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Day 32: Recuperating and Listening to my body when I am tired, sleepy, sore and winded.

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When we recover, when we recuperate, we are taught to listen to our bodies and be sensitive and responsive to the messages we receive.

And I sure get a lot of messages. Which should I tune in to?

I find this advice annoying and confusing:

  • I am tired, so I won’t do much. Laze around the hotel room all day. Sound divine.
  • I am sleepy, so I will take a nap or two. Love them.
  • I am sore so I won’t exercise or walk. Feels better not to walk or exercise. Less pain. And less work.
  • I am winded, short of breath, so I will rest and not push myself. I am still sick and inflamed after all.

But:

  • In order to overcome my fatigue, I need to be active and exercise. The more I do, the more I can do. I know that to true for myself and just about everyone who is not acutely ill.
  • In order to get back to a normal sleep pattern, I need to avoid naps. My sleep is already disturbed by night sweats and my changing clinic schedule.
  • In order to rebuild lost muscle from my days in bed and the steroids, I need to do my strengthening exercises and my stretches. I will never get back to walking any distant relatively pain free if I don’t rebuild my muscles and regain the lost range of motion that occurred while in hospital. And while it may hurt, I feel so much better afterward and can walk so much further without pain as I put back the muscle bulk and movement that melted away so fast when I was so sick.
  • In order to build up my endurance, I need to walk and push myself a little. Again, I need some exertion to rebuild my exercise capacity.

So it seems the answer is the Buddha’s middle path of moderation:

  • Be active, but don’t overdo it and take short rests if needed. Know when to quit.
  • Nap, but keep them short and certainly no naps in the late afternoon or evening- even when I really want to sleep.
  • Do all the stretches and strengthening program from the physical therapy, but don’t strain or hurt myself.
  • Pace myself when I walk so I don’t get too breathless, but do walk.

Walk even when I am tired, sore, sleepy and winded.

And that is precisely what I did today.

Walking in Olympic Sculpture Park

The Wave by Richard Serra

Clinic tomorrow. Hope to have more results to share soon.

15 Responses

  1. You are looking great, Brian! Obviously taking the path of moderation is working for you. Keep up the good work!

  2. You are right. Ill or not, the key is to find a decent level of activities and rest.
    The toughest challenges are behind you…keep walking away from them. Your determination is inspiring and we are very happy to see how well you are doing.

    Stay strong,

    France

  3. I will print this out and paste it on the wall. Valuable advice and words of wisdom for all of us in the fatigue battle. It is good to get an update from you. Thinking back to your first announcement, I could not help having a combination of optimism and trepidation. Now it is a combination of joy and relief. Bless you Brian, and thanks for charting the course.

  4. You are one of my CLL heroes!! So proud of you and your family for taking on this challenge. Thank you for being an inspiration and for giving me hope…maybe I will see my kids get married and have children…maybe I will grow old enough to collect Social Security…maybe the future is not so bleak after all…
    Keep up the incredible progress. You have a whole community of CLL patients and families walking right behind you.
    Warm regards,
    Nan

  5. Keep moving forward! Have you heard anything about Eureka Therapeutics ET190L1-ARTEMIS? Duke is started a trial earlier this month. It is supposed to limit the CRS and still activate the killer T-cells. You have to have 2 prior therapy relapses, with one being Ibrutinib, to meet eligibility criteria, among others.

  6. Thank you for sharing your intermost thoughts and feelings. You are truly amazing. We are with you on this journey and feel your pain and your pleasure!

  7. It is wonderful that programs are beginning to include physical therapy and see it as a necessity for recovery. We need more places to finally see that as the cherry on top of the sundae. No point in recovering if you cannot enjoy life.

  8. I appreciate your conclusions about recuperation and recovery. I’m glad you are taking a balanced approach. I’ve long believed our modern society no longer appreciates the benefit of recuperation following an illness. I think antibiotics contributed to this. Take the medication, feel better and back to school or work. Flu infections often require recovery time, but some push through and return too soon. Off my soapbox now.
    I hope your stamina grows while your pain decreases!

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