I have cared day and night for my wife who has lain in unspeakable torment, torture and agony, for twenty-six years. The personal cost to us both because of M.E. has been enormous.
Communication is broken on every level. As soon as she has spoken, she forgets what she has said.
If I speak or ask a question it can cause unimaginable confusion and head-pain, shaking spasms, and deterioration.
Thoughts and memories are mostly beyond access. I must represent her and speak for her whenever the need arises.
Literally everything hurts her and risks deterioration to partial or total paralysis. One wrong movement or noise and the whole day is ruined before it has begun. People simply do not understand.
Who can possibly imagine living in such an assaulting and broken world for decades, without adequate investigation, care or support?
We receive no support from the Church or local community
We have had been forced to live below the poverty line
Society has lost out on our professional skills (I am an award-winning Nurse, my wife is a qualified Social Worker, Counsellor and Teacher)
We live in almost complete isolation, as my wife’s agony and hypersensitivities are so intense, that she cannot bear contact or interaction
We have not been able to have children of our own
I was in my 30’s when my wife became ill, shortly after we got married, I am now in my 60’s
We were both highly respected professionals, but I have openly been called a “waste of space” as a carer
My wife’s profound suffering goes unrecognised and ignored as if she does not exist
Nieces and nephews have grown into adulthood, married, had children who we do not know and who do not know us
Parents have got old and people have gotten sick without being able to visit them even when dying or to attend their funerals
We live in a hamlet, four miles from what is regularly voted the best beach in England. My wife has never even seen it, let alone put her feet in the endless sand, felt the sea splash over her toes, heard the pines whisper above the dunes.
Every aspect of care, including how and when I move, how and when I act, how and when I speak, not just in the room – for it still has impact in any part of the house – needs to be carefully thought through and brought into my awareness.
We can never do the things other people take for granted, like:
go on holiday
out for a meal
a coffee at a cafe
to see a band
for a walk together with the dog
play games, like badminton, tennis, or volleyball
walk hand in hand
have dinner parties
go to church, although our faith is immensely important to us
I have had to learn to take a Moment by Moment approach, to ensure the need is met in the right moment in the right way.
This is much harder than it sounds and needs the right attitude, a person-centred, partnership approach, understanding and focus.
My wife cannot:
read a book, play guitar, study or, learn
listen to the radio
follow conversation or engage in normal two-way conversation
have anyone in the house due to perfume, noise and movement sensitivity
tolerate virtually any contact at all
have anyone making noise in the room with her
bear even the simplest thing like having a cuddle or holding hands
find rest ever, for rest increases her physical suffering
Our days are spent, without exception, struggling to cope from moment to moment in the most awful suffering anyone could imagine; except you couldn’t possibly imagine just how bad it is.
People I have known, dying of cancer, have still enjoyed a better quality of life than my wife. I simply cannot bear the thought of anyone else with M.E.:
having to endure the agony, the mistreatment, the abuse of power, the misrepresentation, the incompetence, the ignorance, the denial, the lack of accountability, the not being able to access safe, aware, medical advice or tests that would help show up the physiological dysfunction, the physical harm, the ongoing suffering that has no end in sight, down all these many years.
having to cope, as we have, somehow, from the devastating consequences of wrong treatment that caused an irreversible deterioration.
having to fight, as we have, every step of the way against the Establishment’s entrenched psychosocial mind set.
It is surely time for a quantum-leap change in attitude towards identifying, investigating, testing, diagnosing and supporting people with M.E.
It is surely time to stop using the label M.E. to mean anything other than the specific disease Myalgic Encephalomyelitis, classified by the WHO as a neurological disease and with multi-system dysfunction.
It is time to stop the misuse of the name Myalgic Encephalomyelitis to mean an umbrella term, incorporating a wide range of unidentified conditions and illnesses including mental health conditions and/or those either referred to as idiopathic chronic fatigue or medically unexplained symptoms (MUS).
It is vital that those who are most ill – especially the estimated 2% of M.E. patients diagnosed with Very Severe M.E. – are recognised, kept safe from wrong treatment and misinterpretation, protected from further deterioration or needless suffering, and cared for in the most appropriate way.
It is surely time for the creation of an appropriate medical pathway that honours the person and their disease. We need something new!
Response to BACME (British Association for ME/CFS) Working Group on Severe CFS/ME Shared Clinical Practice Document Version 1 When you work with someone who has Severe ME you need to be more sensitive and aware than you can possibly imagine. Harm, even death for some, may follow poor treatment, care and ignorance. The frailty of someone with Severe/Very Severe ME cannot be exaggerated nor adequately described. You need to take the greatest of care. The problem with this BACME document is its underlying psychosocial values and attitudes. If you expect a person to get better, that will be your intention, that will be your goal, that is going to influence all your thoughts and actions in your caring role, especially if you set goals or limit care over time. The care provided by someone with a biomedical understanding of Severe ME is going to be funda-mentally different, however much the starting point of care might appear to be similar in this document, to the person who h
Pity Franz Kafka, who wrote to his love, in 1920 that “I’m mentally ill, the disease of the lungs is nothing but an overflowing of my mental disease.” (Sontag 1978) He actually had Tuberculosis. How awful it must be to have lived with the burden that you have been told that are severely sick because you think you are. (Sontag 1978) Pity Napoleon, Ulysses S. Grant, Robert A. Taft and Hubert Humphrey, whose cancer “was diagnosed as the reaction to political defeat and the curtailing of their ambitions. How awful it must be to be seen as a “cancer personality”; as a “loser”. These days, it is incomprehensible that TB and Cancer were once seen as a mental illness! But how can it be that the WHO classified, yet poorly understood physical disease, Myalgic Encephalomyelitis, a disease that places a greater physical burden on patients than schizophrenia, cancer, stroke, multiple sclerosis and Type I diabetes, (Johnson 2015) is widely regarded as mental illness by medicine, when there i
1. Severe ME is unlike anything else you have come across. Just about all you think you know will be turned on its head. Do not, for one moment, ever think you know better than the person. It is extremely unlikely you will even begin to grasp the depth and breadth of what the person is going through, they are so unimaginably profoundly ill and disabled, so you must, gently and always in partnership with the person, respond accordingly. 2. At all times, be aware that if you get it wrong, you may cause catastrophic harm. You can never, ever afford not to be aware of the potential impact of your presence, your movement, any perfumes on your clothes, the slightest noise you make, even your energy levels. You are going to need to learn, on multiple levels, the best ways to be with that person, so that you do not make an intolerable situation much worse. 3. Everything depends on how well you communicate with the person. You must learn how the person communicates and how YOU must communicat