Just how tired are we?
ususally if my granddaughters are here or I have to go the the store. However, I have to spend a day or two being more sedentary to recoup.
I just wanted to know how everyone else is dealing with the tiredness? I personally feel like such a waste of good air, compared to how my life used to be so busy active and physically fit. I also have had such a extreme amount of weight gain. I haven't weighted this much since I was pregnant 26 years ago.
Hope you all will share how the tiredness has effected your life.
Thanks for the support,
Theresa
Comments
-
Tired
Hi Theresa. So sorry you are going through such a terrible time. I am not on chemo now but I well remember the extreme, overwhelming tiredness. I hope the day comes for you when you can be off chemo. I too had days/weeks/months where the most I did was go to the bathroom and feed the cat, it took all I had to just get a bath. It sounds like you might be having some depression too-who wouldn't. I don't know if you are on antidepressant, might help a little. I too gained 60 pounds, now 4 years later I am feeling good enough to start getting back in shape. You are not a waste, you are going through a lot of hell, the chemo is very hard on some people. Try to talk to your doctor about how you are feeling, maybe they can adjust your medication, try an antidepressent or try something to help you more. I hope there is some relief for you.
Pam0 -
Tired
Theresa,
I understand. I've been on chemo since 8/07 with breaks for surgeries or toxicity. Tired follows me and builds up in my system it seems. Irinitecon kicked my butt! As a fellow stage IV'er, I have tried to balance quanity vs quality. I am always chasing NED and that makes it difficult for me to even report the full side effects I'm experiencing because I'm afraid they will reduce dosages or pull me off somthing all together. I already don't have a good track record with chemo working and there isn't much left, so I really hesitate.
If I spend a day doing "normal" things, it takes at least the next day of laying around to feel better. I just had an extra 1 1/2 weeks off chemo (gave me a total of 2 1/2 wks off) which helped. This weekend I went on a college visitation with my youngest (I managed to walk the whole way with a couple breaks - yeah!) and then had the family here on Sunday. I spent Monday and Tuesday in my pj's resting. Doctor appts have the same effect. I worked the first year of treatments so this is a tremendous change. I'm not the same person as bc (before canzer) in many ways. My energy level is only one of them. *I* really have changed, too.
Do you think it's time to re-evaluate your chemo cocktail? Maybe a reduction in dosage, getting it less often, or a change of meds? If there isn't a marked improvement, is it worth it at the current levels? Or, maybe your doctor can give some premeds that would help. Weight gain: are you on any steroids? I gained 20# on folfox because of the decadron I was on.
It also sounds like you might be fighting either depression (medical term and I can't diagnose you cuz I ain't no doctor and can't be diagnosed over the internet anyway) or maybe just 'the blues'. Depression you should talk to your doctor about. The blues, I'll try to address - we all get that sometimes. You probably already know my only rule - I have fun every.single.day. No exceptions. I make fun of everything I can. I watch comedy central, read funny books, watch youtube, call friends that cheer me, listen to good music....something. I have a file in my email of every funny comic I've ever received and have a file of old jokes and stuff from my office days. Some days I feel like laying in my haze, but I force myself to do something that makes me laugh. (alright, when I'm feeling really sick, a smile is all I can muster) It helps with energy. That doesn't mean I run to the mall, but it makes life enjoyable. I don't just want to be alive, I want to LIVE. That is not the same thing I thought of 2 years ago, but enjoying each day is enough for now.
I also have a gratitude journal. I journal and even have started to blog on this site a little, but my gratitude journal is different. I started it many years ago. Before bed every night I write at least 5 things that I'm grateful for that day. It is hard somedays, but you will find yourself looking for things all day long to write that night. Sometimes I'm grateful for silly things, sometimes big things. I have trouble limiting myself to 5 most days!
What does all of that have to do with being tired? I dunno, but I know it DOES! The mind, body, spirit connection is very real. I don't know if this answers anything for you but I hope it makes you feel less alone. You are NOT alone. We are here.
