Thank you
@Old Bones so have you always been severe, what are you symtoms and it's funny you mentioned you get Pem from cognitive efforts like concentrating because all I have been doing for the past weeks is looking things up, I probably spend at least 10 hours a day looking up what ever I can about this
Hi
@nikefourstar I'll respond to your "Post" question first. Although I don't remember the exact second I got sick, I do remember the exact day. Both my husband and I became ill with an upper respiratory infection from the same exposure. He recovered, and I have never been well since.
No, I haven't always been severe. It's probably most accurate to describe me as a mild "sudden onset", with "gradual worsening". I was able to work full-time for the first year and a half, although I had to give up more and more other activities (study, volunteer, sports, social) in order to do so. I should mention that during the most rapid decline, I was exposed to a toxic soup of chemicals during an extended office renovation. I was eventually diagnosed with multiple chemical sensitivity as well.
By the time I stopped working, I was moderate. Apart from being exhausted, and sleeping almost the entire time I wasn't working, cognitive problems interfered with doing my job. For example, I couldn't understand the English language in work documentation. And, I couldn't add three three-digit numbers together with a calculator and get the same answer twice. (Jen Brea's reference to "accountants who can't add" really resonated with me, although that was not my job.)
I attributed my problems to a period of extreme work demands at, and for several months after, onset. I expected to improve with rest. But, like so many of us, once I stopped living on adrenaline to keep going, I crashed. By the time I saw an ME specialist two years after onset, I was severe (his designation).
When looking at the longest lists of symptoms on the most stringent criteria (CCC or ICC, for example), I can say "check" to almost all of them -- but not all at the same time. For example, my period of extreme sensitivity to light, sound and smell is over, and I rarely experience what my doctor referred to as "petit mal seizures" these days. My problem with math has resolved, and I can understand what I read. But, my memory and concentration are horrible. As a result, I have difficulty learning new things. And, I've lost many prior competencies (eg. playing the piano, sewing).
Initially, I placed pain at the bottom of my concerns. This is no longer the case due to small fiber neuropathy. But otherwise, I don't always feel horrible. This improved state either allows me to recognize PEM, or is because I now adjust my physical and cognitive effort to avoid PEM -- a "chicken and egg" situation. Which came first?
These days, I'd describe myself as moderate when I pace myself adequately, with the potential for a rapid decline into severe if I don't. I've often been surprised at how what seems to be a minor expenditure of energy has made me much worse for an extended period of time (meaning years). And a few times I've been surprised to survive a short burst of intense activity or a period of extreme stress with few, if any, repercussions.
I guess the take-away message is this: One can't predict how this illness will progress, and there's no benefit in projecting how we are "right now" into the future. We're all different. Although our actions/lifestyle can influence the outcome, we're not in control. We can only try to make the best decisions in the moment with the information we have.
Do consider the effect cognitive effort has on how you feel, and at the very least, take regular breaks in your research efforts. Have you heard the term "aggressive rest therapy"? If not, take a look at the information available on-line -- many differing opinions, as usual. Kudos for your initiative in trying to find a solution. In time, "cause and effect" will become clearer, and you'll be the expert, on you.
Best wishes.
