The Stonebird (informal) Definition of Severe ME

The Stonebird (informal) Definition of   Severe ME :

permission to repost

• 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.

Linda Crowhurst

15th July 2010