Take care, dear friend,
Kimby0 -
Same for me
Hi there I am stage three and this week is my last treatment for now.I have been doing chemo since Sept...I had a CEA test done to see if my liver and bladder are ok and I need a coloscopy to deterine if thats ok too..Then I will have a HUGE BBQ to celebrate...The reason I am telling you all of this is because you NEED to find something in the furture to look forward to...I am going to the Jersey shore for a week this summer and I have a senior graduating this June..So party party party and lots of plans to make....
Talk to your doc and see if he can reduce your meds alittle to see if that works....I am always tired..I am 45 years old and still work..I feel like the more you try to keep your regular routine going the better you will feel physically and mentaly..It is very hard to do but just read you body signals.There is no crime in resting and know your limits...I have had to pass on alot of activities I used to do because I knew it would be to much for me..Dissapointing yes but you have to do whats best for you...
Try to keep positive I know how hard it is with all the side effects and what you are going through with head games and I also know how sick you can become of people telling you to stay positive but really really try it does help...Good luck keep us posted..God Bless Julie0 -
Mine was a trip to the Spa in Palm Springs....Julie 44 said:Same for me
Hi there I am stage three and this week is my last treatment for now.I have been doing chemo since Sept...I had a CEA test done to see if my liver and bladder are ok and I need a coloscopy to deterine if thats ok too..Then I will have a HUGE BBQ to celebrate...The reason I am telling you all of this is because you NEED to find something in the furture to look forward to...I am going to the Jersey shore for a week this summer and I have a senior graduating this June..So party party party and lots of plans to make....
Talk to your doc and see if he can reduce your meds alittle to see if that works....I am always tired..I am 45 years old and still work..I feel like the more you try to keep your regular routine going the better you will feel physically and mentaly..It is very hard to do but just read you body signals.There is no crime in resting and know your limits...I have had to pass on alot of activities I used to do because I knew it would be to much for me..Dissapointing yes but you have to do whats best for you...
Try to keep positive I know how hard it is with all the side effects and what you are going through with head games and I also know how sick you can become of people telling you to stay positive but really really try it does help...Good luck keep us posted..God Bless Julie
I can't agree more with Julie.
I was a stage III rectal cancer, with 9 bowel obstructions (one required ANOTHER hospitalization with 3 inches of small bowel removed...sigh...), and then a second diagnosis of cancer, stage II breast cancer, 6 months later...
I used the word 'weary'.
I set my mind on going to a spa in Palm Springs that I had visited before. So, I had good memories, and good visuals. After treatment....my final was rads for the breast cancer, 2 years after my first diagnosis...I went to the spa, for 3 days of glory, by myself. It helped get me thru many, many tough moments to be able to close my eyes, and imagine I was lounging by the pool, or taking the waters in the spa....
I still, 4 plus years later, visit that spa, and always with a smile in my heart. This last time, I told my story to a gal, turned out she was the head of the whole place. She was so taken by my story, and said she would remember it always. Added bonus...she had added a service to my spa day, for free!
Hugs, Kathi0 -
Tiredkimby said:Tired
Theresa,
I understand. I've been on chemo since 8/07 with breaks for surgeries or toxicity. Tired follows me and builds up in my system it seems. Irinitecon kicked my butt! As a fellow stage IV'er, I have tried to balance quanity vs quality. I am always chasing NED and that makes it difficult for me to even report the full side effects I'm experiencing because I'm afraid they will reduce dosages or pull me off somthing all together. I already don't have a good track record with chemo working and there isn't much left, so I really hesitate.
If I spend a day doing "normal" things, it takes at least the next day of laying around to feel better. I just had an extra 1 1/2 weeks off chemo (gave me a total of 2 1/2 wks off) which helped. This weekend I went on a college visitation with my youngest (I managed to walk the whole way with a couple breaks - yeah!) and then had the family here on Sunday. I spent Monday and Tuesday in my pj's resting. Doctor appts have the same effect. I worked the first year of treatments so this is a tremendous change. I'm not the same person as bc (before canzer) in many ways. My energy level is only one of them. *I* really have changed, too.
