In November 1992, life was good. Then, I contracted herpangina. It knocked me for a loop, but I kept working. I went to bed at 5 pm. My teen daughter did the housework. By May of 1993, I was suffering migraines for the first time in my life and was still exhausted. I saw my DR who knew about post viral fatigue syndrome (PVFS) and diagnosed it after testing. She suggested rest, moderate activity, and good food. PVFS became ME\/CFS over the years but the exhaustion never left me, not completely. Like so many in the ME\/CFS world, I have what I call remission periods. But the crash always happens eventually. It is just a matter of time. For so many years, I thought this was all in my head.<\/p>\n
The doctors said if I just lost weight, saw a psychologist, exercised more, took vitamins, ate only protein or only carbs, I would be fine. If I switched to a vegetarian diet, got more sun (or alternatively, less sun), maintained my blood sugar level, or get treated for chronic Lyme (which, incidentally, costs $70,000 out-of-pocket), then I would recover. Desperate for relief, I tried nearly everything the doctors told me. They would work for varying lengths of time, from two hours to a month or more. In the end, though, the crash inevitably comes. Its length is directed connected to the length of the temporary high I get from the \u201ctreatment.\u201d I am not fine. But I am ok with that.<\/p>\n
I continued to work full time until July 2008, when my mother-in-law needed me and I left the workforce to care for her. After she passed in December 2011, I suffered my worst crash ever. I pictured a gradual return of my energy and that I would soon be back to my old exhausted self. It took me two years to be able to get back into even a daily routine of showering, some limited seated housework, and driving 5 miles to the store twice a week to ride on the cart. I read \u201cHow to Be Sick\u201d by Toni Bernhard while I was \u201crecovering.\u201d It changed my CFS experience forever. I began to understand the crash cycle and how to let go of my own expectations for my life to accept it for what it is now.<\/p>\n
It has been 22 years since my trigger illness and my life is not at all what I expected or planned. There are still tears, for example, when I miss a grandchild\u2019s sports event. But there is also peace in finally understanding how to pace myself to make the best of life. I am on disability thanks to years of pain journals and 5 wonderful doctors. It is not much money but at least I feel I am helping a bit. I have a safe warm home, cats on my lap, a hubby, and family who love and understand me. I know how to best manage this disease within its limitations. For the first time in 22 years I can say that life may not be what I expected, but it is occasionally good.<\/p>\n","protected":false},"excerpt":{"rendered":"
Humans of ME\/CFS In November 1992, life was good. Then, I contracted herpangina. It knocked me for a loop, but I kept working. I went to bed at 5 pm. My teen daughter did the housework. By May of 1993, I was suffering migraines for the first time in my life and was still exhausted. […]<\/p>\n","protected":false},"author":1,"featured_media":474,"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\/nina_k.png","_links":{"self":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/495"}],"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=495"}],"version-history":[{"count":0,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/495\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media\/474"}],"wp:attachment":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media?parent=495"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/categories?post=495"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/tags?post=495"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}