I was a totally outgoing and social butterfly, working 2-3 jobs at a time.\u00a0I loved to<\/strong>\u00a0work and to travel.\u00a0Then in 2000, I caught mono from a drinking glass in a bar; that was a real struggle.<\/strong>\u00a0In 2002, I was rear-ended and never fully recovered.<\/strong>\u00a0The hardest thing for me besides dealing with the illness was dealing with\u00a0who<\/strong>\u00a0I was without work. I still feel ashamed when anyone asks me what I do for a living. I say I am disabled and deal with their reaction: \u201cOh, you look fine,\u201d and so on. Expectations from me are always difficult.<\/strong>\u00a0\u00a0People\u00a0<\/strong>think I should be\u00a0who<\/strong>\u00a0I was, and I have done a 359 degree turn\u00a0from\u00a0<\/strong>who I was.\u00a0Fatigue or pain\u00a0<\/strong>rule my days, and each day is a struggle. Most of the time, I have to settle for less,\u00a0with\u00a0<\/strong>many disappointments and lost time, time spent doing nothing but feeling pain and fatigue. I miss my life. I miss not owning a pet.<\/strong>\u00a0I had to allow my wonderful little parrot to be adopted; I cried for days. Disability was a nightmare.<\/strong>\u00a0It took 3 and 1\/2 years to get and only\u00a0with\u00a0<\/strong>the help of my Congresswoman. The judge was asked to retire early,\u00a0sued for all his lies.<\/strong>\u00a0 I had to move in with my mom and then had to become a caregiver to her when she became ill.<\/strong>\u00a0I walked around like a zombie for years;<\/strong>\u00a0I did not go to\u00a0doctors<\/strong>\u00a0for myself.\u00a0I have no idea how I got through it-only by the grace of God!<\/strong>\u00a0 Now I live with my sister;<\/strong>\u00a0she is kind to house me. But I ache to be independent and have my own life. It is depressing. I was never\u00a0been\u00a0<\/strong>depressed in my life. I got past the suicide thoughts to just acceptance, but that is a very hard pill to swallow on days I have to say no to something I really want to do. I have had to move to another area and\u00a0I<\/strong>\u00a0miss my friends. Sadly, it takes energy to make new friends.\u00a0 I just\u00a0do not<\/strong>\u00a0have it. I try to keep my head up, but sometimes I just cave and stay in bed and do nothing\u00a0until\u00a0<\/strong>I can get my head around the\u00a0pain or fatigue<\/strong>\u00a0again. It is an endless struggle and there is no light at the end of the tunnel. Now I am starting a new insurance.<\/strong>\u00a0The process of setting up and finding new doctors is daunting.<\/strong>\u00a0 It can take months, and each\u00a0doctor<\/strong>\u00a0thinks they know what is best.\u00a0 When I have worked out what works for me, I just need them to listen, and allow me to treat myself with what I know works. I pray that in my lifetime there is a cure, but I doubt it; the funding is just not there.<\/p>\n","protected":false},"excerpt":{"rendered":" Humans of ME\/CFS I was a totally outgoing and social butterfly, working 2-3 jobs at a time.\u00a0I loved to\u00a0work and to travel.\u00a0Then in 2000, I caught mono from a drinking glass in a bar; that was a real struggle.\u00a0In 2002, I was rear-ended and never fully recovered.\u00a0The hardest thing for me besides dealing with the […]<\/p>\n","protected":false},"author":1,"featured_media":527,"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\/jeanette_f.png","_links":{"self":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/547"}],"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=547"}],"version-history":[{"count":0,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/547\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media\/527"}],"wp:attachment":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media?parent=547"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/categories?post=547"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/tags?post=547"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}