I was a healthy, very busy,\u00a0full-time<\/strong>\u00a0RN for many years. My only medical history was 7 years of fibromyalgia and 4 years of occasional panic attacks.\u00a0 In 2005,<\/strong>\u00a0I was hospitalized with an\u00a0abscess<\/strong>\u00a0under my jaw. I\u00a0could not<\/strong>\u00a0unclench my teeth or swallow. My face was swelled up huge. After a week in the hospital, I was discharged with C-diff, an infection of the intestines that I got in the hospital. That was 10 years ago this month.<\/p>\n My strength and independence were gone when I got home. The doctors kept saying, \u201cIt will get better.\u201d<\/strong>\u00a0 I did not-ever. I have not been able to work,\u00a0walk very far, or<\/strong>\u00a0stand still for more than a minute since that time. I feel vaguely unwell all the time and extremely unwell very often. I am so weak I have to spend approximately 85-90% of each day in my recliner with my feet up. I can no longer drive as I can no longer concentrate well at all. My heart rhythm is erratic and can stay near 200 for days but it is regular. I also get PVCs (missed beats) often. I take a beta blocker for that. I take Provigil to wake me up a bit in the morning and a sleeping pill to sleep. I take Xanax as needed to fend off panic attacks because any anxiety paralyzes me (the neurologist says that is cataplexy). I\u00a0cannot\u00a0<\/strong>work and I was the only wage earner in the house. I had to cash out my retirement the first year to live on\u00a0until<\/strong>\u00a0I could get SS disability. I had to fight to get a small pay out from the paid LTD.\u00a0 I suddenly was needy and helpless for the first time in my life.<\/p>\n I am the same now; no real ups and downs unless I try to go out with somewhere.\u00a0 I am 98% home bound.<\/strong>\u00a0Thankfully,<\/strong>\u00a0my husband buys the groceries and cooks. He is on disability for his own problems, but together we do manage.\u00a0I have had<\/strong>\u00a0many diagnoses (Lyme’s, MS, Narcolepsy, heart problems, and stroke) ruled out before I went to the Mayo Clinic in 2009. They confirmed what 3 other doctors had told me: CFS. I am now 60 so I just blame it all on age\u00a0now; it<\/strong>\u00a0is too hard to explain to people unless it a doctor or someone who really needs to know. I no longer believe in cures or treatments for CFS. I tried a lot of them and I am so over it. The XMRV fiasco of 2009 was the last of my believing. I do hope\u00a0someday<\/strong>\u00a0a cause will be found so it can be treated but I no longer believe it will happen in my lifetime. This is a devastating illness and very difficult to adjust to. My thoughts are with all who have CFS. God bless you. I would not wish it on my\u00a0worst\u00a0<\/strong>enemy.<\/p>\n","protected":false},"excerpt":{"rendered":" Humans of ME\/CFS I was a healthy, very busy,\u00a0full-time\u00a0RN for many years. My only medical history was 7 years of fibromyalgia and 4 years of occasional panic attacks.\u00a0 In 2005,\u00a0I was hospitalized with an\u00a0abscess\u00a0under my jaw. I\u00a0could not\u00a0unclench my teeth or swallow. My face was swelled up huge. After a week in the hospital, I […]<\/p>\n","protected":false},"author":1,"featured_media":499,"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\/cindy_d.png","_links":{"self":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/512"}],"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=512"}],"version-history":[{"count":0,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/512\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media\/499"}],"wp:attachment":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media?parent=512"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/categories?post=512"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/tags?post=512"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}