I’ve always been a planner, and living with CFS wreaks havoc on plans. I never know if I’ll be able to follow through on plans, big or small. I missed my cousin’s high school graduation, and at least three weddings of friends from law school. But I’ve also had to cancel on lunch with friends, movies, dates with my husband, errands . . . and it’s not just planned outings (which are few and far between anyway). I frequently reach 4pm and I’m too spent to make dinner. The tidying up I planned to do? Putting away clean laundry? Making that phone call?
Anyway, you get the picture. Making plans when you have CFS is frequently a crap shoot (or an exercise in futility).
Since strapping on the heart rate monitor, I feel like this crap shoot effect has been quadrupled. There are times I can’t make another trip up the stairs, not because of how I’m feeling but because my heart rate is running too high. I am working so hard at being disciplined, obeying the alarm and resting. This past weekend was very busy, and I rested up for almost two weeks – passing on other things – to have the energy to make it. (I did make it, but I’m still crashed).
My life is becoming increasingly regimented: obey the alarm; don’t do X so that you can do Y in three days; no impulsive baking (or anything else); no spur of the moment visits from friends. Being housebound, I have always had limited options. My husband will ask “What do you want to do tonight?” and I will say “Same options as every other night: knit, read, or watch tv.” There’s never been freedom for variety or novelty. But now, I feel like I’ve gone from “severely limited” to “carefully controlled energy microclimate.” The lack of flexibility and spontaneity is oppressive.
Then there was last Monday. My heart rate was running really low (for reasons I still don’t understand). I was able to go up the stairs without triggering the alarm. I didn’t feel good, but I felt stable. My husband took a day off from work, and we decided SPUR OF THE MOMENT to go out to lunch. Like normal people! All spontaneously and everything!
And I did it! We had lunch, and my heart rate alarm (which I left audible despite being in public) only went off when I was walking from the car to the restaurant and then back out. It’s hard to describe to people who are not housebound how this feels. All I can say is that doing something as mundane and normal as going out to lunch with my husband makes me feel like a human being.
But the best moment came afterwards when my husband went into the local soccer store. I was waiting in the car, and he came back out to tell me that there were two players from the Philadelphia Union in the store. We are serious Union fans. Did I want to meet them? So I went into the store (alarm binging now) and met Leo Pajoy and Roger Torres. They were quite gracious, and even posed for a picture. It doesn’t happen often when living with CFS, but sometimes spontaneity works out just fine.