Do you think it's time to re-evaluate your chemo cocktail? Maybe a reduction in dosage, getting it less often, or a change of meds? If there isn't a marked improvement, is it worth it at the current levels? Or, maybe your doctor can give some premeds that would help. Weight gain: are you on any steroids? I gained 20# on folfox because of the decadron I was on.
It also sounds like you might be fighting either depression (medical term and I can't diagnose you cuz I ain't no doctor and can't be diagnosed over the internet anyway) or maybe just 'the blues'. Depression you should talk to your doctor about. The blues, I'll try to address - we all get that sometimes. You probably already know my only rule - I have fun every.single.day. No exceptions. I make fun of everything I can. I watch comedy central, read funny books, watch youtube, call friends that cheer me, listen to good music....something. I have a file in my email of every funny comic I've ever received and have a file of old jokes and stuff from my office days. Some days I feel like laying in my haze, but I force myself to do something that makes me laugh. (alright, when I'm feeling really sick, a smile is all I can muster) It helps with energy. That doesn't mean I run to the mall, but it makes life enjoyable. I don't just want to be alive, I want to LIVE. That is not the same thing I thought of 2 years ago, but enjoying each day is enough for now.
I also have a gratitude journal. I journal and even have started to blog on this site a little, but my gratitude journal is different. I started it many years ago. Before bed every night I write at least 5 things that I'm grateful for that day. It is hard somedays, but you will find yourself looking for things all day long to write that night. Sometimes I'm grateful for silly things, sometimes big things. I have trouble limiting myself to 5 most days!
What does all of that have to do with being tired? I dunno, but I know it DOES! The mind, body, spirit connection is very real. I don't know if this answers anything for you but I hope it makes you feel less alone. You are NOT alone. We are here.
Take care, dear friend,
Kimby
Kimby,
Thanks for your response to my tiredness concerns. Your grateful journal sounds like just what I need, I will start one tonight. I don't post hardly ever, but I stop by to check on everyone almost daily. I have thought for a long time our scenerios seem pretty similar. I may have a little depression but it has more to do with how I'm feeling, like today just a little achey and joint stiffness, it's still cold and rainy here in West by God Virginia. Maybe when spring really springs things will look better to me. I just never thought this would be my lifestyle, ok now I am complaining. Thank you for all your words of wisdom!!! Theresa0 -
The Tiredstlsart said:Tired
Kimby,
Thanks for your response to my tiredness concerns. Your grateful journal sounds like just what I need, I will start one tonight. I don't post hardly ever, but I stop by to check on everyone almost daily. I have thought for a long time our scenerios seem pretty similar. I may have a little depression but it has more to do with how I'm feeling, like today just a little achey and joint stiffness, it's still cold and rainy here in West by God Virginia. Maybe when spring really springs things will look better to me. I just never thought this would be my lifestyle, ok now I am complaining. Thank you for all your words of wisdom!!! Theresa
Hey Theresa,
I was just talking to my neighbour this morning and asked her (she does not have cancer)... "Do you ever have days where, after feeding the animals, you just crawl back into bed and have a day of napping or reading a book, but pretty much laze around in bed all day??" She had to think about it but said, "No, not all day. I have had days where I will lie on top of the bed in the afternoon and have a nap, but not the whole day."
So maybe this is just a thing for us cancer folk. I can't remember, pre-cancer if I ever had that desire. I am known for always being on the go... even when I don't have plans, something inevitably will pop up and I'm out and about again. This same neighbour I talked to this morning told me that she has never met anyone who is more on the go as I am... even with the cancer.
So, I know I have a pretty "active" lifestyle, but there are days when I sometimes wish I didn't have commitments so that I could just crawl into bed and veg out for the day. And that is me who is NOT on chemo at the moment... as a matter of fact, my last chemo treatment was the end of Oct 2007... almost 18 months ago!
I remember being tired on some days while on chemo, but I still kept fairly active. I wasn't stupid about it... everyone knew that if I got tired then sleeping came as a first priority. But I don't recall being tired all the time, so did keep up with my theatre commitments.
