DO NO HARM, DO NO BETRAYAL
By Diane I'm not sure where to start but this is my story so far. My name is Diane and I'm a carer for my adult daughter, Lili, who is completely bedbound with very severe myalgic enceplalomyelitis. For Lili, M.E. didn't come slowly. It very rudely crashed into her life and very quickly stole her health, taking bigger and bigger chunks of it as she deteriorated. It all began when she experienced a gastric-flu virus of a sort she had never experienced before because this time she never regained her health. A couple days later, she woke up with agonising head pain 'like her brain was on fire', with severe neck pain – she also couldn't move her neck, and her whole body was paralysed. She's not sure how long she stayed like this as she was in and out of consciousness but she truly felt that she was going to die because her body was undergoing an extreme crisis. To cut a long story short, it took a year to get a diagnosis durin...
the music is very difficult to listen to if have severe m.e. - but the harsh discordant monotony of it perfectly encapsulates the dark painful never ending hollow your brain and body inhabit when you have m.e. at it's worst. - when senses are on serrated knife-edge, when every part of you is consumed in pain, when you can't even think or make sense, or bear it, but you have to. it's very touching Greg, that you are able to express in music that which words can never fully describe. gentle love and care to you both.
ReplyDeleteThank you, thank you, so much xxx
DeleteBeautiful and Moving....
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