So, let's describe a day in more detail. I start on one side and whenever I wake, flip to the other side and go back to sleep. The kinds of things that might wake me are LNA's coming in to take vitals, doctors, residents or students rouding, nurses delivering medicine for me to swallow or to hang for infusions, nurses a/o LNA's doing their hourly roundings, any of the various medicines infusing running out or getting air bubbles. Then there was my body's own cycle: comfortable, feeling cold, temperature going up, rigors either a few or a lot until the temperature is where my body was going with it, call the nurse can I have more tylenol? (can't have anything else due to no platelets), when I'm at my body's goal, I go back to sleep, then waken when my body decides it's time to go down with the temperature. At that point I feel hot, sweaty and remove the blankets, then soon I feel cold and start shaking, press the call button and start the cycle again. This was pretty much all I did for three days. I think by Sunday I was starting to have moment that were not devoted to fevers, but I think all of Thursday, Friday and Saturday as well as most of Sunday were pretty much as described above.
Diane came and spent Sunday with me. I think scattered through the whole day we probably managed an hour of conversation. She got me to eat a bowl of soup which was good. Most of the day, however, was spent in rigoring. You may not know what rigoring is: Merriam-Webster calls it "a tremor caused by a chill." This is like a lion is "a cat that weighs under ten pounds and has its eyelids fused shut." For me, rigors involved a rapid shaking of my entire body including my jaw, I can concentrate on making the shaking stop and can sometimes gets one or more limb to stop by thinking about it, but then it will then almost vibrate. I get short of breath and breathe deeply and loudly and exhale against my teeth, my head starts to hurt. That goes on for a while and then stops when my body has decided I am done. This activity--rigoring--was what I did non-stop pretty much for four days. I bet you won't be surprised to learn that I was sore when it all stopped, like I couldn't move myself around in bed sore, couldn't walk by myself sore. My TMJ on the left only (?) was so bad it could keep me from sleeping.
It turns out there is a med that can keep people from rigoring but too much of it gives you hallucinations and seizures. Those are things I'd like to avoid! On the other hand, rigors are not completely benign. The very people who could benefit most from control of rigors (those of us with constant rigors) are the ones who are at most risk of side effects. I did get demerol starting around Monday and it was so nice, but I wish I had gotten it sooner and possibly had fewer muscle aches and less TMJ. It's a hard balance, but I did not really understand before I had my own experience with it that rigors are not just an annoyance to the patient, that they can have some longer lasting effects.
I wish those with control over me had understood all the effects of their actions better. I hope those with control over you can see the effects of their actions well and that you are fully aware of those effects on the people you have control over.