Severe/Very Severe ME BRAVERY IS REQUIRED

Bravery is required:
* To keep going when you feel like despairing,when there doesn't seem to be any hope of things getting better, of a clear way forward.
* To dare to stand up against any system that tries to deny or bury the truth of the physical seriousness of this disease.
* To advocate for your loved one, to find the self confidence to speak up and keep speaking up year after year.
* To look beyond the dreadful suffering to see the person you love fighting against the illness to still function and maintain their self-integrity and identity while it is being daily stripped away by the illness.
* To give up your job and all you used to hold dear are in the world so that you can give the one you love the best care possible and the most comfort possible.
* To learn and grow in spite of the suffering you both experience.
* To believe in your marriage, your relationship still and to refuse to let it disappear and be destroyed by the complexity of daily living, the massive losses you both experience and the untold suffering your love endures.
* To stay and care when everyone else leaves
* To keep pushing to get a proper medical service, even when it does not exist.
* To keep believing in love and goodness and not get worn down.
* To keep imagination and hope alive, when you are distressed and exhausted and struggling to cope.
* To do things by yourself and find meaning when you hoped you would do those things together.
* To look at the pain of your loved one day after day, down the decades, with no relief and still love them.
* To choose to be bigger than the illness and to keep fighting for a better day.
* To find hopes and dreams in a reality so stark, there couldn't possibly be any.
* To wake each morning with enthusiasm and excitement for the day.
*To say you will stay and care.
THIS IS AN EXTRACT FROM MY NEW BOOK : "MORE NOTES FOR CARERS" WHICH I AM WORKING HARD ON.

Comments

  1. Lauren GoldsworthyJune 17, 2021 at 12:02 PM

    Hope comes from even the simplest of things in life. Greg, you've given the entire ME community hope in the most simplest forms. Truly a masterpiece collection of simple illustrations and information to convey the severity of severe ME, and everyone effected by this. I truly don't know how to thank you enough for all your hard work and love you have poured into each bit of work, for all of us involved in the decades of deep neglected suffering. You have given us all a little bit of light. Created perfect notes for carers to grasp the severity in simplistic accurate ways. Thanks so much. You're a truly appreciated.

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