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...
It has been hard for me to explain that an "assessment for services" can make me ill and i am not able to explain myself anyway. I have trouble using phone, answering questions but everyone expects me to speak for myself. I have been ghaving home care for 14 years so there is already information on file. Its just managers getting paid to fill in forms but no-one to take the time to learn about the condition and act accordingly,
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