Barriers to Connection


There are many barriers to getting physical help, when you have Severe or Very Severe ME. What SHOCKS us is how little the issues below are recognised, understood or thought through by Professionals and Services.
This list is from my new book, “Severe ME More Notes for Carers” :
How can you wear comfortable clothes that you feel good in, if the material on your skin irritates, hurts, feels as if it is you crushing you?
How can you protect your feet or find suitable footwear when any pressure on your feet is agony?
How can you keep warm in bed if the lightest sheet over you hurts you?
How can you cover your eyes to protect yourself from light, if you cannot tolerate sunglasses on your nose or eye masks on your face?
How can you protect against torturing sound, if you cannot put earplugs in your ears, due to the pain of pressure in your ears or wear ear defenders on your ears or cope with the pressure on your head, due to hyperesthesia?
How can you get back or neck support to help you sit up supported, if you cannot tolerate touch or pressure?
How can you lie in bed when the pillow pressure causes massive pain against your head?
And how does the person, who does not fit neatly into any regular system, because they do not have the standard average, usual, general issues that people experience, in the same standard way, get their complex needs recognised or met?
There are no easy answers.
More Notes For Carers
More Notes For Carers
“Compassion, faultless knowledge, decades of shared experience are all in this book. I wouldn't hesitate to recommend this beautiful work of love. 


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