CLL Support Association
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Tired

Good Morning All;

The worst thing about this monkey we are carrying around on our shoulders is being tired all the time.

I feel the best in the mornings although I still wake up tired , but around 3:00 in the afternoon I start running out of energy. By 5:00 it is all i can do to stay awake.

Anybody else feel this way? Other than that I don't have any other issues.

Diagnosed in 2015 and still on W&W

james

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Wow, I could of made this post. I sleep really good, the kind of sleep you should wake up and say I feel great...but I always wake up tired. I feel "the best" though in the morning/early after noon but around 3pm I am pretty much done for the day in terms of activity. I generally do not go to sleep until later, maybe 11...but I might read, watch stupid TV or something most of the evening.

My wife and I are trying to figure out how to be "morning people" as previously we always slept late and worked all hours of the night.

As an aside, I feel the last 2 weeks I have felt noticeably better, less fatigue in the morning and even slightly less in the evening.

Scott

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Thanks, it helps knowing I am not the only one.

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I hit the 3:00 pm brick wall for over 12 years...☹️

Our CLL fatigue is not really fatigue it's a sick response.. that get sturned on by misplaced immune response chemicals.. think SICK not TIRED.

Surprisingly ..

daily brisk walks improved the situation

~chris

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Thanks for the input

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To me, thinking I am SICK adds depression to fatigue. I am TIRED but I enjoy the challenge of overcoming it with coffee, exercise, work, dog walks, a 20 minute nap and social interactions.

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My best to feeling better soon. Not knowing your numbers has your doctor talked about treatment? I don't sleep well at night, so that doesn't help my situation and no naps. I do get that 'I have to go to bed and have to do it now' feeling at times. Mind usually happens around 6 pm. Take care and do hope you feel less tired soon. Carole

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Thankyou and best of wishes to you also

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That sounds way too familiar. I have found that daily walks help, but they don't change the pattern for me. I try not to schedule anything past 2pm. That's when I start to fade and by 3 I can't stay upright. Sometimes I nap, but I'm not always sleepy, just wiped out. I appreciate Chris's suggestion to think "sick" not "tired" because that really explains it.

I hope you find encouragement in knowing you have lots of good company with this.

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Thank you for your nice note, DMary. Yep. I sure identify.

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We are all in this together for better or worse

james

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Coffee after lunch does wonders. Also, when I am busy and occupied, I’m never tired.

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I like a good coffee as much as the next man, but I'm not too chuffed at what Mrs ygtgo bought me for my birthday ...

ebay.co.uk/i/252508682358?c... Manage Your Content and Devices 06&abcId=&adtype=pla&merchantid=6995734&poi=&googleloc=9046974&device=c&campaignid=207297426&crdt=0

What worries me most is .... some of those 'grinds' look pretty sharp!

ygtgo

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Sorry to be dim, but why coffee enemas? Didn’t they used to use soapy water?

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I've no idea

... but being an engineer I do know that the QUALITY STEEL ENEMA BUCKET won't be 'stainless' for very long !

It also comes with 1 x Easy hang hook .... I've got my suspicions as to what Mrs ygtgo has planned for that.

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love it!

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I think we need to get Mrs. Ygtgo on here - equal time!

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She says ... "women who seek equality with men lack ambition "

... and as long as she is looking over my shoulder, I say it too !

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Haha. I think they do those in Mexico and maybe some other countries. Never heard of it in the US.

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I am male 67 dx 18months on W&W. I think there is mental factor into our tiredness. I have been feeling very low , with dry tongue, heavy eyes and feeling rotton. However, as u feel good if busy, I felt great when I went on vacation last year. I dont know how to explain.

best

vinnet

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I never did feel ugly on watch & wait. I had periods of time where I didn't feel exactly right. My problem is getting enough sleep at night. I woke this morning at 3:30 thought I could go back to sleep (funny thought), then put a meditation tape on that I'd listened to before I went to sleep. That did help me to relax and then I was at the gym at 6:30 and I never ever go that early. Took my Imbruvica at 8:00 am and waiting an hour to have coffee. Do you exercise. I know that doesn't sound pleasant when you don't feel good and the fact that you felt good on vacation sound like you are mentally tired from all of this. Do you know how close to treatment you may be. Let me know. Carole

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Thanks Carole.

