I was diagnosed 5 yrs ago, am 46, and don’t have support.... the fatigue is wearing me... I am fairly healthy otherwise btw... but the stress/fatigue is wearing me... I try to remind myself to not worry about the stuff I can’t fix or change....and it’s very possible new treatments will come along... but................this weight on my shoulders is hard to shake.....waiting for the shoe to drop....
What do you do to deal?
Prayer is not my thing, hoping for concrete type ideas?
I’m 48 and was diagnosed 2 years ago. The stress of knowing we have this condition can be overwhelming at times. We feel empty and alone , by the way your not alone as long as this site is up and running. For a lot of us this is our support system and the only ones there for each other.
I deal with my worries by facts. This is a chronic condition as you know and if treatment is needed, we have a lot of great medication BTK to kick this out of us. I try and act as if I have nothing wrong with me because I don’t. My diagnosis was found by chance if I chosen not to have a biopsy I’d be sitting here without any concern. If I ever need treatment I’ll just take the pill or pills for a few years and hopefully be MRD negative for years maybe till I’m 90. Being tired can be a problem and if it’s a big issue you should bring it up to your Dr. and if that shoe drops it’s going to fall on great med that will make you better. I take Xanax to cope as well. Best wishes John
Hi there,
You mentioned in your last post that you had not told anyone, not even your family I think and that they relied on you to look after them. Is that still the case because that can be a big cause of stress and fatigue and I would urge you to share your health situation with them.
Regarding treatments, we now have amazing treatments available compared to when you were originally diagnosed 5 years ago so there is reason to be massively optimistic especially as you have had all those years on watch and wait.
You said before that you eat well and look after yourself, well done - that will help you to feel as well as you can physically. Fatigue is a problem for many CLL patients on watch and wait so please talk to your doctor and tell them how you are feeling.
There are things you can do to help your situation but, in addition, perhaps a confidential, professional counsellor would help you. Please don't live these good years without allowing your family to support you, they would be very sad about that.
With best wishes
Jackie
Hi DFM!
You embrace the No 1 issue, the Living With CLL.
Fatigue. Mainly due to the cytokines that are released. Not much one do to change that - other than treatment.
I am with Jm954 , Family and friends not knowing is a big burden, and will only add to your fatigue.
AND... as Jackie says - other causes for fatigue do exist! 
So... get your other bloods checked. eg. Thyroid, sugars, B12 Folate and Ferritin etc etc.
BP, essential to have good body weight...
Check out Pinned Posts. "30 tips..." and "12 tips..."have a mountain of helpful info.
Jig
Ask your doctor for a local support group. Doing this alone not only affects your physical health but also your mental health. Facing the unknown is scary but surrounding yourself with people who understand what you are going through will help immensely. Reach out, talk, laugh, cry. Whatever it takes.
Hi DFM,
I'm guessing at 46 you are still working in some way, but if so is there any way that could change to be more part time?
The only fix I think is excercise and then rest. Easy to say but very hard to do. Try to get as fit as you are able to combat it. So easy to say . . .
If you care to post a bit more on your situation then I'm thinking folks here might perhaps be able to help with more specific, and more useful answers.
Wishing you well,
Ernest
Hi DFM...
You need support...we're here to provide it. Living with a cancer diagnosis is tough. Watch and wait is tough. Waiting for the other shoe to drop is tough.
I've been living with cancer for many, many years. My first diagnosis was when I was 36...my most recent diagnosis was just a few months ago at 55 years young. Between then and now, I've been diagnosed with five different cancers, endured numerous surgeries, chemotherapy (I start another round of chemo next week) and constant (very expensive) drugs.
I bring this up because I have no choice but to live with it...it's better than the alternative.
I focus on the things worth living for...it keeps me going.
I was diagnosed at 54 and went for 9 months without telling anyone other than my partner and our son. In the end I found it more stressful to keep it a secret than to just tell everyone — so that’s what I did! I’m 72 now and have had 100s of blood tests, about 80 blood and IVIG transfusions, 11 rounds of FCR, Rituximab alone 6 times, AIHA 3 times, serious doses of Prednisone for many months at a time, and many Filgrastim injections for neutropenia. I’m currently 21 months into a 24-month Venetoclax clinical trial and clinically in remission.
It is what it is! But I’m pleased to say that the treatment options just get better and better.
I live in New Zealand and have travelled overseas more than 60 times since 2001 (my year of diagnosis). It all comes down to adjusting your expectations as to how your life is going to be for the future. Stay positive! I can’t reinforce that enough.
All those inspiring pep talks we give ourselves don't work for long!
You didn't say if you are having treatment yet. Many on this list serv have had awful fatigue that was helped by treatment.
Virginia
Chilblains and CLL
My wife and I both got covid
Waiting
Frustrated 
CLL and Fatigue
