A definition of ME
Severe ME is a hellish experience that you live and endure without treatment, cure or respect .
Severe ME is not knowing how to cope from minute to minute, moment to moment.
Severe ME is being tormented by people doing ordinary things.
Severe ME is being inhibited by paralysis.
Severe ME is being totally ill, all the time.
Severe ME is being unable to read.
Severe ME is being unable to hold anything.
Severe ME is falling over regularly.
Severe ME is your mind not working.
Severe ME is being unable to speak on the phone.
Severe ME is finding that going to bed makes you feel even more ill.
Severe ME is discovering that there is no possibility of rest, ever.
Severe ME is being unable to see anybody because they make you more ill, because you are so hypersensitive.
Severe ME is not knowing what to eat that won't hurt you.
Severe ME is being neglected by the Health Service.
Severe ME is having to regularly have to prove you are ill, just to get your benefits.
Severe ME is being always in constant pain.
Severe ME is finding that everything you try to do hurts you on some level somewhere.
Severe ME is feeling dizzy and disorientated most of the time.
Severe ME is spending your life predominantly sitting in a chair unable to move or function , or in bed, paralysed.
Severe ME is being not properly medically tested.
Severe ME is being unable to find any clothes that don't itch you.
Severe ME is being unable to go to the shops to buy clothes.
Severe ME is finding that any noise irritates you to distraction.
Severe ME means that your mind lives in a sea of fog and emptiness.
Severe ME is finding that everything normal is out of reach.
Severe ME is being unable to manage without help, all day long.
Severe ME is having no energy.
Severe ME is living in poverty.
Severe ME is being unable to decorate because you are chemically sensitive and the paint would make you more ill.
Severe ME is being unable to tidy away the things on your desk or sort anything out because it's too complex functionally for you to do.
Severe ME is being unable to carry things.
Severe ME is finding that everything in your world is hurting you , both inside and outside you.
Severe ME is being unable to travel without torment.
Severe ME is finding that motion makes you ill.
Severe ME is having no real choices , apart from not to despair.
Severe ME is a torture and a nightmare.
Severe ME is constantly feeling as if you are screaming with agony inside.
Severe ME is being more sick than an AIDS patient two months before death.
Severe ME is noticing that people with terminal cancer have a better quality of life than you, until they die.
Severe ME is being sick of not being understood.
Severe ME is being sick of the denial of your reality.
Severe ME is weeping everyday with the sheer physical pain of your life.
Severe ME is having all the things you love taken away from you.
Severe ME is being unable to bear being touched because of the pain and irritation that it causes.
Severe ME is your body going dead and numb regularly, awake and asleep.
Severe ME is having skin that crawls with intolerable sensations.
Severe ME is being cognitively disabled.
Severe ME is finding that anything you do will lead to worsening pain, paralysis and numbness.
Severe ME is feeling like you are dying.
Severe ME is having your illness misrepresented and negated by a powerful psychiatric lobby that denies the physical reality of your neurological disease.
Severe ME is finding that there is no one with any power or authority doing anything to change it.
Severe ME is being enraged by the untruths that exist about ME , that are accepted by professionals and society.
Severe ME is finding that your hypersensitivity is increasing.
Severe ME is being persecuted because you are disabled and ill.
Severe ME is having to buy own nutritional medicine and organic products; you cannot live cheaply as a disabled person.
Severe ME is never going on holiday
Severe ME is never going to social or family events.
Severe ME is having to fight for everything that you should be entitled to.
Severe ME is a desperate thirst that is unquenched.
Severe ME is an extreme head ache that goes on and on, throbbing unceasingly, day after day, and all night without relent.
Severe ME is where thinking is so painful you can't do it.
Severe ME is going to sleep and waking up worse.
Severe ME is having no energy to start with.
Severe ME is struggling to breathe.
Severe ME is struggling to eat because chewing is exhausting and swallowing is dangerous.
Severe ME is struggling to live.
Severe ME is numb eyeballs and itchy, burning eye pain and scratchy dry eyes.
Severe ME is not being able to read because the letters are dancing in and out and up and down and there seems to be two of everything.
Severe ME is where words lose their meaning and comprehension disappears and is replaced by tormenting pain in your head and worsening pain in your body instead.
Severe ME is emptiness in your mind where colour and thought once existed.
Severe ME is sleeping all morning and awake all night.
Severe ME is needing the toilet again and again.
Severe ME is a bizarre world where nothing seems as it is and every reaction is opposite to what you would expect.
Severe ME is where no one tells you what is going on in your body, to make sense of all the symptoms .
Severe ME is where you have to work it all out for yourself.
I have had the privilege to walk the journey with a young woman who just turned 30 in hospice care for ME. I saw her struggling pre-diagnosis when no one believed her complaints and thought her a hypochondriac and/or malinger. She had to fight for every doctor call, bit of compassion and help that she got. She even trained her greyhound to be a therapy dog who has cared for her until she got hospice. When friends and family did not believe her, she silently grieved but she never quit. She is an example to all who are lost in the "ego" of medical providers who do not grasp the diagnosis of ME and/or hold to their prejudices. She was diagnosed with many things before her ME was confirmed. She could have had a better course of treatment and pain control had they not bounced her back and forth between providers. Thank you so much for this wonderful and definitive article of ME. Now if we can just get it out there for others to educate themselves; be they professionals or caregivers. Keep sharing, please.
ReplyDeleteThank you so much Joyce, the struggle is to get the truth of the real disease out there. The suffering is immense, the neglect, disbelief and abuse shocking. My wife Linda has encountered all you describe over the last two decades of Severe and now Very Severe ME, her life is one of indescribable agony - terrifying physical symptoms, just left to cope and manage with no specialist medical input. ME is a tragic story of powerful vested interests and psychiatric ideology . The consequences are a nightmare !
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