Journal of IiME Volume 7 Issue 1 Lili – Diane’s Story An ME Carer’s View I'm a carer for my adult daughter, Lili, who is completely bedbound with very severe myalgic encephalomyelitis. 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 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 during which time she literally dragged herself to doctors and hospital appointments to undergo tests and consultations (which were sometimes more like inquisitions from paid torturers). Although Lili was severely affected and completely housebound from day one, she forced herself to go because she so desperately wanted to know what was wrong with her so that she could have treatment and get on with her life again. However each visit and test pushed her body beyond its limits. She was gradually deteriorating. Every tiniest activity (physical, cognitive and sensory) from washing her hair to rubbish collection day, had devastating results. Sometimes she could recover in a few days, other times it would take months, but often the cumulative effects of the noisy, smelly, bright, sunny, loud, vibrational, fast, chemical based world we live in were all too much and disease progression with permanent damage resulted. Doctors always amaze me when they are puzzled by her severity and wonder why it's taking so long to 'pick up her bed and walk'. Invest in ME (Charity Nr. 1114035) Lili collapsed after her last hospital visit. She passed out with a seizure, her body violently shook, and paralysis spread throughout her body. It was an extreme reaction to the overload of physical, cognitive and sensory attack on her body during that year, but this last journey to the hospital was the straw upon the last straw that broke her body down. She never recovered. My beautiful daughter is totally bedbound. She has a diversity of symptoms that seem endless. (Most of the very severely affected have between 60+ and 100+ symptoms). The worst thing of all is the relentless, agonising pain. Widespread pain in every muscle, joint, and organ possible. She has not had one day free from pain since the illness began. Her whole life now is lived from her bed. Not her choice for she is a talented artist and photographer and she dreams of being in summer meadows photographing the dancing bees and butterflies and painting the colourful flowers. She dreams of baking cupcakes. She dreams of completing her geology degree. She dreams of paddling in the sea with her nephew. She dreams of putting on a pretty dress with her hair all beautified. Such simple dreams. Her dreams have been snatched from her by this awful disease that others misunderstand by thinking it's just about feeling tired or attention-seeking. The above are some of Lili's dreams but in reality, she would just love to be able to do some of the everyday things that others take for granted. Lili longs for simple pleasures such as having a bath, cleaning her own teeth, reading a book, eating a plate of solid food, emailing her friends, cuddling her nephew, having a conversation, going to the toilet rather than using a slipper-pan, and having a hug. When I hear people moaning about having to stand in a queue, I think 'my daughter would love to do that' (not the moaning bit)! To be able to get up, have a shower, get dressed, walk, travel, shop, interact with the environment, have a conversation, and stand in a queue are such blessings that people www.investinme.org Page 18 of 36 (May 2013)
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