I knew that I felt better in 2011 than in previous years and was able to do more, but seeing that improvement quantified just tickled me to no end! So, just in case there are any other geeks like me out there, here are the exciting numbers that prove I have improved...
I rate how I feel each day on a scale of 1 to 5, 5 being severely crashed and 1 being great. I just jot the number down on a calendar before bed each night, along with any symptoms, and also ratings for my level of exertion and level of stress (since I know these affect me significantly). I also note changes to medications or supplements on the calendar so I can track whether they help me.
So...drumroll please...I improved from an average of 2.6 last year to 2.4 this past year! That may not seem like much, but it's a 7% improvement over the previous year and a 12% improvement over two years ago. Qualitatively, I know that I spend far less time lying on the couch now; I used to have to lie down most of the time most days, and now I only need to lie down when I am crashed...which is much less (keep reading!).
Another way to look at it that I think is more telling is how much time I spent crashed. From the time I started keeping track 9 years ago, I have averaged between 15-23% crashed each year - that translates to the amount of time I spent severely ill, unable to do anything all day but lie on the couch (a 4 or a 5 on my rating scale). The annual average is a bit misleading because it hides the really bad months, which occasionally went as high as 50% crashed in previous years. But in 2011, my absolute worst month was 30% (when I got bronchitis and couldn't get rid of it for weeks), and my annual average was just 10%! That's a 34% improvement over last year and a 59% improvement over two years ago! Now that is worth celebrating!
So, you are probably wondering how I managed to improve so much in one year. It was clearly due to two new medications I started, plus one lifestyle management change:
- In January 2011, I started taking beta blockers to help treat my Orthostatic Intolerance (yes, you have some form of OI, too, even if you aren't aware of it; it underlies many of the symptoms of ME/CFS in over 97% of patients).
- In March, I started taking Immunovir, the only immune modulating prescription medication available.
- I began using a heart rate monitor to help prevent crashes; this might not have had much effect on its own, but combined with the beta blockers, it allowed me to do much more without causing a post-exertional crash.
At the same time, I was able to be more active this year than in previous years. With the help of beta blockers, I was able to increase my stamina pretty dramatically. At the start of the year, even a 15-minute walk could leave me crashed the next day, and now, on a good day, I can walk for over an hour (moderately, keeping my pulse rate below my AT) without feeling any negative effects. I firmly believe that being able to exercise mildly now will further help me to improve my stamina and my overall health. Just as the bad symptoms can cause a downward spiral, good changes can also cause a positive domino effect.
With all of this, of course, is the caveat that I definitely still have ME/CFS - these are by no means a cure. I still need at least 9 hours of sleep a night and a nap every afternoon. I still have to severely restrict my activity level and can only exercise slowly and with great caution. There are many things a normal, healthy person does every day that I would not even attempt because it would cause a crash. BUT, I am definitely making progress and doing better than I was a year ago.
So, I am starting out the new year feeling very happy with my progress and very optimistic about the future! Now if I could only get my son well enough to leave the couch behind.
|Hiking in King's Canyon National Park in June 2011|