live it
● you're guilty for not being healthy enough to have a job or see friends, when you know it's not your fault
For many this is the reality of living with M.E. It's important to note that the scale of severity varies hugely, so the ability level of someone with mild M.E is very different to that of someone with severe M.E - and symptoms fluctuate in every sufferer, so it's possible for someone to experience
days like this one as well as days where they're physically more 'able'. M.E is also an invisible illness/disability, so the appearance of a sufferer doesn't always show the symptoms they're experiencing (you can read more about those
here or
here).
I'd like to say a few words about M.E sufferers, because they're some of the best people I know. Reading this post you'd think that we're all on the brink of giving up, and whilst I'm sure we all have our days, every M.E sufferer I know is filled with love - they're brave, grateful, determined and positive souls who never lose hope. They're university graduates, parents, business owners, disability advocates - hardworking, decent people who raise funds for biomedical research so that a cure for ME can be found, help others whenever they can and teach us all a thing or two about looking for the silver linings.
More information as well as support can be found at the
ME Association and
Action For ME, and many find friends in fellow sufferers through the #mecfs hashtag on social media. If you have any links you'd like to share or websites you've found useful et cetera, please feel free to share those in the comments to help others.