I am in india and there is no cll expert. I am told that cll is an individial disease while statistics only represent herd numbers. My onco says that my disease seems to be of indolent variety but nothing can be predicted as to its progression. I need to get blood test every 4 to 6 months. I exercise everyday, 30 minutes of YOGA and 30 minutes breathing. But I dont feel good. Past few weeks have been worse.

I dont know how to get out of this malaise, but I am sure that there is a mental issue which i cannot figureout.

vinnet

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It’s purpose! Something to do! Go on vacation again!

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Thanks Barbgee. I think "PURPOSE" cud be the key. At present, I do not even feel like going for vacation. I now intend to figure out if i can identify some motivation/ purpose for living and go after it.

vinnet

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I tried to get my garden planted yesterday ( 25 feet x 50 feet ) then went to work for about three hours and came home drained

james

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Thanks james. Garden work and three hour work is impressive!!!

I feel drained thruout , feel like clenching my teeth and keep lying down. Vitb12 and vitd3 are in normal range, though towards closer to lower limits.

vinnet

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I have two cups in the morning. I'm afraid to drink coffee in the afternoon. Think for me it might make me sleep even less. I think whatever works. Everyone's different. Carole

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I am also in W&W. My tiredness comes in spurts. Honestly don't know if it is CLL related, but I expect it is to a point. But yes, some days when I get home from work at 3:00, I need a nap. Instead of assuming the position in bed, I find if I change clothes and head to the gym it is really a good way to re-charge. Maybe try a good brisk walk and see if that helps re-charge your batteries. I also find that on the days I work out, I sleep better at night.

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Excellent! I was at the gym early this morning and I never go until at least 12:30. It does give a person energy. Walking is good to. Thanks for the note. Carole

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That is exactly how my husband feels every day!! Going to ask for a nutrition consult at MDA when we go next week -

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I also have been reading and researching ways to improve his fatigue because I feel helpless watching him struggle with this loss of energy - he is a big tough retired marine so it really gets him down - I have read that exercise is great and to make yourself get up and do a little something even if just a short walk or a flight of stairs - we are going to try this and also try eating more foods with vitamins and minerals - less sweets and more fruit yogurt cereal etc -

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Nutrition is the key and exercise is just the thing when you're not feeling good. There's something about it that gives one energy. Be sure and give it a try. Carole

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Every day! If I don’t get things accomplished in the morning, they often just don’t get done. I am on w&w too,

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Yes James, that's exactly how I feel and still feel after treatment, God bless, Terry

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This is me! I work only four days a week and by the last day am ready for my bed! 17 months from diagnosis on watch and wait. Found the spoon theory helped in the early days and I just give in to the tiredness and stop whatever I’m doing (when not at work but I have a desk job).

I too don’t have a lot of issues apart from ear infections in the early days... I can feel when my body’s fighting something so I just slow down. Think family and friends are used to me by now!

Guess the answer is just to pace ourselves and grab rest while we can?!

Best of luck - glad you don’t have many more symptoms🙂

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Ditto me too. Felt rotten 3 pm yesterday, so thought get out there in fresh air and do a bit of gardening. Did half hour and felt much worse, had to crawl in the sack for an hour to regenerate.😴

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Morning all! After nearly 3 yrs on W&W I began to feel like a specialist at this fatigue issue! V important issue. Sleepiness... eyelid condition. Tired... muscle condition. Fatigue is of the bone. Bone deep weariness. That's what CLL does to us.

I am in my 2nd week FCR cycle 1. I feel like the heavy coat of CLL has been lifted. Alarming as it puts in stark contrast W&W feel. Anyone share that experience?

My W&W fatigue busting habits. Good food. Hydrate. Regular rest. ...and exercise. I did loads of exercise and gym work and used a good Personal Trainer. My programs designed around how I felt on the day. Programs never severe. Mainly movement based... pushing body fluids around. Loads of stretching. Helped me a lot.

Good luck in finding your own antidote to this particular monkey!

