Other F-words we encounter in life with myelofibrosis, Part 2
How we can turn fatigue and frustration into a path forward
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Last in a series. Read part one.
In the first part of this series, I wrote about “the other F-words” we deal with as we go through life, whether we’re living with a rare blood cancer like myelofibrosis (MF) or other chronic health conditions. The truth is, the same words often challenge us in our careers, family life, and day-to-day interactions with others as well.
First on my short list were “facts” and “fear.” Next are “fatigue” and “frustration.” Here’s how we might turn those into a path forward toward two other F-words: “feeling fabulous!”
Fatigue
Fatigue is the No. 1 reported symptom associated with myelofibrosis. It may come in waves or be a constant reminder of one’s MF. We patients may feel a bit more tired doing daily activities than we used to. Or we may have days when we simply can’t get out of our favorite chair.
It can help to give ourselves grace and the awareness that this disease causes symptoms we can’t necessarily control or push through.
I believe that when dealing with fatigue, no matter how intense, it can help to manage our expectations.
If we usually have the most energy in the morning, we can plan around that, enjoying activities when we can. If we’re visiting with family or friends in the late afternoon or evening, we can remind ourselves that additional rest earlier in the day might be beneficial.
Staying active is a part of being as healthy as possible and helps to prevent cardiovascular disease and other medical complications. But what if we’re no longer able to walk our daily 2-mile loop? It doesn’t mean we have to give up walking. It means we have an opportunity to scale down according to our abilities, while still enjoying the emotional and physical benefits of a daily stroll.
A young cancer thriver I know told me she once had to set her sights on putting one foot in front of the other to go to the end of her street. When she got there, she experienced a feeling of accomplishment rather than disappointment that she couldn’t walk a mile. Over time, she increased her expectations and her mileage.
Frustration
We all feel frustration, some more than others. We might be frustrated with medications that help our underlying fatigue but cause other difficult side effects. Or, perhaps we’re frustrated with people who don’t understand what we’re living through, or who say things they think are helpful but really aren’t.
When we’re frustrated, finding ways to cope is important for our mental health.
Sharing how we feel can be powerful. When someone says, “But you look fine!” I’ll take a minute to say, “Thank you, I’m glad I don’t look unwell.” Then I might add that I don’t always feel fine. Or, I might say, “Today I might feel great, but honestly, yesterday I couldn’t leave the house.” This can help others understand my reality and my frustrations.
When symptoms alter our lifestyle, we can discuss it with our healthcare team. Perhaps there are better treatments or supportive care that can help us deal with it.
Also, if we’re frustrated with our healthcare system, spending hours dealing with insurance companies, or trying to find ways to meet the high treatment costs, there are people who can help. A social worker might be able to help sort through health insurance statements or apply for financial assistance. We also might be able to turn to counseling, meditation, yoga, therapeutic massage, or other tools that can lead to feeling more in control.
Whatever our frustrations and fears, and however fatigued we may feel some days, help can begin with acknowledging how we’re feeling. And that can pave the path to my final F-words: feeling more fabulous!
Note: Myelofibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myelofibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myelofibrosis.
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