Ask the Advocate: Coping with Fatigue in Multiple Myeloma

How has fatigue related to multiple myeloma affected your daily life?

Most of the fatigue I experienced took place during my treatment. I was going through chemotherapy, and all the chemicals that are introduced into your body have an impact, whether it’s physical or emotional.

And I was very active prior to being diagnosed. I had a lot of energy, and I noticed a difference. Mentally, it was a bit of a challenge, just getting used to being tired all the time.

I did find some coping mechanisms. I leveraged some of the information that was given to me by Blood Cancer United to accept that this is just part of the journey. So, I embraced it, knowing that it’s only going to help me recover.

I took naps during the day. I would eat lightly, knowing that I’m not going to be as active as I was before.

I didn’t want to put a strain on my body by having to digest more food than I’m going to need and then subsequently put on weight. Although that’s never really a problem when you’re getting chemotherapy, only because you tend to eat less anyway [often as a result of side effects like nausea, digestive issues, and changes in taste].

It was very much a challenge because I couldn’t exercise the way I used to. I did some light walking, and that did seem to help.

I tried my best to just keep my mind active. I played a lot of video games with my son. We played these action games on the [PlayStation 5], and I’ll tell you, that was very therapeutic.

Some of it was challenging. It was challenging my mental and cognitive abilities to remember locations and how to navigate a map and how to respond. Your motor skills get a little workout. [Playing these video games] probably made me more tired, because I did stay up late to do that.

What does your fatigue feel like, and how persistent is it?

I do still have fatigue. [Bryon is out of treatment but takes an oral chemotherapy drug as part of maintenance.] But you know, I don’t even know if it’s because I’m getting older [Bryon is 62] or if it’s a consequence of myeloma.

But I do pay attention to my body, the signs and signals of when I’m tired. I know I’m not going to be my most productive during midday, so I will take a nap. I used to think that was something that babies and old people would do.

I realized two things. One is I’m a cancer survivor. But I’m also getting older. So, I take 10 to 15 minutes [to nap], and it makes a big difference. I’m pretty energetic for the remainder of the day.

In addition to the fatigue, I was also diagnosed with ADHD at a late stage. So, with the combination of the two, I’m not sure how that’s impacted me cognitively. But I am aware that when I’m tired, I need rest.

When I feel like I’m just kind of thinking in all different directions, I need to take some medication, you know, just to kind of stay focused. A lot of times, those [ADHD] medications are uppers. So they keep you up and alert and focused. But the downside is that you may not be getting the rest that your body requires.

What strategies have helped you manage fatigue?

I can’t speak for anyone else, but for me, I think, those activities that I did while I was in treatment helped me to rebound and recover. Because when I was able to get back into the public domain and start to eat a little bit more normally and get back into more of a sleep pattern according to how much energy I exerted during the day, I wasn’t as fatigued.

I would start really lightly with the workouts. I did a lot of walking. And then I took that up to bike riding after maybe a month or two. And then I went back to the gym after about 3 to 4 months.

I never worked out really heavily after being diagnosed, but the activity itself was necessary for my body to respond and really recalibrate.

I belong to a chess club here in Atlanta. It keeps me mentally agile.

I read books. I stopped reading for a long time after getting out of school. I didn’t really read for leisure. But I did that while I was recovering, and it turned out to be very therapeutic, so I continued to do that.

I like to do things that are naturally stimulating. So I’ll go outdoors, and just hang out, stay quiet, and unplug. I just kind of take in nature. I think that’s a good way to really reset.

Where do you turn for support when fatigue makes daily tasks difficult?

[I’ve used] all the information I’ve acquired since being diagnosed, and been really looking for reputable sources like Blood Cancer United.

I’ve been able to really understand why [fatigue from multiple myeloma] happens and how to deal with it. I don’t feel guilty about not being able to do something because I’m tired. I know how to react to it and reset.

So it’s really about self-advocating. Self-advocacy is an important part of a recovery — you know, when you’re given this diagnosis and you go through all the emotional rollercoaster of asking why it happened and how you get better. [You’re] not knowing what’s going to happen in the future. Because it can go either way.

Really, you have no control over certain things, like how your body responds to drugs. So that emotional component of recovery is very taxing.

For me, [self-advocacy] is learning how to protect yourself physically, emotionally, professionally, and personally. It’s a learning experience, because you don’t really come into [a diagnosis] knowing how to do that.

That external support system is important too. It supplemented my own ability to self-advocate — family members who would pitch in and have some grace when I wasn’t exactly myself.

It was a holistic kind of recovery. It required not just myself being a self-advocate but other people advocating for me as well. My wife and my kids were right there.

What advice do you have for those who are new to managing this type of fatigue?

I would say the one thing that I didn’t expect as part of my treatment was to look at behavioral [and mental] health. A therapist wasn’t anything that I’d ever thought that I would need.

I did it because I wanted to know what tools I could use. What else is going to help me get better and recover? I thought [therapy] was a great decision because the therapist was very familiar with patients who were recovering from cancer.

She understood all the nuances that went with navigating an uncertain future and going through this existential crisis that people go through when they’re diagnosed.

It really helped me set some expectations as to how I should behave. Or maybe how to accept the behavior that I [was] experiencing as a result of these toxic chemicals in my body.

There’s a thing called brain fog. It wasn’t debilitating, but it was very much present. My wife would tell me I’d ask the same question several times. It would be annoying if it wasn’t for the fact that there’s a reason for it. I understood that. That was something that I learned during therapy.

Is there anything else you’d like people to know?

I was introduced to somebody last week who was just recently diagnosed with multiple myeloma. She happens to be a pediatrician. Nevertheless, it impacted her the same way it impacts most people.

You’re kind of in denial. It’s like an out-of-body experience. You’re thinking, “Is this really happening to me?” So she was really struggling with the diagnosis.

And I told her, above all, to be a self-advocate. Make sure you ask a lot of questions. Make sure you have someone who’s there to listen to the doctor when you’re having those visits. Because you’re not going to remember everything.

Just accept vulnerability. This is part of the journey. Vulnerability is a thing that you’re going to have to embrace. Because you’re just going to need help.

Bryon Daily is a multiple myeloma survivor and a staunch advocate for closing the disparity gap in healthcare. Diagnosed in early 2018, Bryon went through several months of chemotherapy leading up to an autologous bone marrow transplant. Since his diagnosis, he has taken up bicycling and dedicates time to speaking publicly about the importance of self-advocacy and risk mitigation related to health and wellness.

During Bryon’s convalescence, a member of his oncologist’s staff referred him to Blood Cancer United (formerly The Leukemia and Lymphoma Society [LLS]), where he became aware of the resources available to patients and families battling with blood cancer. That exposure motivated him to enlist as a community outreach volunteer in 2019, fulfilling a purposeful mission of education in communities that experience disproportionate inequities in quality healthcare.

In 2021, Bryon joined LLS as the National Community Outreach Manager for Blood Cancer United’s Community Link program. He supports 12 patient and community outreach managers who are responsible for 16 Community Link cities by assisting in the implementation and execution of efforts to promote awareness of blood cancer, particularly in the areas of volunteer recruitment and engagement, relationship building, and sustainable outreach strategies.