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Thanks for sharing re personal trainer. May give it a go - I do Pilates for my scoliosis which can vary from gentle stretching to working with weights/balance work and working in a class where the instructor offers three levels for each exercise, I always feel better for it. No Zumba for me - slow and steady is definitely the best.

We have ways round this particiular mountain - I think the first step is acceptance! 🧘🏻‍♀️

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Totally agree. WRT exercise... I have always done loads. Cycling mountain biking gym and very used to pushing my heart lungs and physiology to max. Since CLL backed off. Banned from mountain biking cos of large spleen and risk of fall off. I do silly stuff. So in gym since with my excellent PT I will often feel awful. Just want to sit down. However on starting to move... walk treadmill 5mins. Row moderate 500m. Body weight squats. Few dumbbell presses invariably after 15mins I feel better. Ache goes. More energy. Lasts all day. To do with moving body fluids around. Lighting up muscles. Getting warm mildly sweaty seems to help. It's my anecdotal evidence. But... I am a lot fitter and stronger after 3 yrs W&W than I was at diagnosis. You need a good PT tho. Cos it's training with out pushing max effort.

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Jig

How old r u? It is very heartening to read that u r lot fitter and stronger than 3 yrs ago...

I am 67, male, 18months in w&w and hoping for a very very long w&w..

I do 30 mins yoga and 30mins breathing exercises. Maybe i need to add more exercise.Any suggestions?

vinnet

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I am 61. Yoga is good. Altho not my cup of tea! My PT add a mixture of aerobic work. Resistance work... free weights, body weight, resistance bands and masses of core work. Always with stretching. I am lucky to have an excellent PT. Knowledgeable. Interested. Sensible. Sadly not all are that good.

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Jig

PT can suggest, but you seem to have sufficient energy to execute his advise!! My problem is after yoga/ pranayam , I dont fell fresh or energetic.

I think that SICK response appears to be the culprit in my case. However, I am very keen to follow any advise/ guidance which will improve my qol. I am fully retired and so time is no issue.

best

vinnet

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Ahhh time wealthy. Me too. Nice! Yerrr you may need to tweak intensity not achievable with yoga. Movement maybe key... More than stretch. Much of how we feel with CLL esp on WnW is due to cytokines produces by CLL cells. So one feels pre viral-like. Without fever. Now that I have started FCR I feel normal again. Throwing into stark contrast how rubbish I felt on WnW.

Are you a gym-junky?

I hope to focus on WnW once I am done with chemo... looking at improving qol. Not sure if there is good evidence for any intervention. CLL is heterogeneous, diverse and fluid. As indeed evidenced by the contents of this forum. Making this forum all the more important. Share. Support. Inform.

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Jig

I have never used gym!!

But I can include walking, which shud provide movement benefit.

Why did u start chemo? My onco says that chemo has its own risks and will only give chemo to me when my blood numbers are out of range.

I will increase movement and see the effect. My strategy/ desire is have 10 yr w&w with reasonably good QOL.

vinnet

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Walking good. Building up to brisk walking. Ideally good to get sl sweaty and sl short of breath. ie be able still to walk and talk...

The decision to start chemo is tricky. I think the trend is to start sooner than later. There are a number of issues. Essentially disease burdon. I had lots of lymph nodes growth. Spleen doubled in size. White cell count rise. Doubling time. Anaemia. Lowering platelets. How you feel. Etc!

To be honest I procrastinated... in the end I just needed / wanted relief. And my anaemia count increased a tad.

Is your consultant a CLL specialist? Do tou have good relationship? Have you had a 2nd opinion?

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Jig

As I wrote, i am in india, where we have no onco who calls himself CLL specialist. Every onco treats every cancer..

I feel rotton, weak. There are NO other symptoms like node or spleen etc.

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Jig

I came across an article on curcumin advantage. Did your CLL specialist advise any such medication?

The addition of arabinoxylan to curcumin therapy is shown to be beneficial to early stage CLL patients. Arabinoxylan possesses anti-inflammatory, pro-apoptotic and immunostimulatory effects [6]. A group of researchers observed 20% decreased absolute lymphocyte count in 22% CLL patients of the study when arabinoxylan was added to curcumin [6]. Also, CD4 and CD8 T-lymphocyte percentages increased in these patients [6].

