Factsheets and leaflets
Care for Someone with Severe Myalgic Encephalomyelitis
We are delighted to announce that the paperback version of Care for Someone with Severe ME by Greg Crowhurst is ready and available to purchase from the Stonebird website at the following link:
http://stonebird.co.uk/Notes/index.html
Greg explains further below:
It has also been published in eBook format. Also, mindful of how difficult things can be, I have made the whole book free to read online; I want everyone to have easy access to it.
There has never been a more pertinent time to be raising awareness of the reality of Severe ME, witness the unfolding events in Denmark where a young woman with Severe ME faces the threat of being forcibly removed from her home and consigned to a psychiatric ward. One thinks of the terrible experience of 25% Group members, who have also found themselves locked up in secure wards and of course Sophia Mirza.
To my great concern, here in the UK, I see middle of the road medical teams and researchers – who profess to be biomedical, still following a psychosocial interpretation, still using the same old fatigue language, still not challenging the establishment, still compromising ME away, still hindering genuine knowledge, still making the person with ME wrong, rather than looking to their own inadequacies, their lack of knowledge and disrespect for the true nature and symptoms of ME .
There is a shocking willingness in the medical and research fields to accept that psychiatry has the right to be involved with ME, a complacent willingness to call ME a fatigue condition, a willingness to blur boundaries that should be crisp and clear and separate, a willingness to accept psychiatric interpretations, a willingness to call illnesses that are not ME, “ME” – and to call ME, “CFS” .
These “compromisers”, high profile in some cases, are just as dangerous, in my view, as the hard line psychiatric lobby; for they are still busy throwing away the truth of ME for some other prize whether that is financial gain, funding, security, status or just ignorance.
The word “fatigue” is not appropriate for ME.
During the course of writing my book three young women with Severe ME, including Emily Collingridge, died. My wife, seriously ill and now greatly deteriorated, does not want to die too, just because not enough people have the guts to challenge the psychiatric lobby, not enough professionals have the integrity to challenge government policies, attitudes, wrong health service provision and assumptions and not enough ME organizations are really representing people with ME.
The voice of truth is desperately needed, in these dangerous times for people with Severe ME. ME is not fatigue, this book shines a light on the reality of the WHO neurological disease Myalgic Encephalomyelitis.
Five Important Lessons worth Learning when Caring for Someone in Severe Pain with Profound Hypersensitivities.
When you help someone in severe pain, unable to communicate easily, with severe hypersensitivities to ordinary environmental things like sound, light, movement, smells, physical contact or your presence, then you need to understand the following:
- Do exactly as you are asked to do things, at the exact time that you are asked to do them, in the exact way that you are asked to do them.
The person you are helping may not react the way you expect, when trying to help them especially if you mistime or fail to help in the right way that they need. They may, as a consequence, deteriorate physically, making help impossible to repeat or try again, meaning the need may end up going unmet in that moment. They may respond irritably or cry out.
- Do not take it personally, but maintain a sense of boundary between yourself and the person, which enables you to see clearly under pressure and understand the difficulty the person is having with the way you are interacting.
Take responsibility for your own actions and their impact; this is such an important awareness to develop.
- Do not blame the person, if you get it wrong or if they are unable to tolerate your presence at any given moment.
This is the time to wait for the right moment in order to re-engage to meet need tenderly and help them feel you know what to do and how to do it. Great kindness, awareness, compassion, patience and skill are required.
Learn how to wait till any interaction or intervention is tolerable or acceptable to the person.
- Just because something, in front of you, looks quick, simple and easy to do, because for you it takes no effort, does not mean that the person you want to help can equally tolerate it.
This is where great patience and understanding are required. This is where how you care becomes vital.
There are so many aspects to an action that you may not notice or be aware of yourself, which will be painfully obvious to the person and may be impacting the person negatively.
Even doing what may seem to you like something small, simple and unnoticeable, such as scratching your head, shutting a door too loudly, switching on a light briefly, picking something up in a way that seems quiet to you, going to fetch something,may still unintentionally, endanger health or increase the level of pain, cognitive dysfunction, confusion, exhaustion, weakness for the person.
Make sure that you are not putting additional obstructions in the way of meeting need by meeting your own need to feel that you are ‘doing something’ when that ‘something is not wanted or tolerable and will make things extra hard to get vital help.
- Understand that the environment, itself and you, yourself, within that environment are constantly, invisibly impacting the person, even if you are not noticing it.
Every action, movement, sound, change, that you bring to the person’s environment can, in theory, be positive, neutral or negative. Never be complacent about this; keep developing your awareness as much as you can, it is crucial.
It is vitally important to learn as much as you can about how the person’s symptoms impact them, how severe each symptom is and how much worse it can be made, accidentally, even with the best will in the world.
Understanding and awareness of how each moment can be a moment you help or hinder the person, is key to providing sensitive, aware, person-centred care.
So try to be the best carer that you can be. Learn and grow together, remembering every noise, every movement, every action that you make, matters more than you will ever be able to fully understand.
Greg and Linda Crowhurst
October 2018
Stonebird
For much more information on how to care for someone with Severe/Very Severe ME please see :
BOOKS :
CARING FOR ME https://stonebird.co.uk/CARE/index.html
SEVERE ME, NOTES FOR CARERS https://stonebird.co.uk/Notes/index.html
MOMENT APPROACH :
THE PARADOX OF CARING FOR PEOPLE WITH SEVERE ME : why a MOMENT APPROACH is necessary.
http://carersfight.blogspot.com/2018/12/the-paradox-of-caring-for-people-with.html
UNDERSTANDING THE POLITICAL BACKGROUND:
Straight-jacketed by empty air https://stonebird.co.uk/emptyair/sj.pdf
CARERS UK NEWS
Manifesto for a society that respects, values and supports carers
(carers UK website 5/11/19)
Carers UK has published a manifesto for carers calling on all political parties to commit to improving the lives of the UK’s 6.5 million unpaid carers.
The membership charity is calling for the next government to change the way our society supports and recognises carers, so that they can continue to care for family and friends whilst also living a fulfilling life.
Nobody should suffer financial hardship because of their caring responsibilities, and people juggling care with paid work must be supported to remain in work if they wish to.
Carers UK wants all political parties to commit to putting unpaid carers at the heart of a reformed and sustainable adult social care system.
The manifesto includes seven priorities for unpaid carers. These priorities are based on years of evidence, consultation and involvement with unpaid carers, including more than 7,500 carers who completed our State of Caring Survey 2019.
Read about the seven priorities at:
The time has come for a new social contract between carers, public services, employers, and wider society to achieve this vision of a society that respects, values and supports carers.