Humans of ME/CFS

I was a healthy, very busy, full-time RN for many years. My only medical history was 7 years of fibromyalgia and 4 years of occasional panic attacks.  In 2005, I was hospitalized with an abscess under my jaw. I could not unclench 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.

My strength and independence were gone when I got home. The doctors kept saying, “It will get better.”  I did not-ever. I have not been able to work, walk very far, or stand 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 cannot work and I was the only wage earner in the house. I had to cash out my retirement the first year to live on until I could get SS disability. I had to fight to get a small pay out from the paid LTD.  I suddenly was needy and helpless for the first time in my life.

I am the same now; no real ups and downs unless I try to go out with somewhere.  I am 98% home bound. Thankfully, my husband buys the groceries and cooks. He is on disability for his own problems, but together we do manage. I have had many 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 now; it is 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 someday a 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 worst enemy.