I really don't have an answer for you. I think it's back to what we all know is that everyone reacts differently to chemo (or any treatment). But I definitely can relate when you say it's still cold and rainy in the West. We've been getting a lot of the usual April showers (read: rain) up here and I find that I ache more and my joint stiffness is much worse... that on those beautiful days when the sun is out and it really feels like Spring around here!
Hang in there... obviously the chemo is keeping things under control if it's not outright getting rid of it. But you might want to talk to your onc and let him/her know of the chronic fatigue that you are going through and see if he/she can suggest some changes that might help.
Hugggggs,
Cheryl0 -
I understand
Hi Theresa,
I've been at thing pretty much non-stop with assorted chemo/operations since Feb 04. The breaks I've had were pre-surgery breaks. Some days are easier than others, I try to force myself to get out most days (I do work full-time) but I take a day or two for chemo every other week. Some days though I stay in PJ's and sleep off and on. When I was first diagnosed, I kayaked 81 consecutive days waking at 5-5:30 am every day and getting out up until 2 days before surgery. As time went on, my kayaking slowed down but I do a lot odf swimming in the summer. I did also change my meds for depression because I was stuck in a funk. I know too about the NED thing, I haven't met him yet. I did have a visit once or twice from ED but no NED. Try to hang in there and do the things you like. There also have been many days were I did not want to get outside but once I did I felt 100% better.
I'm tired of being sick, and sick of being tired...
I roll with the punches, I think if I ever get an extended break, maybe I'll get a lot more energy.
-phil0 -
Tired longer nowKathiM said:Mine was a trip to the Spa in Palm Springs....
I can't agree more with Julie.
I was a stage III rectal cancer, with 9 bowel obstructions (one required ANOTHER hospitalization with 3 inches of small bowel removed...sigh...), and then a second diagnosis of cancer, stage II breast cancer, 6 months later...
I used the word 'weary'.
I set my mind on going to a spa in Palm Springs that I had visited before. So, I had good memories, and good visuals. After treatment....my final was rads for the breast cancer, 2 years after my first diagnosis...I went to the spa, for 3 days of glory, by myself. It helped get me thru many, many tough moments to be able to close my eyes, and imagine I was lounging by the pool, or taking the waters in the spa....
I still, 4 plus years later, visit that spa, and always with a smile in my heart. This last time, I told my story to a gal, turned out she was the head of the whole place. She was so taken by my story, and said she would remember it always. Added bonus...she had added a service to my spa day, for free!
Hugs, Kathi
I've only been doing the chemo gig since December, but I can honestly say that I am exhausted most of the time. I can remember being so tired before my DX that I could fall asleep at any time, but this is a different tired. After the surgery it was recooperating tired. The beginning of chemo I remember feeling tired, but not exhausted. Now, I get up in the morning and it takes me a little longer to get in the groove, I feel good for a few hours at work, but by the time I come home it's all I can do to clean up the kitchen from the night before!
I have to admit tho, that during the treatments I usually feel pretty good the first night (due to steroids and vicodin for leg pain), but it's hard to do any cleaning with the pack attached! I just can't wait until it's over, I want to feel better, especially since summer is nearly here!0 -
I hear you
Hi Theresa,
First off, having grown up in Pittsburgh, I know that those winters seemed awfully grey, and spring was slow in arriving! My daffodils are now in full bloom here in Massachusetts; but it was a long winter, too.
I am a stage 3 survivor; had 5 FU and leucovorin only nearly 5 years ago. My onc described it as "chemo lite", and, after 2 months, I got another oncologist. I was SO fatigued from the chemo, I would weep just thinking about how tired I was. I had no symptoms before my diagnosis, and was working full time, going to the gym, trying to keep up with my 2 high schoolers. I could lay on my bed and watch the ceiling for an entire morning, then roll over for a nap! One of my nurses advised that I just forgive myself for not living up to my own unrealistic expectations, and respect the TLC that my body obviously needed at the time. I went on medical leave, and did just that.
