Eight years ago at age 61, my ME\/CFS began. I was never sure what caused it. My bloodwork showed I had a mild case of Mono at the time. I was tired, but didn’t know I was sick. I kept on working at a very high powered job until the illness made it too hard to continue. Like so many of us CFS patients, I saw many doctors, homeopaths, and specialists, non of whom could tell me what was wrong. As the disease progressed, I also developed POTS syndrome. Today at 69, I function at about a 4 or 5 on a scale of 1-10. I take a drug called Armodifinal, which gives me a window of about 5 hours in the early morning to write poetry and reach out to my friends. I have not allowed myself to lie in bed, but have chosen the recliner and the sofa as my afternoon and evening home.<\/p>\n
Last night for the first time, I watched the documentary UNREST. This prompted me to get involved. I was stunned and horrified by the brave young woman and men participating in the film. I immediately wrote to my family and physician to watch both the documentary and the UC Berkley School of Health\/ CFS panel YouTube discussion of current research on this debilitating and devastating disease. I want to be a part of this initiative, and though I don’t expect to see a cure within my lifetime, while I’m here, I won’t to make a difference in the lives of CFS sufferers as well as in the lives of those who will develop this condition. My greatest contribution may be my poetry:<\/p>\n
Her body is a stranger now, a slow ceremony of losses.
\nShe lies a stiff wire, stretched long, and solitary on the old blue chair\u2014
\nThoughts recede in fog,
\nloneliness takes over.<\/p>\n
Through the glass, the world gathers itself away.
\nShe watches snow, the burning green,
\nthe shifts in light as seasons pass, as in a closet,
\nput themselves away.<\/p>\n
Her body, empty and unshivering, absent in all.
\nShe thinks, my dust is coming and
\ndoes not take; there is no having back.
\nShould summer wind the bell, the swallow,
\ncall her back upon its blue open hand,
\nshe cannot take,
\nnothing gives.<\/p>\n","protected":false},"excerpt":{"rendered":"
Eight years ago at age 61, my ME\/CFS began. I was never sure what caused it. My bloodwork showed I had a mild case of Mono at the time. I was tired, but didn’t know I was sick. I kept on working at a very high powered job until the illness made it too hard […]<\/p>\n","protected":false},"author":6,"featured_media":949,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"spay_email":""},"categories":[1],"tags":[],"jetpack_featured_media_url":"https:\/\/humansofchronicillness.org\/wp-content\/uploads\/2022\/04\/Mary-S-scaled.jpg","_links":{"self":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/947"}],"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\/6"}],"replies":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/comments?post=947"}],"version-history":[{"count":1,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/947\/revisions"}],"predecessor-version":[{"id":948,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/947\/revisions\/948"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media\/949"}],"wp:attachment":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media?parent=947"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/categories?post=947"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/tags?post=947"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}