#DontIgnoreME Understand ME! -Myalgic Encephalomyelitis

The 8th of August is Severe ME awareness day. This day is dedicated to the people who have sadly lost their lives to ME and the 25% of the 250,000 sufferers which are severely affected. This means that they are wheelchair, house or bed bound for long periods of time and suffer with daily severe pain which even morphine based and other pharmaceutical drugs barely touch. Paralysis is another common factor for severe sufferers and can last days, months, years and even decades at a time.Some are often tube fed due to the gastrointestinal and digestive system being damaged (and causing a range of Gastro disorders to develop). Hypersensitivity to life in general often occur. Many people with ME of the severe severity are very sensitive to light, noise and smell and often don’t have the energy to speak or cooperate because of the debilitating fatigue and frustrating cognitive dysfunction. 
There is lack of awareness for ME in general. More so for how severe ME can actually get. It’s dangerous, it further damages the autoimmune system-putting heavy strain on the body, causing complications, other illnesses and in all honesty, it destroys your life. It’s as if an alien invasion attacked earth and all the active, healthy, happy individuals are targeted, held hostage and tortured with a monstrous illness which infects every aspect of the human body. An infection which isn’t contagious, but it effects people across the globe.

More people need to know what it is and what it’s like to live with something which has no magic antidote. No cure.
In summary, alien best describes many people who ‘live’ with severe Myalgic Encephalomyelitis… The name itself sounds foreign and is unheard of and also not believed to be real by many- just like hundreds of thousands that don’t believe there is life in space. There’s not many theories to support the fact that aliens are real or that they are just a made up si-fi fantasy. However, the is real physical evidence that ME is in fact as real as MS, heart disease and cancer yet it is a illness which is mocked and never taken seriously.

The sick persons life, their families lives, their souls and their everything is enormously affected by the barbaric condition; making the sufferer reluctantly feel: abnormal, distant, lost, and as if their mind is on mars. Their thousands of thoughts, goals and dreams have once rocketed as high as the moon, but when becoming ill they drift off into outer-space, and most often fall amongst the stars. Stars that are dull and have lost their sparkle in the sky and eventually crumble to become a speck of dust and then die. The ambitions for a severe ME sufferers future are unfortunately similar to a dead star. Their future was once upon a time clear and bright. But now? Now their future is zapped from the atmosphere. Their life has been hit by a sudden meteor shower. 

Just Imagine a gigantic bolder hitting you unexpectedly while enjoying life and its surroundings, shattering what you once had into millions of minuscule pieces. The remainder of the smaller rocks from the meteor shower split and spread out along the MEer’s pathway, causing a bumpy and unsteady journey ahead despite the first powerful punch of the first heavy hit- the unwanted autoimmune disease diagnosis. It doesn’t stop at that.

Within this situation there is a very unwell isolated individual watching and waiting to join everyone on earth; to participate and join them in peace and to witness the normality of other earthlings. But now, All they have left is the remainder of that meteor rock. A memory. A very old but protected and preserved one which will be stored in the museum of the body- the heart, until the day their soul pasts over.
Living and coping with severe ME and potentially other conditions can feel like being a three headed extraterrestrial with its insides turned inside out! One head being the originally once healthy individual, and the another with the face and personality of the devilish and typically fearful creature which tries to swerve every sufferer from a determined life of mighty mindfulness despite hardship-we call him the negativistic. The third head is the person in the middle-the warrior. He/she has two minds on either side which are on two opposite ends of the thinking spectrum and are at war with each other. The middle mind needs to exterminate the other two in order to be in control, as for that head is the one who is living in the present. He/she is the one who needs to be thriving with positivity, and winning in order to survive. Why? because it is the head wired directly too the sick body and has to feel a life time full of pain. This head needs to learn the power of acceptance; accepting that life will never be what life once was, and to recognise that aborting mission with negativity, and letting who you are die before you actually do gain your wings is no option.

This middle head works so hard to stay afloat and kill off the two outer heads to remain in relatively human form with strong mentality and will power to live despite not a lot to actually live for, for one reason only…

Tomorrow may never come. 

To know that and living with that in mind is the biggest challenge of all. 

That’s the life of someone living with severe Myalgic Encephalomyelitis. 
Nobody understands what it’s like to have the unwanted species we call severe ME unless you’ve experienced it yourself. But please, if you’re  fit and healthy and you’re ,reading this… jump into the affected individuals moon boots and try to imagine what it would be like even just for a day, be thankful for what you have, love life and LIVE!! Because one day it could be you feeling as alien as I, a severe ME sufferer and thousands of others do. 

Life is precious. 


Side note: talking for those who are critically ill and in memory of those who suffered so long, who weren’t treated respectfully and those who are now in heaven… 

We sick girls and guys maybe physically weak, but no matter how hard life hurts us will never surrender. We will fight to the very end. We will fight for what we deserve. Our voices will be heard.



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3 thoughts on “#DontIgnoreME Understand ME! -Myalgic Encephalomyelitis

  1. Thank you for writing this. This is me for the last 20 odd years! Even today I was off with my husband without my wheelchair but propped up with my rollator walker to a Promotion meeting but wham ! Woke up and almost straight back to bed exhausted and in pain again! One day different to another. Can’t plan! Husband has learnt to have a life of his own as I have learnt to enjoy the loneness. When not in pain, a little knitting, art, crochet, crosstich, reading. But only if my mind is not too exhausted and my hands aren’t too painful or swollen. Oh yes! Developed RA too over the last few years. I forget what’s wrong with me at times and get frustrated when I continually have to back down from something I have foolishly planned. It’s made me tough and determined and certainly not giving up! I have a
    strong Christian faith and I know God is far stronger than this and keeps me positive as I read my Bible when I can. Joy instead of misery, hope instead of a feeling of hopelessness. My constant companion!

    Liked by 1 person

  2. This is very true . Great article .i can relate to feeling alien and thinking that I am not in my body. I sometimes think it’s not me and that I am dragging several people behind me I am that tired. I am now gluten free,no processed food and have felt a little better . I am lucky I pace myself and still go to work even when I drag myself out of bed. I have to or life it not worth living. My heart goes out to all you who have severe ME. I sometimes feel like it’s a life sentence. My love to you all and continue to fight it’s all we have

    Liked by 1 person

  3. Great piece, I can’t imagine the suffering of those with severe ME. I see it as an entirely different illness to my moderate ME. The strength displayed by severe ME patients is astounding and reminds me my struggles are minor compared to them.

    Liked by 1 person

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