#16 It’s okay to have bad day
We all have bad days. Even my kids have bad days. I can remember my mom or dad saying, “well didn’t you wake up on the wrong side of the bed this morning?” It was always in response to me just being in a foul mood. Sometimes we know why we’re having a bad day and other times they just are. As a kid, I might have been dreading going to school or I didn’t feel like doing the work on the farm that day. Sometimes you just wake up with a queasy stomach or headache. Who knows. The fact of the matter is that bad days are unavoidable.
When you’re sick, those bad days are amplified. I can remember one especially long night in the hospital. Those beds are horribly uncomfortable and the sheets are about as close to sandpaper as they can be and still be considered “sheets”. At the time I was hooked up to an antibiotic that needed to run over a four hour period. It ran from 4pm to 8pm. Well the nurses had shift change at 7pm which meant that I didn’t always get unhooked until closer to 9 or 9:30pm when they’d bring my night time meds in. If I could get to sleep immediately, I’d have maybe 3 hours of uninterrupted sleep before they came back in at midnight to do my vitals and take blood. Oh, and yeah, hook me back to that damned antibiotic that lasted for four hours.
This particular night, I had something similar to restless leg syndrome. There was just this deep itching inside my foot or calf muscles. All I had to do was move my foot or twitch my calf and it went away… for about two minutes before it came back. It would start as a little itch. It wasn’t superficial. It was deep. At first it was kind of easy to ignore but as this feeling grew more intense, there was a greater and greater need to get rid of it. It became something I couldn’t ignore and I had to move. It wouldn’t move on it’s on, so it was something I had to consciously do and doing this repeatedly over the course of a few hours would keep me awake. I couldn’t sleep through the sensation. This went on until midnight. By then I couldn’t take it any more and asked the nurse for something else to help me sleep. I described the issue with her. She made a note of it (so that we could discuss it with the doctor later), gave me some meds, and thankfully around 1am I fell asleep.
Ahhh, sleep. Finally, despite the line for the antibiotic hooked to my chest, between the medicine and the fatigue I finally fell asleep. For three short hours. At 4am it’s time for vitals again. Vitals are blood pressure, temperature, and oxygen reading. So I had to roll over, get my arm out for them to put the blood pressure cuff on, open my mouth for the thermometer, and offer a finger so that they could do the 02 stats. It’s not really like you can sleep through it, or at least I couldn’t.
By this time my blood work has come back and this particular morning I needed both a platelet and blood transfusion. Along with my normal magnesium infusion. (Some of the meds I was taking would burn through magnesium so I was constantly needing one to two magnesium infusions every morning.) It was just in time to unhook my antibiotic only to get hooked up to three more things. The platelets and blood would last 45 minutes and an hour, respectively. The magnesium was one hour per bag. When the pump has finished dispensing the meds, a loud beep, beep, beeping goes off to let the nurse know so that they can unhook it or in the case of the magnesium switch to the next bag.
It’s now 5am or 5:30am when the beeping starts. I might have been able to doze back off. Once the beeping starts though, it’s a cascading event. The platelets were done. So then it’s time for vitals again. After a transfusion they have to make sure that you don’t have a reaction so they recheck vitals and do a post platelet count (another blood work for lab to see how much, if any, the platelets came up). Within about another thirty to forty minutes the blood transfusion is done. So they do another vitals check as they remove the line for the blood. It’s maybe 6am or so when the last bag of magnesium is finished and the beeping resumes.
It’s just before shift change and in order to get my hooked back up to my antibiotic in time they start it before shift change. So just before 7am I’m hooked back up to the antibiotic that has to run over the course of 4 hours. When it’s all said and done, I’ll have been connected to my pump for almost twelve hours.
Between the lack of sleep and the poor sleep, you can probably guess that I didn’t have the best day. I was tired and groggy all day. Think about taking a Tylenol PM but staying up all night. Hell, even taking a Tylenol PM and sleeping all night I still wake up feeling groggy. This was worse.
Each day I was in the hospital, I tried to plan out my day. I’d get breakfast, take my meds and write in my journal a little bit. I’d either spend some time writing on my computer or do a little reading. Late in the morning, I’d take a break and spend some time playing video games. After lunch, I’d take a walk downstairs or a quick stroll outside. Thankfully this time I wasn’t attached to my pole and would try to get some extra time outside. On the off chance I was still hooked up, sometimes I’d just walk out the main doors and sit down on one of the benches. After a walk I might try to take a nap or just read a little bit. Later in the afternoon, I’d either try writing again or play video games for a bit longer before ordering dinner and getting in bed. I was always in bed early since I knew I was going to be up so early.
This day wasn’t like that though. After the night I had, I couldn’t concentrate long enough to read one page. I jotted a few notes down in my journal but promptly got back in bed and turned on the TV. I tried to doze but still there are very few hours that go by where something isn’t happening. Especially in the morning. Vitals at 8am. Doctors make their rounds between 9am and 10am. Meds at 11am or 12pm. Vitals again at 12pm. Between 1pm and 3pm might be the quietest, if the cleaning ladies don’t come in to take the trash and mop the floors.
I tell you all this, not so you can feel sorry for me but so that you have an insight to why it’s okay to have a bad day. Theres’s going to be those days where things do not go according to plan, and that’s okay! I’m not saying make excuses but understand where and what you can control. In this instance it was a series of events that led to me feeling worse than usual. I didn’t blame anybody though. I didn’t take it out on the nurses or the techs. They were doing the best they could to try and be as accommodating as possible. The night shift especially were always so apologetic about having to wake you up. I was constantly amazed at the amount of work they were able to do in minimal to no light. The day shift was just as good and just as busy. Despite working between patients and doing their best to keep things running smoothly, they were always doing it with a smile and nice conversation. I loved all the nurses. They were great. It wasn’t anybody’s fault I was having a bad day. I may have felt like total shit but I didn’t take it out on anybody. I was grateful for their hard work and knew they were doing what they were supposed to and doing it as gracefully as they could.
I allowed myself this one bad day. I wallowed in the feeling of sleepiness and the nausea that comes from being denied sleep over and over. I think I did manage a small walk and a couple sets of bodyweight squats. That was it. I laid up in bed most of the day and by the end of the day, I did feel a bit better.
I was fortunate to only have a handful of days like this and there were rarely back to back. I can only think of one instance where I was in bed for two days. The rest of the time I could get up and get moving. In powerlifting we have rest days and even weeks we call deload weeks where we decrease the amount of volume and weight that we lift to give the body time to heal and recover. I kept thinking of these bad days, as my rest days. Internally my body was fighting. It was fighting off the chemo, it was fighting off my disease. Later after the transplant, it was fighting to accept the new stem cells and create harmony between donor and recipient. While I might not have been squatting four or five hundred pounds, my body was doing the work like I had. There was a lot going on and I tried to keep up a seemingly active physical appearance.
Our best efforts can’t control every circumstance. So we roll with the punches and play the cards we’re dealt. Some days we take more punches than others. Some days we’re dealt a really good set of cards. Just remember, not every day is a great day. We’ll still make the most of it, but don’t let the bad days distract you from the fact that there’s going to be a tomorrow that likely won’t be as bad. Get through the day and move on. Rest when appropriate and recognize that it’s necessary. Control the negative emotions that will rise up when things don’t go our way, but plan on how to recover and make the most of the next day. One day at a time.