1. my legs feel weak as if they can't support me any more sort of like jelly.
2. I get very tired going up stairs
3. I have noticed that sometimes my arms feel like I don't have the strength to raise them
4. Up until about 6 months ago I think I was trying to fool myself into thinking that what I was feeling was just normal for a 71 year old person
5. I am worried that I won't be able to continue my part time job as a TA in a high school due to all the walking I have to do going from class to class. The feeling that I might not be able to work any more really scares me
6. I too have not told many people about my condition.....it's my way of pretending that I am fine
I am grateful to be part of this group. You have really helped me share what I'm feeling
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peggyp14
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Yes, I'm on watch and wait. I am lucky because I do get extra time between classes. My fear is that I won't be able to continue working too much longer. I am determined to keep on getting through my work day (half a day).....and allow myself to just rest when I get home.
By the end of the w&w, I had trouble with stairs. 7 months on ibrutinib and that is much better. I'm also a lot younger than you, 59. I'm retiring shortly though as it has caused high blood pressure that leads to a different kind of fatigue and confusion.
Do you sign a new contract each fall? If so, that may be the right time to tell your principal who perhaps could influence your schedule. Getting (re)hired and revealing a health issue at the same time should protect you from discrimination, if you need extra sick days, for example.
This is a great suggestion. Thank you. I know it is time for me to speak to my supervisor. I just hope she respects my privacy and keep it between the 2 of us.
The other day I went shopping for food & provisions - I got to the point that I needed to pick up loo roll - we ended up with the most expensive double quilted deluxe paper because I didn’t have the energy to walk another aisle - that’s fatigue to me. 😀
Hello, fatigue is part of this disease and I experience it and it is not a feeling of just bringing tired as my body just shuts down and I need to rest or take a nap so I have empathy. Why not tell people? Are they going to shun you away then if so they are not your true friends. I don’t get up with a microphone and tell the world but if I am not honest with my feeling and talking about them then I am at a disservice to myself. I am not looking for sympathy. This disease is real and should not be taken lightly and we need to be honest with how we feel. This has worked for me. Too tired to type anymore. Make it a great day.
I agree with other poster, check b12, mine was low when checked by a hospitalist when in hospital for heart issue. Also i have complained of fatigue for more than the 15 years I have had cll. My endocrinologist checked my iron recently to find my ferritin barely on the chart, my iron on general very low, and my iron saturation only 18% which is below the chart value which starts at 29%. My hematologists don’t even check my iron and I go to NCI designated cancer center. I don’t know but it seems like some of these things would be checked instead of blaming everything on cll.
Hi, thank you for sharing. I have nothing much new to add as the advice given is excellent. There's a stigma we face with CLL: just because we look fine, we should feel fine. Well, that's just not true. We all have really good days and really bad ones. I would tell the employer and see what they suggest. Best wishes for wisdom all around! ~Lisa
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First real night sweat
FCR vs imbruvica first line
Doc says it's usual to start treatment with doubling of WCC
