What Having M.E. Is Really Like

19 December 2015



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.

Thank you for every single one of you who contributed towards this post, we are making a difference and there is a light at the end of the tunnel. And thank you to you, reading this post right now, it means a great deal!

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