My daughter has been ill with myalgic encephalomyelitis\/chronic fatigue syndrome (ME\/cfs) for 30 horrible years.<\/p>\n
My daughter cannot receive visits from health workers or state-funded cleaning persons because she has multiple chemical sensitivities, one of the many symptoms that pwMEs experience. Helpers have used perfumed shampoo, soap, or laundry detergent, or carry odors from their homes or cars that make my daughter sicker. Finding a home for her was an awful experience. We walked into one vacant apartment, looked around, came out, and she threw up immediately because of the chemicals, maybe petroleum from candles or cleaning products. The gas station next door was also an issue.<\/p>\n
Making and keeping medical appointments is hard because there are days when she is so weak, and changes\u00a0in energy levels that may cause the pwME to miss appointments. Sitting in an office waiting to be seen can be treacherous. So many fragrances and stimuli abound there, making visits painful. Sadly, the exhaustion of traveling and being in the waiting room can produce more suffering than the needed visit is worth.<\/p>\n
There is also cognitive impairment. She is often overwhelmed by even small amounts of information, and she cannot retain it. All information needs to be written down for her.<\/p>\n
She has experienced occasional paralysis recently. My daughter wonders if rapid heartbeat and difficulty breathing might cause her to die. Patients have died. Significantly, she personally knows some of those who have died. \u00a0A cloud hovers around us– we are all aware that lack of hope and harshness of symptoms have caused suicides. PwME\u2019s help each other online to \u2018hold on\u2019. And since most doctors do not have training in diagnosing ME\/CFS, the treatments at hospitals are more often harmful than helpful.<\/p>\n
Kindness is the most important need. Feeling support is healing all by itself; the health care professional who listens and truly wants to understand ME\/CFS is a healing gift.<\/p>\n
– B., mother of a pwME<\/p>\n","protected":false},"excerpt":{"rendered":"
My daughter has been ill with myalgic encephalomyelitis\/chronic fatigue syndrome (ME\/cfs) for 30 horrible years. My daughter cannot receive visits from health workers or state-funded cleaning persons because she has multiple chemical sensitivities, one of the many symptoms that pwMEs experience. Helpers have used perfumed shampoo, soap, or laundry detergent, or carry odors from their […]<\/p>\n","protected":false},"author":4,"featured_media":880,"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\/johannes-plenio-RwHv7LgeC7s-unsplash-scaled.jpg","_links":{"self":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/879"}],"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=879"}],"version-history":[{"count":0,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/879\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media\/880"}],"wp:attachment":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media?parent=879"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/categories?post=879"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/tags?post=879"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}