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Do send me a link to the article. My own research and search threw up a ton of stuff including turmeric. I eat a lot of home made curry. My own. Oft thought I felt better day after when on WnW. In fact took turmeric, pepper, ginger combo for a while. I thought it improved my symptoms. But it did nothing for my blood counts. I never found any proper evidence for claims of enhancing apoptosis. What I would call proper peer reviewed evidence. It is a food and does not come under the same controls as medicines.

What is your view? I would be open to be persuaded otherwise.

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I’m so glad we can talk here about this fatigue. My specialist said he doesn’t treat if fatigue is your only severe symptom. I understand that but feel like some sort of cancer faker when family or friends says “I’m tired too” and go on to complain about how everyone is tired as they age. Are they this tired? Really? I’m in w & w for 8 years and I have cut conversations very short if the comparison game begins. Like the others here exercise helps but so does choosing how I use my energy bank. There is only so much in a day and I’m trtung to use it on things that are worthwhile. I’m on sick leave at the moment due to 8 month cough and damaged vocal chords. I’m a teacher and am hoping I can go back part time for a few more years. Will see. I found if I accept my fatigue and do all I can (exercise, lots of water, fruits and veg) then I’m not blaming myself. Hang in there and adjust to what your body’s telling you.

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Good to read that u r on w&w for 8 yrs.

Anything special u did to get this 8 year w&w? I am 18months w&w and pray to have 10 year w&w!!!

vinnet

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Not clear if it’s anything I did. I was vegan for 2 years. That helped me focus on nutrition but my numbers still climbed. I think it’s sheer luck really. If there’s one thing this disease has taught me is to let go of the idea that I can control it. Not an easy lesson and on some days I am delusional lol but I’m not going to let it define me. Enjoy each day as best as you can.

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Thanks..

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Sounds like you're doing what you should be. Eight years on watch & wait, Wow! This is the greatest place to come and vent or share what's going on. I am so happy to have found this site. Post often. People are here for you. My best. Carole

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Good to read that u r on w&w for 8 yrs.

Anything special u did to get this 8 year w&w? I am 18months w&w and pray to have 10 year w&w!!!

vinnet

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My husband battles the fatigue every day too. He is currently on Imbruvica, since March 2016 (diagnosed in 2011) went thru all chemos and CART clinical trial in Jan 2016, none of them worked. Any energy he has is in the early day and by 3 pm hes done. We have no social life after 3 pm..... he had tired walking in the evening with me when I walk our dogs, but most of the time he is just done for the night.

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My monkey jumps on without previous notice.

I am on my last month of planned treatment and some days the monkey doesn't appear and some days its already there when wake up

i have noticed that if I maintain a planned effort schedule and do a little excersise it gets better

all the best

cg

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Absolutely on the exercise.

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That’s pretty much my daily routine. Sometimes I only make it until noon.

I will be starting Ibrutinib in the next few weeks.

Hang in there.

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I feel the same way! You are not alone!!

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Being tired is my main symptom just completed 7 rounds of fluderabine. I'm still working as an educational assistant in a grade 7 class and by 3:00 I'm done. I also hear others complaining about how tired they are. Like cllcanada said it's our "sickness". I do grieve the old me, so you are not alone.

Chris 😴😴😴

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Interesting how 3:00 seems to be the cut off point for so many.

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Hi James,

I can only echo what so many others have said. You are NOT alone - lots of us feel this way.

Tiredness in the afternoons was the first symptom of CLL that I had. (I didn't know I had CLL at the time). I kept fighting the tiredness - drinking coffee, going for walks, pushing myself to do stuff. Those things helped a bit but weren't the full answer. If I did manage to keep going through the afternoon, I'd be zonked out like a zombie in the evening.

Eventually I decided I would do what my body seemed to be crying out for - I went to bed in the afternoons. O what bliss. I would sleep for just over an hour and although I'd be groggy when I woke up, it meant I was functional in evenings again.

