Many ME\/CFS patients are forced into the inescapable but necessary isolation of solitude, longing for the face-to-face connection we felt to loved ones and the world. Even short visits come with the inevitable post-crash.<\/p>\n
Now at 61, I was \u201clucky\u201d enough to be 47 when ME\/CFS descended on me like a thief, robbing me of\u2026.\u201dme.\u201d I grieve that young sufferers may never get to live full lives.<\/p>\n
Growing up, my health was more fragile than others, but I managed. In my 20s I owned a business, sold it and traveled to Ecuador as a missionary. Then I embarked on a music career and later worked my way up in a Fortune 500 computer company. At 40 I married the love of my life, happily following him and his young daughters to Texas as his career blossomed.<\/p>\n
I realized at 47 I was feeling increasingly more ill and after a bout with an infection and an extreme reaction to Cipro, followed by a flu that lasted weeks, I became an invalid, so weak I could hardly move, with debilitating nausea. Then came what I call \u201cThe Electrical Storm.\u201d<\/p>\n
If you\u2019ve ever touched an electric fence, that awful residual tingling is what courses through seemingly every nerve and muscle in my body\u2026. for 14 years. My heart continuously beats forcefully, electrical current shoots out into all extremities and head, even affecting my vision as though I\u2019m seeing the world through the screen of a bad 1950s snowy TV set. Triggers can make it worse: bright light, noise, frenetic TV shows, more than a few minutes on the computer, talking on the phone. No medication makes it \u201cbetter.\u201d<\/p>\n
I spend about 12 hours a day in bed, 12 in my recliner, getting up for a few minutes at intervals, jokingly calling it \u201cmy 5 minute life,\u201d grateful I can bathe myself or make food. Having P.O.T.S. makes it difficult to stand even with Florinef. My adrenals failed over time and time-release hydrocortisone is nowhere near as effective as the cortisol my own body would produce.<\/p>\n
Over time I saw dozens of doctors, from homeopaths to tropical disease specialists, grueling visits, spending tens of thousands of dollars. I realized that I had severe ME\/CFS and after a fruitless week in a Houston diagnostic hospital five years ago, I made the decision that I was not going to subject myself to any more torturous tests or dismissive physicians. I knew in my heart I was neither crazy, \u201cclinically depressed\u201d or trying to garner attention. Who would choose this disease?<\/p>\n
The best advice I can give is this. You have to make a decision to live, taking each day at a time, finding SOME joy in the day or the moment. If you\u2019re a person of faith you must cling to it and not despair, even though the emotion is there, right under the surface. There are millions of people around the world with ME\/CFS and we are \u201ctogether in our isolation.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"
Humans of ME\/CFS Many ME\/CFS patients are forced into the inescapable but necessary isolation of solitude, longing for the face-to-face connection we felt to loved ones and the world. Even short visits come with the inevitable post-crash. Now at 61, I was \u201clucky\u201d enough to be 47 when ME\/CFS descended on me like a thief, […]<\/p>\n","protected":false},"author":1,"featured_media":338,"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\/2020\/07\/stephanie_s.jpg","_links":{"self":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/354"}],"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\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/comments?post=354"}],"version-history":[{"count":0,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/354\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media\/338"}],"wp:attachment":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media?parent=354"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/categories?post=354"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/tags?post=354"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}