I know. I should be tired, right? We sold our house, moved all of our stuff into a storage unit, moved ourselves into our Roam Home, and now we are traveling all over the country pulling said Roam Home.
Whew! Who wouldn’t be tired?
But this kind of tired, apparently, goes beyond the normal temporary moving type of tired. I was tired before we started this whole move and Full-time Airstreaming process. It’s been ongoing since the beginning of this cancer journey. Wiped-out. Exhausted. Fatigued.
I’m the type of person who typically overlooks what my body is saying. I think of others, tasks to be completed, and ignore what my body is saying. I have to ponder really hard about what my body is feeling. Throughout the journey, I have pushed myself to keep going, and I could put being tired out of my head long enough to do what I need to do. So I could function at work, at home, on the road, and continue living each day effectively and enjoyably.
As it turns out, fatigue is an actual diagnosis for about 65% (or more) of cancer patients. It’s not just your every day, run-of-the-mill, normal tiredness. It’s fall asleep at the drop of the hat kind of tired. Narcolepsy kind of tired. Reading a book, my head starts nodding. Driving down the road, I’m drooling. (When Tim is driving, that is 😂.) Practicing my foreign languages, I have to put down the phone and just go to sleep. My body aches. It tells me to sleep. If I don’t listen, my body does it for me.
I’m not complaining, mind you. If I need a nap, I just take one. This is part of the reason I retired early (e.g. went on disability) in 2020. I didn’t need the extra stressors, and I needed the ability to rest when my body says to. My full-time job is fighting cancer, so everything else is just doing what I want.
I finally decided to talk to my doctor. He sent me for a fatigue consult.
The first time he sent me was in 2019, a few months after I had Gamma Knife radiation treatment to the brain, if you recall my history. It made sense that I was fatigued at the time, as radiation can affect your whole body. I had to go downtown for that consult (ugh). But, I was still working full-time as a university professor, and fatigue/focus was a real problem. So I complied.
The doctor I saw at the time prescribed Ritalin, and it helped a lot. I had read where Ritalin is used a lot with cancer patients for fatigue. It’s not just for kids with AD/HD. It worked! I had the energy I needed, without going over the top. I was sleeping better, and I could do my job without falling asleep during the day. I could focus. It was very helpful, and I was glad I went.
When it came time to get the prescription refilled, I didn’t go back downtown. Some time had passed and I convinced myself I was doing okay. By the time my medication ran out we were living in Vero Beach Florida (Tim was doing a temporary interim assignment there). Besides, I was going to stop working soon, so I thought that would help and I might not need the medicine.
I retired in January 2020. Then COVID hit.
Fast forward to June, 2024. I’ve been noticing the fatigue again. Not just since the move, but for the past year or more. Tim notices it more than me. He looks over at me during a movie and my eyes are closed. He sees me walking slower. He observes my focus waning. I talk to my oncologist about it, and he sends me for another fatigue consult.
I’m so glad I did it. This oncologist and her mentor specialize in fatigue treatment for cancer patients. They are the only two around who do this specialty. They have done a lot of research in this area, and recognize how challenging fatigue can be for patients. She explained some things about cancer and fatigue that made a lot of sense. For example, she said that when we have a sinus infection we go on an antibiotic for a few days. We may have some side effects, but they are relatively minor. They pass quickly. An infection is like being on the far left side of the spectrum. Cancer is on the far right. They give us more than a simple antibiotic. They hit us with very heavy drugs to attack a very bad disease. Side effects are exponentially greater. Fatigue is one of them. It’s an actual diagnosis, and when there is a diagnosis they provide treatment.
She is also willing to work with me on the refills. I can meet with her via Zoom for many of the follow-ups (as long as I’m in Texas). Pre-COVID, doctors were unwilling to do this. They had to see you in person. If anything good came from it, we can be thankful for the pandemic changing this mindset.
Some things I can do on my own to help with fatigue include exercise and diet, but she can also prescribe medication to help with the fatigue. Since the Ritalin helped me before, she decided to use it again. She gave me enough to take morning and noon daily if I need it, but I mainly take one in the morning and I’m good to go. Rarely, I will also take one at noon to give me some energy for the afternoon. And, of course, we are exercising.
I was very grateful. I can tell such a difference when I take it. I’m more focused, I have energy, and I don’t find myself looking at the inside of my eyelids nearly as often. Even though I’m not working full-time, having a fatigue specialist sure does make living retirement life a bit easier.
I do still take some naps, but it’s usually when I’ve had an extremely busy day. And I use my essential oils (En-R-Gee in particular) when I need an extra boost.
So now, je ne suis plus fatigué. (I am no longer tired.) It’s a great feeling, and I am very grateful to God for providing me with the best doctors in the world.
À la prochaine…hasta la próxima vez…until next time!