Even now, I usually sleep in afternoons, though the hours vary and sometimes I manage to do without the sleep. It's NOT a convenient routine, and I wish I wasn't this way, but it's my way of surviving and getting the most functional hours in a day. Often I'm still very alert and active at 1 in the morning!

Different people find different ways of dealing with the afternoon exhaustion, but this has become my routine now. We have stuck a notice on our front door, saying "Please do NOT ring doorbell between 4 and 6 pm. Someone is sleeping".

When I was on Idelalisib, it was amazing how my energy started to return and I was managing better in afternoons. Then I had to stop the Idelalisib, and being on Ibrutinib hasn't had the same effect - well not as yet.

I hope you find a solution that works for you...

Best wishes,

Paula

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thanks , we are all in this together for better or worse

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James I am no longer on W&W and started treatment in the MDA trial of I+V in September. I feel fine and don't really wake up tired but by 3:00 or 3:30 I need a nap. So I take one if I need it. Some days I don't. I've really never had the fatigue that most CLL'ers experience for which I am thankful. Best wishes.

Paula

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Good morning, BlueGillfisherman, from the USA,

After reading your post and all the replies, I canofficially claim to be a member of this “sick/tired” club since Jan., 2014 diagnosis. (I like Chris’s statement that the fatigue is caused by CLL!). My days are mostly like everyone’s with feeling as if I have hit a brick wall around 3:00, except I am still recovering from a second intestinal surgery in ten months which has also impacted my energy levels. My first surgery was for colon cancer, tumor successfully removed, thank goodness. The second was for a bizarrely infected area where my appendix had been, but had disappeared. I also am severely introverted so after a fairly active day (for me), I need to spend time in the quiet to recharge my energy. All your posts help me realize that this is “my norm”, but I try to stay positive, to exercise, and to spend time with family and friends, especially in the morning and early afternoon. I have just recently emphasized my fatigue problem to my PCP and will also share it with my immunologist and my hematologist. Hopefully with all of us sharing ideas, I may learn the best health practices for me to better control the fatigue.

I do appreciate all your suggestions and have tried them with some positive results. This community has been one of my best discoveries since my CLL diagnosis. Thanks to all!

Wishing good days and good health to all.

SMS

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I don't want to be 'sick' so when I run out of steam I just say I'm tired or it's time to go to bed. I'm back on Imbruvica as of Tuesday at 140 mg. Will see if I can tolerate that. The last two days I've felt pretty good, but also had some decent sleep. Carole

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3 years w&w...I have noticed that the fatigue is less for the past 3 weeks. In my case there seems to be a direct link between the length of days and my fatigue. I was diagnosed with Seasonal Affective disorder (SAD) several years ago and my fatigue is worse in the winter...I feel much better now and through the summer. I do admit to getting 8 to 9 hours sleep each night. ☀️☀️

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Hi, Nanno77,

Glad to hear your fatigue may be lifting because winter is ending and your SADD symptoms are decreasing. Amazingly, for me, I am not looking forward to hot weather. I am adversely affected by heat so I must stay in AC all summer. 😞 By August, I start feeling the symptoms of SADD. I push on through each day awaiting the first cool days of autumn.

We all walk our own ways through this life. Stay strong and positive and enjoy each day, that is my philosophy.

Wishing good days and good health to all.

SMS

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Just the same here. I make sure that anything I need to do I do in the mornings because by 3pm I often feel that if I don't lie down I will fall down. I can sleep for up to two hours some afternoons but I know that when I wake up I can at least enjoy my evenings. Interestingly, if I'm away from my usual routine eg visiting another town, or having a break, the novelty often keeps me going and I can manage a few days without the nap. I do pay for it when I get home though, often having to take to my bed for a couple of days. I'm full of admiration for my fellow/sister CLLers who fit in going to work and caring for a family. As a retired person I can at least please myself. I do try to fit in a walk or have some other exercise every day. My haemoglobin count is less than ten now, so I guess it's not surprising that I get tired.

Fight it when you can. Give in when you need to. Go well.

