Journal of IiME Volume 7 Issue 1 forget they have. And to be able to do all this without unimaginable pain is a further blessing. My amazing daughter has such a positive view of life. I'm stunned that she's not depressed or angry. Although she sometimes has her low days, her courage and inner strength are immeasurable. Not a day passes without seeing one of her magical smiles which sometimes just breaks my heart. Her days are spent in a darkened room and in as much silence as the outside environment will allow. She is hypersensitive to light, noise, odour, vibration, touch, movement, chemicals, some foodstuffs, and medicinal drugs. She can hear a vacuum cleaner five houses down the road, smell the fabric softener on people's clothes and feel the vibration of a humming fridge. All these things can send her body into a crash at any time. She is unable to sit or stand due to being moribund with pain, orthostatic intolerance, paralysis, blackouts and much more and so her bed is her companion twenty-four hours a day. She is unable to chew and has swallowing difficulties so her food is liquid or puréed. She cannot tolerate touch as her skin is always 'on fire' like it's been grated with a cheese grater. Her description. I have to cut her pyjama tops off (when she can tolerate a change of tops) because any movement causes her indescribable pain. She has difficulty speaking sometimes and so asks me to be her voice... "My amazing daughter has such a positive view of life. I'm stunned that she's not depressed or angry. Although she sometimes has her low days, her courage and inner strength are immeasurable. Not a day passes without seeing one of her magical smiles which sometimes just breaks my heart." I do my best to protect her from noise, light, odour, vibration, movement etc within the house to minimise the damage to her health. I pick up the pieces after a visitor has long gone, desperately trying to create a place of healing safety for recovery to occur and to reduce her recovery time. However, I Invest in ME (Charity Nr. 1114035) (May 2013) am limited to protecting her from the outside world - aircraft, motorbikes, fireworks, DIY, sunshine, heat, barking dogs, roadworks, lawnmowers, parties, environmental smells...the list is endless. Another thing that I try to protect her from is people's attitudes towards her illness and therefore, towards her personally. Sometimes these misunderstandings and judgemental opinions come knocking at your door. Last year we had to move house. There was no choice. Lili and I knew that it would be a huge cost to her health and in the back of our minds, we knew (but didn't verbalise), it could have taken her life too. It didn't but it came very close. With a move comes new doctors. I registered us both at the local surgery straight away and booked a home visit. I won't go into details but the GP was an aggressive rude man who insulted Lili to such a degree that I wanted to throw him out. I remained polite but firm. The next time I called the surgery I requested a different GP. She came as if she had already prejudged us. The doctor was very keen for Lili to do GET. Lili declined stating her reasons. A couple of months later there was a knock at the door. It was a social worker. One of the doctors (who wished to remain anonymous) made an allegation of abuse/neglect. I was in a state of shock and felt sick to my stomach. To hear the words 'suspected of abusing your daughter' is something that will haunt me for the rest of my days. The accusing doctor said that Lili was 'being kept in the dark', 'not allowed to speak', 'nursed in bed for 24hrs for 3 years', 'denied hospital appointments'. The film, Whatever happened to Baby Jane?' springs to mind doesn't it! The case is still ongoing. Lili and I were hurled out of our safe world into the jaws of ignorance and betrayal. The bond of trust between patient and doctor had been shattered. It was obvious that the accusing doctor had no basic understanding of M.E. (let alone very severe M.E.). No understanding of light sensitivity and the fact that this group of patients are unable to get out of bed and so they certainly cannot travel to hospital appointments. The extent of this ignorance in a doctor is just frightening. The fact that they have not kept up their medical knowledge is cause for grave concern. The carer of an M.E. loved one is like no other carer. Not only is it imperative to learn about myalgic encephalomyelitis in order to give the specialist care required for M.E. (to avoid causing them further www.investinme.org Page 19 of 36
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