Moving Forward Despite Hemophilia Battle Fatigue

Moving Forward Despite Hemophilia Battle Fatigue

Boxes, boxes, and more boxes! We can’t seem to find a way to sift through the endless sea of those irritating but necessary cardboard contraptions containing pieces of our lives. We know that we cannot stop piecing together our lives in another place.

Moving forward appears to be the best option. We know the truths that encourage us to embrace our fatigue. We have confidence that life will return to normal and that fatigue will reframe itself to a sense of purpose and hope.

Those who are dealing with chronic illnesses know what it is like to deal with fatigue. When my youngest son had continuous hospitalizations, my family members understood how exhaustion rears its angry head. We thought: “Would these continuous bleeds ever stop?” I wondered how my son felt. He faced a level of weariness I will never understand. He did not have the vocabulary or the ability that I had to express how he felt. How did he feel about the chaos that hemophilia brought to our family?

Battle fatigue steals our joy if we let it. Rekindling our passion for being the best advocate that we can be opens doors to recovery and strength. I started to overcome my weariness by focusing on the needs of my family. I poured my energy into being a cheerleader for the MacDonald team. My response to fatigue provided my loved ones with the ability to catch the spirit and allow the possibility of hope to permeate the air. Sometimes, in the twinkling of an eye, hope replaces weariness. Joy replaces gloom.

While we are not facing life-altering situations that knock us to our knees all the time, we do sometimes face situations that leave us staggering to catch a breath. In the roughest of times, we turn to the support system of amazing people who graciously remind us that we are not alone.

And so, after speaking to a few of these supportive people, I tackle one more box. Perhaps I can rediscover a long, lost document or picture that reminds me of those who encircle me and love me for who I am. I tear through the tape and look at the contents of the box. I begin to smile, for I know that my greatest joy is having those closest to me stand with me. Fatigue gives way to laughter and to joy.

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Note: Hemophilia News Today 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 Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.

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Joe is the father of two sons with hemophilia. He and his wife Cazandra are active member in the bleeding disorders community and often facilitate workshops both locally and nationally. Joe is a pastor in the United Methodist Church and writes a blog about spirituality and faith. You may follow his blog at www.joekmac.com.

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