I set little goals for myself...sit outside with the dog; enjoy the breeze; do 1 load of laundry. I gave myself permission to nap whenever I felt I needed it...lie on bed and give in to it kind of nap. I love the idea of a gratitude journal; it is so hard to feel good about anything with that kind of bone tiredness!
I hope you find some strength and ideas for managing; it's a long and tiring road, but there are many good folks on that road, too.
Wishing you all the best,
Judy0 -
Yes, I can relate
Hi Theresa,
I can definitely realte to the lack of energy, always feeling tired, and also to the weight gain. Your body just doesn't get a chance to recoup, so it's natural to feel as you do. 3-5 weeks is a bit of a nice break, but not enough to get the chemo out of your system, so you never feel recuperated. Obviously, if you still have active cancer in your system, you don't want the chemo to get totally out of your system, but I can certainly understand how you feel about it! The weight gain is probably a combo of both the steroids you receive right before chemo each time and also the lack of activity you're experiencing.
I guess adjusting to your new normal not only physically, but mentally, emotionally, and spiritually is the key to dealing with it all now. Finding purpose in your current existence is also important. So you can't be like you were before, but what can you do well now? I know firsthand how hard it is to feel like a blob that needs to sleep all the time! It's hard sometimes to explain to others and expect them to understand, isn't it, how we wake up feeling tired?!
You are still important and you still have a role in your kids' and grandkids' lives!
Maybe you can do some writing- whether a journal for yourself or your family members' sake- but something. Don't be so hard on yourself! And yes, even if it's just 5 minutes, putting those tennies on and getting on the treadmill is still a good thing. 5 minutes of exercise is more than nothing & it's good to get your breathing rate up and get that heart going.
Sometimes the breathing rate needs to get up just to make us feel more alert!
I'll be praying for you- that you will receive a new inspiration of having purpose in your life and will have the desire and stamina to do more- that you can experience a few days here and there of "normalcy".
Blessings to you-
Lisa0 -
Sleepylisa42 said:Yes, I can relate
Hi Theresa,
I can definitely realte to the lack of energy, always feeling tired, and also to the weight gain. Your body just doesn't get a chance to recoup, so it's natural to feel as you do. 3-5 weeks is a bit of a nice break, but not enough to get the chemo out of your system, so you never feel recuperated. Obviously, if you still have active cancer in your system, you don't want the chemo to get totally out of your system, but I can certainly understand how you feel about it! The weight gain is probably a combo of both the steroids you receive right before chemo each time and also the lack of activity you're experiencing.
I guess adjusting to your new normal not only physically, but mentally, emotionally, and spiritually is the key to dealing with it all now. Finding purpose in your current existence is also important. So you can't be like you were before, but what can you do well now? I know firsthand how hard it is to feel like a blob that needs to sleep all the time! It's hard sometimes to explain to others and expect them to understand, isn't it, how we wake up feeling tired?!
You are still important and you still have a role in your kids' and grandkids' lives!
Maybe you can do some writing- whether a journal for yourself or your family members' sake- but something. Don't be so hard on yourself! And yes, even if it's just 5 minutes, putting those tennies on and getting on the treadmill is still a good thing. 5 minutes of exercise is more than nothing & it's good to get your breathing rate up and get that heart going.
Sometimes the breathing rate needs to get up just to make us feel more alert!
I'll be praying for you- that you will receive a new inspiration of having purpose in your life and will have the desire and stamina to do more- that you can experience a few days here and there of "normalcy".
Blessings to you-
Lisa
I find that I get very sleepy twice a day now. If I eat lunch and supper at those times, I snap out of it. Maybe our blood sugar drops, too??? I've always been a nap taker, generally each afternoon, and a good sleeper at night.
I don't consider myself to be 'tired' at these times, but I really feel like if I closed my eyes, I'd sleep for hours. To me, tired is an overall exhaustion where feeling sleepy is more of a 'just need to shut my eyes and rest.... ' which turns into a long nap.
Just today, I decided to take that nap. I had just dozed off when one of our sons stopped by to return a bunch of Daddy's tools he had borrowed.
Of course, I've only had 4 treatments so far!0
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