Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Wednesday, July 31, 2013

That precarious feeling

Do you ever get the feeling that you're balanced precariously between crashed and not crashed?  Like you could tip in either direction at any time?

I've been feeling that way  ever since about two weeks ago when I caught a mild bug. Unlike other bugs, it was actually so mild that it didn't cause an immediate crash.  The only reason I know that this bug is still hanging around is that it has left me with constant sniffles and post-nasal drip.  That and the return of an old symptom that I thought I had rid myself of after the first year with ME/CFS: morning flu.  During my first year of illness, I would get this particular flu-like feeling that would surface in the morning hours between 7 and 9 a.m.  Then it would usually just dissipate.  Well that's back too.

So I almost feel like a spectator to my own health.  Of course I've upped the zinc and vitamin C doses (still within safe limits), and tried some other tricks, but nothing has resolved.  It's as if all I can do is wait and watch to see which direction I tip.

This past weekend, my wife and I took our kids to my parents' house to spend some quality family time. Everything went well until Sunday when, out of nowhere and within minutes, my wife became ill with a severe flu.  It came on quite strong, with body-racking chills and a high fever.  So we drove home soon after the flu's onset and prepared to enter into a sort of survival mode just to get through the week.

It's not even 3 days later now and Mrs. Calvin is back on her feet nowit was a 48 hour bugbut two things struck me while she was ill.

First, for a brief 24 hour period, I was actually the more functioning, capable member of the team, and boy did I relish every second of it.  It was like I was trying to make up for two+ years of her helping me when I'm down.

The second thing was how quickly Mrs. Calvin recovered.  Within about 30 hours, she had rocketed past me on the functionality scale.  By Tuesday she was attending an important meeting and supervising our daughter's swim lesson.  All the while I'm cringing and trying to cajole her to cancel her obligations and rest up.  Mostly, she shrugged off these suggestions and was no worse for the wear.

It made me realize that in two short years I seem to have lost all perspective of what it's like to have a normal, functioning immune system.  I used to be like her too.  No flu or cold could keep me down for more than about 48 hours.  All that seems like a different lifetime.  


  1. "All that seems like a different lifetime".....what a powerful statement that is. I have said that line a thousand times in the past 2.6 years with this, especially with an acute onset like yourself. I sometimes find myself drifting back in time to the days up to when I became stricken, days that may have been the last fully healthy ones in my life (hopefully not, but who knows). Curious if you ever find yourself doing that. Comparing ourselves to others is unfair, but hard not to do. I also look at my wife and family and notice them more in regard to how they go through life recovering from all sorts of things, not only physically, but mentally as well. We all know the mental burden this places on us as well, a double whammy so to speak. Have you surfed again recently?

    1. Hey Bret,

      I of course think back to the days before I got sick too...quite often actually. The day before was almost a perfect day, where my wife and I went to a local summer festival and I enjoyed the beer garden, live music, and perfect weather. It had no idea that was the last day I would feel well in.... well, we'll see.

      I try not to compare myself to others who are more healthy, but it's hard not to get pangs of jealousy when I see people out jogging, playing basketball and being active. Because I can so easily recall what that feels like, and I miss it. I know you know what that's like.

      Haven't surfed since the one time. It will take a rare convergence of circumstances for that to happen again.

      How have you been feeling lately? Any upward trends?

  2. Mentally that is most challenging aspect of not start thinking of what was, and if it will ever come back. Staying in the present is the goal, but easier said than done sometimes. I am still at my 75% pre illness levels give or take a percentage. In order to do that, I have to stay on my regimine of vyvanse, d ribose, NT factor,testosterone, and immunostim. My guess is I should try the equillibrant (sp?) that you have had some success with.....thoughts? I will be getting a saline IV on 8/8 at my next appointment to check that off the list to see what effect it has. My doc is good about trying new things that don't pose any obvious risks. This would be intended for temporary relief, not a cure of course. But hey, even a couple of days of improvement with this would be nice, especially for weekend plans, etc. I will certainly let you know my experience. Your description of the day before you became ill has to be emotional in a way to think of, especially since it was picture perfect. Fingers crossed we'll see those days again.

    1. Hey Bret, there always seems to be a lot of buzz about Equilibrant on the message boards, and I would say about half of the people report that it helped them significantly. With those odds, it seems to me it might be a good thing for anyone with ME/CFS to try as long as their doctor says it doesn't conflict with anything else they're trying. If you decide to try it, let me know how it goes. And I'm very curious how the saline IV will work out for you. Best of luck with that.

  3. This post struck me: mostly bc it said exactly how I've felt too, on both sides of the coin. Relishing in being the one that can actually help take care of someone else but then also feeling completely shocked when they bounce back so quickly and with so little "thought".

    I did the same thing: "noo, rest more, you're pushing too hard - too fast". But nope, they jumped up, returned to life and were fine. I always feel like it's the weirdest things that remind me how differently my brain works now: if I had been the one that caught the bug, every hour of that next month would have taken a careful balancing act to get going again and for healthy peeps, its no thought at all! :)