Caring for someone with Severe ME

The relationship between you and the person with severe ME, must be be a priority in your life; you may be caring for decades, as there is currently no treatment, no cure and limited validation. This means that you need to understand the illness , what it is and how it affects the person.

This is going to take time; it will not happen overnight. It may take years, even to identify the symptoms and understand their impact. Also, it is going to be painful, as you try and understand the complexity of severe ME and its bizarre nature ; in relation to you as a carer, trying to help the person and the impact it has upon your lives.

The person with severe ME is not living in the same experience of the world as you are; this is so hard to understand and to deal with :

You are most likely going to have to work this out alone.

You are going to enter into some of the aspects of the person's experience; the disbelief, the disappointment, the negativity, the misunderstanding, the misinterpretation, the rejection.

You are going to have to become aware politically of what is going on, in order to survive.

You are going to have to fight your corner and the person's corner, even to get basic needs met.

You will have to become an advocate for yourself and the other person because ME is so poorly understood , often treated as a psychiatric illness rather than a true neurological, multisystem, dysfunctional disease.

The Stone Bird: The person with severe ME is not going to fit into standard procedures and practices, do not expect that it is going to be easy and expect that formal agencies are going to reach out and comprehend.

You really cannot assume that you are going to get the understanding, the acceptance, the medical and social support from family and friends that you would expect and should be entitled to and would get with any other illness.

If you are going to be the main carer for the person with severe ME, you have to make the choice between work and poverty and quality of life and your relationship with the person.

You need to accept the choices you make and look for the benefits you gain in loving and caring for that person.

There is a tendency, on behalf of professionals and well meaning others to be quite divisive and to client-ise patients and carers, rather than offer a holistic approach and understanding of what their need is. Do not give your power away to social workers, nurses, doctors, anybody. You work, live with the person, you do know better and trust has to be earned.

You will become greater than you ever thought possible, because you really do have to reflect upon what is important to you in your life and how to be empowered.

Severe ME : featuring Justice for Karina Hansen

“With unparalleled imagery and quotations the book describes like a surgeon what it is like to live a life as and with someone who is severely stricken with the devastating disease Myalgic Encephalomyelitis.”

Rob Wijbenga

The MOMENT Approach App

“All our experience, over two decades of living with and caring for someone with Very Severe ME, finds expression in the MOMENT Approach.”

Greg & Linda Crowhurst

(COMING SOON) Severe ME : Notes for Carers

Caring for people with at the severe end of the spectrum, can be extremely challenging to get right it requires a quantum leap in understanding.

Wanting to be me, not ME

With Hindsight : Things I would say to myself when I first got ill.: Linda Crowhurst

Dashed Hopes & Inappropriate Services

Price of Myalgic Encephalomyeltis.: Stonebird is immensely proud to publish Wendy Boutilier ’ s outstanding account of the physical price, those who suffer from ME pay.

House and bedbound does not describe Severe ME.

What is the word beyond unbearable ?

The role of the facilitator

Issues of Noise, Light,Touch,Chemical & Movement Sensitivity in Severe/ Very Severe ME that carers need to be aware of.

A Comet of Destruction by Sarah-Louise "Feather" Jordan An exquisitely beautiful, haunting account of the lived reality of Severe ME.

Living Death Disease by Sally Burch The best article we have read on Severe ME. Please read and spread widely.

ME poster

ME poster

Carer poster

Paralysis poster

Paralysis poster

This afternoon....

Journal Extract 1

CFS : a mechanism for wholescale neglect.

Failed by the medical profession.

The state of unutterable indescribable agony

: This is Severe ME : Chemical Sensitivity

: This is Severe ME : Movement Sensitivity

: This is Severe ME : Touch Sensitivity

: This is Severe ME : Light Sensitivity

: This Illness Inside of Me.

: This is Merryn, she is 17 and has Severe ME.

: I cannot begin to convey..

: The Poverty of Severe ME

: A desiderata for Carers.

: How to Protect Yourself.

: Risk Assessment in Severe/Very Severe ME.

: 55 reasons why it is difficult to treat someone with Severe ME

: 100 things you cannot do with Very Severe ME

: An holistic approach to caring for Someone with Severe/Very Severe ME

: Stonebird (informal) definition of Severe ME.

: For Nurses : an extract from " Severe ME featuring Justice for Karina Hansen"is available for free online.

: CBT and GET cannot and should not be used to treat the symptoms of ME

: Very Severe M.E.
seeing an invisible illness
is believing.
PLEASE READ
this extraordinary
photographic account.

: This is Severe ME :
Kara Jane Spencer.

Stonebird: The Lived Experience of Severe Myalgic Encephalomyelitis (ME)

Caring for someone with Severe ME

The person with severe ME is not living in the same experience of the world as you are; this is so hard to understand and to deal with :

You are most likely going to have to work this out alone.
You are going to enter into some of the aspects of the person's experience; the disbelief, the disappointment, the negativity, the misunderstanding, the misinterpretation, the rejection.
You are going to have to become aware politically of what is going on, in order to survive.
You are going to have to fight your corner and the person's corner, even to get basic needs met.
You will have to become an advocate for yourself and the other person because ME is so poorly understood , often treated as a psychiatric illness rather than a true neurological, multisystem, dysfunctional disease.

The Stone Bird: The person with severe ME is not going to fit into standard procedures and practices, do not expect that it is going to be easy and expect that formal agencies are going to reach out and comprehend.

If you are going to be the main carer for the person with severe ME, you have to make the choice between work and poverty and quality of life and your relationship with the person.

You need to accept the choices you make and look for the benefits you gain in loving and caring for that person.

You will become greater than you ever thought possible, because you really do have to reflect upon what is important to you in your life and how to be empowered.

Wanting to be me, not ME

With Hindsight : Things I would say to myself when I first got ill.: Linda Crowhurst

Dashed Hopes & Inappropriate Services

Price of Myalgic Encephalomyeltis.: Stonebird is immensely proud to publish Wendy Boutilier ’ s outstanding account of the physical price, those who suffer from ME pay.