CLL W & W Fatigue.

[Madprofessor22]

New here. Diagnosed 4yrs ago W & W. Numbers apparently low but I experience days of fatigue and frustrated that I have no desire to do anything. Pushing myself and feel lightheaded when walking. Just want to move myself but feel weighed down. Advice?

[Hidden]

Gravity rules. Despite my strong intent to get 'it' done some days I don't. And I'm learning, rather slowly, that most of 'it' can wait. In fact its a releif to acknowledge the world will muddle along with or without me. No negatives here, just happy to let myself off the self importance hook. I'm learning so much from my cll journey. Merry Christmas and happy holidays to all my cll partners.-bill

[Madprofessor22 in reply to Hidden]

Sometimes we just need validation and permission from someone who gets it. Thanks so much and a Merry Christmas to you.

[sue2412]

I’m in a similar point in my journey as you. 4 years W&W, fatigue, lethargy and and this strange feeling of lightheadness which is worse for me when I’m tired.

I don’t have any advice, I just keep pushing myself and then need to lie in a blackened room. If things at home don’t get done does it really matter.

Remember you aren’t alone, have a fabulous Christmas 🎄

[mcorroto]

Same experience here. I'm in W&W and am an endurance athlete. For most of my life physical activity has been my drug of choice. I feel so much better after a long bike ride or a session in the gym. I've wondered how to separate out the physical from the psychological. Is the fatigue from the CLL or is it mood centered? Any idea how to sort this out?

[Madprofessor22 in reply to mcorroto]

I must agree with 'DMary'...If you are able to get dressed and push yourself out the door, then it's likely to be mood related...but when you're struggling to get yourself together, and feel the need to just sit, then it's fatigue. I've also experienced a bit of both at the same time the last four days. And so, I applaud myself when I go down the elevator to check my mail. In the meanwhile, I make up 'To Do' lists and do what I can whenever I can in order to feel productive. It's OK to make the list and just sit down and be self reflective when fatigue really kicks in. Give yourself permission, and ignore what others may be thinking about the 'new you.' Askmehowiknow

[Hidden in reply to mcorroto]

Great Question. For me fatigue is an equal opportunity offender. Low mood with or without fatigue and fatigue with or without low mood. Trust in my docs is an essential part of wellness attitude for me and it required me to be fully engaged in my care. When I feel good I try to make the most of it-when I feel bad I rest. My gratitude for my situation is boundless. -be well-bill

[Madprofessor22 in reply to Hidden]

Hmmm..."Do the best you can with what you have." That's been my mantra. Suppose it fits here as well. Thanks bill!

[DMary]

Welcome Madprofessor22. I'm sorry that you're dealing with fatigue. It's a hard experience and it's a popular topic here. The answers I've read so far have been supportive and kind and that's what I've found here, too. I hope they all help.

The worst part of fatigue for me is that it's scary and leads to low mood. It's a frustrating cycle. I've been sick for a few weeks and physically unable to do much at all. As I get better I'm trying this - check in with my honest thoughts/feelings about the activity without making fatigue "good" and "low mood" bad.

If I'm sad or frustrated that I can't do something, it's probably fatigue. If I'm reluctant to get moving, or see that I'm looking for a way out of something, even pleasurable activity, it might be more mood related. I'm trying this because I've found that pushing through the inertia has great results if it's mood related, and just doesn't work when it's physical fatigue.

For example, I get dressed and put my boots on for a walk. Fatigue will send me back to bed or a chair right away. Just getting dressed is too much. A low mood will begin to lift just past the driveway and I'll be tired but energized when I get home.

But here's the trick for me, and the hardest part - no judgement. I'm not successful because I make the walk, or a failure if I don't. Either way I'm learning more about myself and my body and living with my particular brand of CLL right now. (Also in CLL - everything I learn about my body is subject to change.)

At least that's where I am today. Fatigue and it's cousin, low mood, both seem to come and go for me, and they both baffle many of us and most of our doctors. But here we can all share what we're discovering and that's often the most help.

I do hope you find your way to living well in spite of fatigue. Best wishes!

[Madprofessor22 in reply to DMary]

Validation and understanding without judgement, is most helpful. I often feel as though I'm perceived as being lazy and undependable. Adapting to the 'new me' is challenging, as you well know. I've always been the workaholic, and leader of new adventures...and now I sometimes feel a struggle just to walk across the room. It's odd how this fatigue comes out of nowhere and remains for a day, a week...It's difficult to make plans, and the interest isn't there much of the time. Isolation from family/friends doesn't help. Thank you as I figure this out.

[Hidden in reply to Madprofessor22]

Wow! I just sit here and u folks write my thoughts, how convienient. There is comfort in numbers.-thanks professor. BTW I can barely imagine the life I was so fortunate to live before getting sick. Fatigue can definitely do a number on my self perception. -onward!

.

[Hidden]

Thanks Mary. Thanks for taking the time to describe what many of us experience. love & strength.-bill

[Onmytime]

I started having a few bad days. I took a big leap (for me) and went on a low carb diet 10 weeks ago. I’ve read that cancer loves sugar - I decide low carb was the best way to get sugar out of my diet. The first two weeks were hard and my energy even lower. The past 8 weeks have been great with no low energy days!

Also, listen to your body and rest - you are taking care of “you” when you do!

[Madprofessor22 in reply to Onmytime]

Been doing that for the last four months, and I agree that I felt better. It's not quite so easy with the Christmas season, and I find myself derailing a bit. We do what we can for the moment and applaud every positive attempt no matter how small. A favorite quote for me has been,"If I cannot make great changes, I will make small ones in a GREAT way." On YOUR time of course.

[Awksom]

As strange as it may sound, take a walk. I had/have the same issues but i find that a 1-2 mile walk (or whatever distance works for you) does help me.

[lankisterguy Volunteer]

See the box on the upper right of your computer screen labeled "Related Posts" for many previous discussions.

Len

[Hazel33]

Whenever I have my check up and mention fatigue it is totally ignored. I am WW for 7 years. Why can’t fatigue be acknowledged by the doctors? Is it not part of their training?

[Madprofessor22 in reply to Hazel33]

I too don't understand why fatigue is 'flipped off' as a non symptom. The emotional aspects are not addressed to my satisfaction and the W & W 'diagnosis' doesn't 'cut it' with me. I'm not looking to start any meds, but I do expect more validation to my concerns. A term such as 'dormant stage' would make more sense than W & W which is so irritating to me, as it says nothing but implies that possible impelling 'doom and gloom' is in the future. Thanks everyone for the last three days of interaction with me. This is not my first cancer, but this one can't be 'cut out' and removed, and so it haunts me every day knowing that it is flowing through me and literally 'in charge.'