My brilliant and beautiful daughter was stricken with ME\/CFS in college. Ten years later, she is mostly homebound, suffering every hour of every day. \u00a0As her caretaker, I must do all the shopping, cooking, cleaning, and laundry. I must help her with showering and dressing.<\/p>\n
My daughter has lost everything to this disease \u2026 a career, friends, family gatherings, and so much more – even going outside. My own career has suffered as so much time is needed to care for her.<\/p>\n
She has multiple severe chemical sensitivities. Just last week we had a visiting nurse come. Prior to coming to the appointment, the nurse was asked to use no fragrance, no hair spray, deodorant, etc., but upon her arrival it quickly became apparent that she had not adhered to this request. When the nurse walked in, my daughter began to vomit. The nurse had washed her clothes in Tide. This gives you an idea about how sensitive patients are to so many things. Going to a doctor’s office with its smells and noise and lights can send my daughter into a relapse.<\/p>\n
It would be great to work with an occupational therapist (OT) to assess our home and make suggestions about the ways in which my daughter\u2019s activities could be less stressful. For example, I recently bought a faucet that can be turned on by tapping it anywhere. This saves my daughter from the pain of reaching for the handles. ME\/CFS is a disease of energy depletion. There are probably many ways an OT could make tasks easier.<\/p>\n
Thank goodness she has an understanding doctor. Though he cannot make her better, he is kind and compassionate and that makes a world of difference.<\/p>\n
– J. Mother & At-Home Caregiver of a pwME<\/p>\n","protected":false},"excerpt":{"rendered":"
My brilliant and beautiful daughter was stricken with ME\/CFS in college. Ten years later, she is mostly homebound, suffering every hour of every day. \u00a0As her caretaker, I must do all the shopping, cooking, cleaning, and laundry. I must help her with showering and dressing. My daughter has lost everything to this disease \u2026 a […]<\/p>\n","protected":false},"author":4,"featured_media":861,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"spay_email":""},"categories":[23],"tags":[],"jetpack_featured_media_url":"https:\/\/humansofchronicillness.org\/wp-content\/uploads\/2021\/05\/bailey-zindel-NRQV-hBF10M-unsplash-scaled.jpg","_links":{"self":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/860"}],"collection":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/users\/4"}],"replies":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/comments?post=860"}],"version-history":[{"count":0,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/860\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media\/861"}],"wp:attachment":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media?parent=860"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/categories?post=860"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/tags?post=860"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}