Letters From Cancerland: The Fatigue Factor
Multiple myeloma has a garden variety of symptoms, ranging from bone pain to anemia. The various treatments for myeloma come with a broad assortment of side effects, ranging from neuropathy to neutropenia. Let’s face it: there’s a veritable smorgasbord of myeloma symptoms and side effects to sample every day in Cancerland.
My omnipresent symptom is fatigue. It was a bellwether when I was first diagnosed in 2004 and the canary in the mineshaft this summer when I relapsed.
My fatigue can be a showstopper. My fatigue can be a quiet, polite acquaintance. It can slam me when I least expect it or be surprisingly absent when it should be overwhelming me.
It is always there.
In response, I have devised a variety of common sense fatigue countermeasures. (I could call them “fatigue fighters,” but fighting takes way too much energy.) These are my top ten ways (in no particular order) to regroup, reenergize, and recharge when fatigue comes to call.
- Nap. I learned back in 2004 that naps were not the exclusive right of infants and cats. Over time, I forgot that lesson and had to relearn it this fall. An often forgotten corollary to this is Get enough sleep each night.
- Be flexible. I often lock myself into my day, my schedule, my to-do lists, both at home and at work. I have learned to shoehorn flexibility into my life when fatigue strikes. That means turning off the little voice that says “But April, it’d only take a few minutes to stop at the store and pick up those items.” The store can wait.
- Eat and drink. When I am tired, I try to eat a little something – fruit, crackers – even if I am not particularly hungry. I also make sure to keep a glass of water close at hand and resort to it often. Sometimes that is all it takes to get me back on my feet.
- Indulge. Never underestimate the power of a small treat: a piece of chocolate, taking a break from fixing supper to read an extra 30 minutes, driving home from the oncologist down a small scenic road rather than the highway. My husband Warren has a gift for making even the smallest moments of great reward when he sees me flagging.
- Disconnect electronically. This is my greatest fatigue antidote in many ways. I am not a Luddite: I text, email, and use Facebook on a daily basis. But I am too easily pulled into the wired immediacy of our modern world and its exhausting demand of “staying connected” all the time. I deliberately disconnect in the evenings and most of the weekend by turning the cell phone off and not logging into my email or Facebook accounts. In lieu of the electronic chatter, I read books (print, not electronic), correspond the “old-fashioned” way, and draft my blog posts or this column longhand. The deliberate, slow pace helps me recharge.
- Walk. Fatigue can force me to the couch. Even as small a walk as around the block can be enough to lift my energy levels. I am fortunate to live in a highly walkable community.
- Meditate. Meditation, prayer, mindful reflection — call it what you want, it is a powerful tool against fatigue. I often light votives as I reflect and pray. Their bright spears of light fill me with hope and a sense of renewal.
- Get outside. Nature is a huge restorer. Sometimes I combine this with a walk. Sometimes I just sit outside or in front of a window. Watching a brilliant sunset or dazzling sunrise paint the sky does me great good.
- Give myself a break. I have written about being flexible and about being indulgent. This is about giving myself permission to be unwell. It is not unusual, when I am most fatigued, to realize I am pushing myself way too hard to show I’m “okay.” When this happens, I stop, draw a deep breath, and give myself permission to be ill without embarrassment or shame. This allows me to step away from the moment and regroup.
- Do nothing. This last bit comes from the late, great children’s author Madeleine L’Engle. Writing about the final illness of her husband, she observed that we often tell ourselves “Don’t just stand there! Do something!” L’Engle found it far more important at times to do nothing and just stand there. Sometimes my best fatigue antidote is to do nothing and just wait it out.
The reality of living in Cancerland is that I live with a lot of fatigue. Multiple myeloma, both the disease and the treatment, wears you out.
I liken the fatigue to the waves on a large lake, one the size of Lake Superior. Sometimes the waves lap in small and break gently, sometimes they are strong, steady rollers, and sometimes they come crashing in, whipped high by the wind and storm. But the waves are always there. It is my daily challenge to know when to wade, when to brace myself as I walk along the shore, and when to climb to higher ground.
April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her columns here.
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Thanks April, That is very good advice, and I think I have followed it too (except sometimes I let the electronic world be with me a lot!). Even a fifteen minute cat nap can be very restorative! Walking is always helpful, and listening to music at the same time is meditative.
The best advice ever. So well said. Judy
Diagnosed at 55 with treatment beginning immediately, and having been a hard-working, physical and robust individual before that (well, maybe not so much the last year or so prior as the cancer was doing it's thing)... learning to meter my energy has been a big learn for sure, and not one I have taken on particularly joyfully.
Thanks for the good write!
April, thank you for your wisdom. It will be 3 years in March that I was diagnosed. I haven't had a stem cell transplant. In fact I have been stable with the chemo meds I've been on & am very grateful for that. However, I too struggle with fatigue. Most of the time I try to talk myself out of it , thinking there's no reason to be feeling fatigued. It's usually when I've been trying to do too much . I do have to remember that what's happening to my body in the background does take a physical toll. So thank you for the reminder to take it easy, do what I can, rest when I need to, take care of myself & don't 'should' myself. Sue
I dont usually comment, but have enjoyed your last 2 articles so much.
Best of luck April.
I just returned from a lengthy vacation (to meet my granddaughter!) and dealt with the fatigue issue off and on throughout the entire time. Now that I am back and catching up at work and home, I find myself smacking my forehead and saying "duh, what works for you, April?" The comments above remind me that many of us struggle with this issue, and that we all find ways to cope every single day.
Thank you for confirmimg my thoughts! The fatigue is life altering some days. I feel guilty for not "doing". Keep up the great writing!
Thank you for sharing your helpful suggestions for how to live with the fatigue of this illness. As a new resident of "cancerland" I'm grateful for any information that's positive.
Fatigue is a tricky thing to sort. What is myeloma-related versus life-related. You make some good comments, April. Surrendering to it seems to be inevitable.
Thank you April for a practical method to combat fatigue, which is one of the most common patient concerns, not only in oncology. For those interested in a holistic medical conference specifically on this important topic, the American Holistic Medical Association has a wonderful meeting coming up in St. Louis: Gateway Medical Conference: Fatigue, The Modern Dilemma. It is open to professionals and interested public, April 17-21, 2013. Many related topics and experiential programs will be presented. Check it out on the web. In the meantime, breathe deeply! Jan
I was reading quotes from Madeleine L'Engle when I spotted the reference to multiple myeloma. My late husband, diagnosed in 1974, lived with the disease for 15 years. His attitude was amazing in that he did not "fight the disease" but sought to "live with" it. It sounds to me that you who face that choice have followed the path he did. He continued to live his life, adapting to the demands his health required, with integrity and humor. I do wonder how he would have traveled these days as he often had to back then, with 24 hour urine specimens. That must be a real challenge for airport security! Blessings upon all of you on your journeys, and savor those naps.
Great article! I have been feeling pretty punky lately - I've been on Revlimid for 6 years (or so) with some drug holidays of 3 or 6 months; once it was 18 months and once it was a year. My onc says to expect the drug holidays (when I am NOT taking Rev) to shorten as time goes on and the bad guys get more powerful in being able to come back sooner. Anyway, I take adderal to help keep me from being quite so fatigued and fading out and actually falling asleep during a conversation which is SO embarassing!
I liked the ideas you mentioned to dealing with the situation. Any other ideas from readers would be most appreciated.
Tom Courbat
dx 9/26/01