THE STONEBIRD REVISED DEFINITION OF SEVERE 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 brutal and cruel 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 being unable to tolerate two-way conversation or anyone in the room at all.
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 unable to call out for help because you cannot speak.
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 and causes pain and worse, can paralyse you.
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 feeling you have suddenly disappeared from ordinary life and become invisible for ever.
Severe ME is being unable to travel without torment and deterioration.
Severe ME is being unable to articulate the sheer horror and intensity of suffering without relief.
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 may ave a better quality of life than you, almost until they die.
Severe ME is being frustrated by not being understood or recognised.
Severe ME is being hurt by 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 profund, isolating hypersensitivity.
Severe ME is being persecuted because you are disabled and ill.
Severe ME is having to buy your 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 head pain so intense you cannot bear any contact or pressure whatsoever.
Severe ME is where thinking is so painful that you simply cannot 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 frequently needing the toilet again and again.
Severe ME is needing total care day and night.
Severe ME is not being able to communicate your needs. Severe ME is not being able to do anything you hope to do, want to do or need to do, when you want to do it or at all.
Severe ME is broken connections to every conceivable thing.
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 almost everything is wrongly reduced to a fatigue state that does not resemble your life or your experience in any fashion.
Severe ME is where your paralysis is ignored, downplayed, denied and not fully investigated or explained in physiological terms.
Severe ME is where you simply are left without evidence of your nightmare physiological reality.
Severe ME is where you have to work it all out for yourself.

(c) Linda Crowhurst 2010/2018

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