I’ve had a craptastic week. Three crash days, including one that involved a three hour “nap.” I don’t understand what triggered these crash days, but I never do. Usually, crash days take me by surprise because whatever activity I’ve been doing just doesn’t seem to be significant enough to cause a crash. My husband is rarely surprised by my crash days; he’s always had a better sense of my limitations.
Last week I made jam and had a doctor’s appointment. We had a family dinner to go to on Sunday, so I did very little on Friday, Saturday and Sunday – I just sat on the couch knitting and watching soccer. The crashing started on Monday, and seemed to get worse through Wednesday. I completely gave in on Wednesday, taking that three hour nap and just spacing out the rest of the time. I had hoped to write several blog posts this week, and maybe work in the garden for a few minutes. I did none of this, and am writing this post from bed.
Through all of this, I have been monitoring my heart rate. With two exceptions, my heart rate was good last week. I generally stayed under 95 beats per minute, and when I did go too high I immediately stopped what I was doing to rest. On both Wednesday and Sunday, I left the house which meant showering, drying my hair, applying makeup. On both days, my heart rate soared as high as 110 beats per minute during the process of getting ready. I took rest breaks (shower, rest, dry hair, rest, get dressed, rest, etc.) to bring my heart rate down, but then it would jump when I moved to the next step in the process. It was frustrating to say the least. On both Wednesday and Sunday, I had several episodes where my heart rate was high and I briefly felt like I might pass out. And on both days, my heart rate stabilized while I was out of the house to around 87 beats per minute.
So were those episodes the cause of these crash days? Was it the high heart rate while I was getting ready? Or was it the near fainting episodes? Both? Or was the crash the result of leaving the house twice? Or that plus making jam? Or none of the above? All of it? This, in a nutshell, is the maddening part of living with CFS. Despite everything I have learned about pacing, despite monitoring my heart rate carefully, I still have crash days. And because life is not a carefully controlled experiment, I don’t know which component or combination of conditions caused the crash days.
I hate crashing. I hate being unable to do simple things like sitting upright to knit, or talking to friends on the phone. I hate being unable to accomplish the things on my modest to do list. I hate the feeling that I am just taking up space and using resources without producing anything or giving something back. And I hate not knowing – after all these years – how to avoid crashing.
Using a heart rate monitor for pacing is an imperfect system. The monitor can’t capture the energy drain of cognitive and emotional activity. And despite my staying within the heart rate limits and breaking activities into pieces for an entire week, just two hours of elevated heart rate was possibly enough to cause three crash days. The heart rate monitor is imperfect, and I am most definitely imperfect in applying that system.
You know what else I hate? Complainy blog posts. I don’t like writing them, and I assume people don’t like reading them. So I will end this on a positive note. A friend called me yesterday from the store to ask what I needed. I couldn’t think of anything, but she insisted. When she dropped off the fruit I asked for, she also brought me flowers for no other reason than that I had a bad week. This friend has struggles of her own, but she took the time to take care of me this way. It turned my whole week around, because now I feel profoundly grateful instead of defeated. It’s the love and support of my family and friends that makes this illness bearable.