Look after yourself.
Be kind and affirm who you are.
Be loving, especially to yourself.
Learn all you can.
Remain focused on the person, who they are and
do not forget this even when illness seems to deny it.
See the person but recognise their illness reality, so that
you can understand the impact on both your lives.
Take space for yourself to heal your own wounds and
Be gentle to yourself, especially when you
struggle to make sense of the illness and its impact.
Keep healthy by eating well and keep fit if you can.
Do things you like to do, but be flexible as to how and
when you do them; think in new ways.
Be together in whatever way is possible.
Do not let systems or people be divisive or come between you.
Do not “clientise” your loved one or let anyone else depersonalise them, so that your relationship stays strong.
Find ways of connecting as your essential selves.
Express your emotions safely.
Be all you know, in all you do.
Greg & Linda Crowhurst (c) 2014
1. Do not let yourself be perceived as helpless
or a victim.
2. Be careful whom you trust; make sure they are worthy of this precious gift.
3. Maintain clear boundaries between yourself and them especially if they are providing a service for you. They are not necessarily
4. Write down and record all agreements.
5. Be certain that if someone is speaking on your behalf, they actually represent you and not their own opinion.
6. Let go of people and things that demand you be other than who you are for their own purpose.
7. Be clear.
8. Understand ME politics and those who play within it. Understand their motivations, how and what they represent.
9. Find people who are congruent with your deepest values; check this is so, do not assume.
10. Be aware so you do not get caught up in other people’s Persecutor / Victim / Rescuer games.
Greg & Linda Crowhurst
Stonebird © 2014
It is a massive risk for anyone with Severe ME to let any medical professional into their life.
Our (painful) experience has taught us the importance of carrying out a Risk Assessment of the professional that the person with Severe ME is about to trust potentially with their life, to make sure they really know about Severe ME and how fundamentally physically ill the person is.
R.I.S.K A.S.S.E.S.S.M.E.N.T :
Respect :I need to feel you respect me and know how seriously ill I am
Insight :I need you to have insight and awareness into the physical dysfunction in Severe ME.
Sensitivity:I need to know that you will approach me with immense sensitivity taking account of my acute environmental hypersensitivity
Knowledge : I need you to have in depth medical knowledge of system dysfunction , investigations, tests, treatments and an understanding of how to aid me in accessing them
Awareness :I need you to show that you are aware of how you approach me and how easily I can be harmed by what you might suggest, because of my frailty and illness.
Sincerity :I need you to be focussed and sincere in your intent and ability to help me.
Stillness :I need you to be centred in stillness and be very aware of my needs and my communication difficulties and how you might unintentionally make me more ill
or increase my symptoms.
Empathy:I need you to try and understand my reality and relate to it in all you communications, your contact and any suggestions you make to help me, realising the need for flexibility in every moment.
Sharing :I need you to share your ideas with me and include me in any decisions, however complicated that may be to figure out, so that I know you have considered the risks to my heath and well being.
Sensible :I need your input to be sensible in terms of my physical reality not just yours, which is so very different to mine, so that it does not do harm to me under the guise of caring, yet not considering me in reality.
Mindful :I need you to be consciously aware of every interaction and its possible impact
Experience :I need you to have in depth medical knowledge and experience
Non- judgemental :I need you to see me clearly and understand my experience, not judge me falsely with psychosocial misinterpretations that negate me and my severity of illness.
Together :I need you to work together with me, not impose wrong treatment pathways and then blame me when you harm me or they fail.
Greg & Linda Crowhurst (c) 2014