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Caring for Someone with Severe ME
"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".