Waiting and hoping

I spend my day waiting

Waiting for the paralysis to lift
Waiting for the pain to decrease
Waiting for a moment when my brain might clear
Waiting and hoping that I will be able to bear you in the same room as me
Waiting and hoping that you won't make a sudden noise or movement that will tip me into torment and irritability
Waiting and hoping that you will be able to speak to me and I will be able to listen and not react in agony

Praying that the jets won't fly and the noise instantly paralyse me and hurt me
Praying that the neighbours will not speak loudly through the wall

Hoping there will be no building work or lawn mowers in the vicinity of my house to torment me
Hoping I can claw myself out of the hole which twenty years of constant allover pain and daily recurring paralysis and a host of other complex symptoms has forced me into
Hoping I can win the battle against noise that dismembers me,attacks and destroys me moment from moment without warning
Hoping that the fog in my mind will clear so that I can picture images and ideas and comprehend information, even simple stuff
Willing my teeth to stay pain free and not require treatment that is impossible to access
Desperately hoping that nothing will go wrong with my body that requires outside help

Too ill to see anyone
To ill to cope with noise
Too ill to cope with two-way communication
Too ill to cope with physical contact
To ill to deal with questions
Too ill to deal with finances
Too ill to risk physical investigation or treatment even at home Too at risk of harm if exposed to ordinary environments, to chemicals, to perfumes, to fumes, to chatter, to ordinary people doing ordinary things, to conversations, to banging and clanging, to touch or laughter even
Unable to communicate my physical reality or the danger ordinary things expose me to

 I live, vulnerable to misunderstanding, to misinterpretation, to mistreatment, to ignorance, to neglect, to harm, to hurt, to abuse, to misrepresentation

Mostly I live in empty spaces, in empty places,
too ill to move, too ill to explain,
too ill to convey my reality,
too ill to be seen, literally tortured, in agony, from noise and every day living in every moment I exist,
too easily misunderstood and
too ill to participate in research, attend clinics or see specialists, to be exposed to tests, even ones I need.

Certainly not represented by most organisations that say they represent ME, yet who only represent fatigue, who do not comprehend the slightest reality of paralysis and all the multitude of tormenting severe symptoms people with genuine very severe ME have.

The days are stultifying, the grief of countless losses piles up and topple over again and again and again down decades And still there is no genuine hope, while people talk of bicycle tests and activity management, exercise and cognitive behaviour therapy. Really?

While no one investigates my body and what is really going wrong in it and all that is left is theories, ideas and beliefs which dangerously get enshrined as truth And its all written off as a vague fatigue condition with not much really wrong. And all my symptoms are dismissed and swept under the carpet by the fatigue lobby

And that is not just psychiatry sadly, it's a whole host of other people who should know better, consultants, doctors, nurses, social workers, carers, patients even and all the people who accept it unquestioningly and go along with it, way too many unfortunately. If it wasn't so utterly devastating, damaging, serious and real, you might joke about the incongruence of it all.

Instead it's a life sentence, of unimaginable torture, necessary isolation and neglect caused by deliberate ignorance and misdirection, sadly perpetuated by people with power, who do not know, who cannot understand and who should not speak for us and should not be involved with us or claim to represent us. Yet sadly do. Only those who know from the inside about the reality of people with the most severe ME should speak about it, only those with true understanding. And that is way too few.


  1. Dear Greg and Linda,

    Thank you for yet another breathtakingly accurate post on the experience of those of us who suffer with severe or very severe ME. Your efforts at educating the public do not go unheard! Keep up the great work. I continue to hope one day the truth of this illness will be more widely known so that those of us suffering can finally get the help we need. Blessings to you both!

    1. Brooke - thank you for ALL your encouragement and support. Linda in absolute agony.

    2. I'm so sorry to hear Linda is suffering extra badly today. Hoping and praying for some relief soon, for both your sakes!

  2. Another who wanted to say how very grateful I am for what both of you have done for those with severe ME. You are amazing people who deserve a Nobel prize for compassion. Sending prayers to Linda.


  3. Dear Jan, that means a lot to us, thank you ! Bless you. xGreg


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