Beattie

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I know how everyone feels. I'm tired a lot. Let begin by telling my age 73 ,last year in June I powered wash our home felt fantastic. Then in August of 2017 started imbruvica. Was ok till a month ago then the tired feeling kicked in. I don't know if it's the cll imbruvica or age, but I'm always busy doing something. Cooking ,cleaning, the usual stuff also now spraying outside for ants. Wow ,just looking at that the wonder I'm tired lol. I fizzle out around 3:00 pm also. Went to the Dr. On Monday and he said looking at your blood work doesn't even look like you have cll. He didn't say the word I wanted to hear -- remission, but I am so happy with the way imbruvica has helped me. Last year had to have many red blood and platelets transfusions. We are not in this alone I thank God I found this post because it has helped me so much. Very informative. I pray for all of you to have a happy healthful life . God Bless all of you. Stay strong. 😘❤️🙏🏻

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I'm right up there with you Corkyrissa. Thank goodness my kids are raised and I just have myself to think about. Cannot imagine having this and having a family or work. I posted above that 3:00 seems to be many peoples cut off time. Interesting. This is the greatest site. We can come and share our problems with people who totally understand. Wishing you the best. Carole

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our kids are raised also , I just hate going to bed early and my wife sitting up by herself for hours on end

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CLL just diagnosed this February but have had fatigue for about 5 yrs and may have had CLL that long - who knows. Fatigue much worse since last November- feel like I have spent the past 6 months in bed. I make SO many plans and then cancel them because I can’t shower and get ready. On WW with next labs in mid June. This is not living.

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Hang in there and don't give up. Come here often to share what you're going through with all the others with our disease. We all understand. I do the plan/cancel myself, but I don't beat myself up about it. Do you exercise. Even when you feel you can't, make yourself walk or if you can go to a gym. I find the treadmill gives me energy. As I said, come share often. It really helps. My best. Carole

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I was exhausted last year because I was very anemic . Hemoglobin was very low. After transfusions started to feel good and look like I rejoined the living. I was so pale and slept all the time. Wishing you all the best.

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I have the EXACT same problem. Sometime between 3 and 5pm the curtain drops and I collapse, no matter where I am or what I'm doing or how busy I might be. If in my office, I literally pass out for 40-60 minutes. If driving, I have to pull over to the side of the road and sleep in my car. I also wake up exhausted in the mornings and it takes me about an hour to slowly "boot up". I have evening training sessions at the gym 2x/wk and speed walk a mile there but the other day I could barely walk and couldn't make it thru the workout. Had to Uber home and go to bed. I'm untreated so far but about to start treatment this week with Gazyva & ibrutinib which they tell me will bring immediate relief.

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Thanks Tim

hope it works great for you ,please let me know how it goes

james

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Hi TimHB.

I did Gazyva in 2015 now I'm on ibrutinib since August 2017. Doing very good on ibrutinib still a little tired. Wishing you the best of luck.

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CLL, no treatment x 4.5 years; now they may have CML and want yo treat that.

64 yo, male.

anyway, i feel "sick" (tired) when i WAKE UP. later is "ok."

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I have been on the tired plan; for a long time; still on "wait and see"; have read "Chronic Fatigue" is a side effect of CLL. I never make it through a day without being totally wiped out of energy;

i take naps; everyday; usually for 1 to 2 hours; also I'm sure my age is an issue, I'm 69.

plus take other meds daily for other things. Diagnosed about 2015 also.

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I go to a Reiki healing center once a week to work on other people and also get treated, this is at night and I cannot tell you how hard it is to drag myself to the center. Surprisingly though I end up with a ton of energy. We work for about 2 hours on other people.

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Yes, I can definitely identify with tiredness by 2:00 pm everyday. Have to lay down and have no motivation. I can’t sleep nights for night sweats and restlessness. I rarely nap during day but have no energy. I’m on W&W since 2016

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That sounds so familiar.... I hit the 2pm wall, I kinda like Chris view as I think I've been a little hard on myself by thinking lazy. My schedule is hectic, racing up the motorway to work at 7.30am where I do a managerial job in children's social work... Many afternoons I've tried to control my rolling eyes and yawning in meetings... Usually getting home around 6.30 - 7.30... I'm just glad that I'm not alone which means I'm not just feeling lazy and it's not just an age thing.

Loran 🌻

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