I had it all: a wonderful marriage, a successful interior decorating business, an active social life, and several hobbies including tennis, travel, reading and entertaining.\u00a0 But most importantly,<\/strong>\u00a0I had my health which allowed me to keep up with\u00a0all of<\/strong>\u00a0my interests and commitments.\u00a0 In September of 2013,<\/strong>\u00a0everything changed. While on vacation, I contracted a severe ear infection from a hotel pool.\u00a0 After two rounds of antibiotics,<\/strong>\u00a0the pain was worsening. I tried to forge ahead with life except that now my entire head hurt.\u00a0 My doctor tried helping me, but by the end of a year, I could no longer work or socialize.\u00a0 Just taking a shower and dressing became exhausting.<\/p>\n I tried everything to regain my health but instead of improving I was now developing intense muscle pain all over my body.\u00a0 Additionally, I experienced fevers, costochondritis (pain in the chest wall), fainting spells, interstitial cystitis brain fog, trigeminal neuralgia, and migraines.\u00a0 All of the above symptoms are common for sufferers of Myalgic Encephalomyelitis. I was happy to have a diagnosis, but no cure was in sight.<\/p>\n It has<\/strong>\u00a0been twelve long years.\u00a0 On \u201cgood days,\u201d I have a few hours of energy before I hit the wall.\u00a0\u00a0On those days,<\/strong>\u00a0I try to get something accomplished like cooking and freezing food for the days when it is impossible to do anything.\u00a0 I am laid up on average 180 days a year.\u00a0 I am grateful to my husband who has supported me both emotionally and financially.\u00a0 Many are not as lucky as I am. Throughout this struggle, I know I am not alone. There are many others like me who lead lives of quiet desperation, yet are invisible to the outside world.\u00a0 I would not have imagined that such a debilitating illness existed if\u00a0it had not<\/strong>\u00a0happened to me.\u00a0 For those of us who once had productive, fulfilling lives, we have had to come to terms with immeasurable loss.<\/p>\n Unfortunately, we are too sick to advocate for ourselves. There are dedicated scientists and researchers working to find solutions, but research funds are insufficient.\u00a0 We need more of the best and brightest minds working towards treatment and hopefully\u00a0someday<\/strong>\u00a0a cure.<\/p>\n","protected":false},"excerpt":{"rendered":" Humans of ME\/CFS I had it all: a wonderful marriage, a successful interior decorating business, an active social life, and several hobbies including tennis, travel, reading and entertaining.\u00a0 But most importantly,\u00a0I had my health which allowed me to keep up with\u00a0all of\u00a0my interests and commitments.\u00a0 In September of 2013,\u00a0everything changed. While on vacation, I contracted […]<\/p>\n","protected":false},"author":1,"featured_media":500,"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\/ginny.png","_links":{"self":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/514"}],"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=514"}],"version-history":[{"count":0,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/514\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media\/500"}],"wp:attachment":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media?parent=514"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/categories?post=514"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/tags?post=514"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}