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

Comments

  1. AnonymousAugust 1, 2010 at 8:15 AM

    Well maybe its time this bloody government stopped wasting BILIONS on benefits for the perfectly healthy who are too lazy to work, on wars that no one wants, and trillions on banks. More money for research to understand this illness, both its physiological and psychological symptoms, as well as triggers. Learning how to adapt life to reduce the effects (a process that for a sufferer may take years, but bring great benefits). Possible reversal/reduction of symptoms througn non-drug based means (this again may take years but bring great benefits).

    We do not fully understand this condition, so how can we hope to cure it or reduce the suffering.
    The banks were bailed out to the tune of a TRILLION pounds of taxpayers money. Only 0.1%, a thousandth, of that, ie a BILLION pounds, spent on a 25 year research ane wellfare programme for sufferers would bring great benefits and further our understanding of the human mind as well as the molecular biology associated with an aunderstanding of natural (ie released by the body itself) psychoactive drugs in the brain.

    Dr.L.K. Robins

    (I know it says anon above - I did not want to link to a URL etc...)

    ReplyDelete

Post a Comment

Popular posts from this blog

When I am 64 and other false positives : The PACE Trial.

Image
Greg Crowhurst 6 th February 2013 “Much of what we think we know based on conventional statistical studies published in the academic literature stands a good chance of just not being  so “  Roger Pielke Jr http://rogerpielkejr.blogspot.co.uk/2012/03/false-positive-science.html Imagine  I am a psychiatrist and for £5 million, say ,  I want to prove that CBT and GET are a safe and useful treatment  for ME. The good news is “ how unacceptably easy it is to accumulate (and report) statistically significant evidence for a false hypothesis ,  according to Nelson and  Simonsohn (2011).  Their frightening  paper “ False-Positive Psychology, ” shows  how  “ undisclosed flexibility in data collection and analysis allows presenting anything as significant ,” .  In fact Nelson and Simonshon statistically  “prove” that listening to “ When I am 64 ” by the Beatles can   make you a couple of years young...
Read more

Paralysis, a qualitative study of people with Severe Myalgic Encephalomyelitis

Image
Greg and Linda Crowhurst (August 8 th 2013). Synopsis Paralysis is a symptom that is rarely highlighted in the literature for ME, yet is found amongst the most severely ill ME population and even some of those not so severely affected. My wife has experienced it for almost 2 decades, without adequate exploration, alongside exposure to denial and dismissal, ignorance and neglect as well as harmful treatment. We wanted to find out if there was anyone else with a similar experience to my wife's or if she was a rare and very severe case. We wanted to highlight the seriousness of this symptom and ask why it is being ignored and down played not only by the medical profession, with its inappropriate focus on fatigue and the psychosocial response, but also by the main charities, none of whom, flag it up as a main symptom. This qualitative research study indicates that there are significant others experiencing apparently similar paralysis and that my wife is not un...
Read more

DO NO HARM, DO NO BETRAYAL

Image
By Diane  I'm not sure where to start but this is my story so far.  My name is Diane and I'm a carer for my adult daughter, Lili, who is completely bedbound with very severe myalgic enceplalomyelitis.  For Lili, M.E. didn't come slowly.   It very rudely crashed into her life and very quickly stole her health, taking bigger and bigger chunks of it as she deteriorated.  It all began when she experienced a gastric-flu virus of a sort she had never experienced before because this time she never regained her health.  A couple days later, she woke up with agonising head pain 'like her brain was on fire', with severe neck pain – she also couldn't move her neck, and her whole body was paralysed.  She's not sure how long she stayed like this as she was in and out of consciousness but she truly felt that she was going to die because her body was undergoing an extreme crisis.  To cut a long story short, it took a year to get a diagnosis durin...
Read more