A while ago, I finally figured out that I need to nap almost daily. I discovered that if I napped 1 1/2 - 2 hours a day, I had enough energy in the evenings to parent the way I want (to help my kids, be patient with their problems, read/sing to them at night, etc.)
I was feeling good.
A week or two after my discovery, my oncologist casually mentioned that I should not be feeling tired from this kind of chemo.
Never mind that I spoke with other women who also felt tired from "this kind of chemo." Never mind that one woman told me that she could barely function while on "this kind of chemo."
As soon as I heard my doctor say that I should not be feeling tired, I felt that I must be indulging myself.
At first, I just cut out a nap here and there, because there were other things that really needed to be done.
But there are always other things that need to get done. So, every day, I pushed a little bit more, and a little bit more, until taking an afternoon nap really did seem like a luxury.
Recently, I have really been feeling like I am pushing myself beyond my limits. Even though I am acutely aware of all the things I no longer do, I still want to do as much as I can.
But I am crashing. On Monday, I cancelled my morning appointment, so I could sleep a few more hours. On Wednesday, I stopped what I was doing mid-morning and went to sleep... for almost four hours! (I had to really push myself to get out of bed and drive to the Mifletzet) On Thursday, I slept two hours in the afternoon and still went to bed at 10:00 pm (which is really early for me).
I have never been good at limiting my activities. As soon as I am rested enough, I try to return to my "normal" schedule. Then, I discover that I am doing too much, so I cut down my activities. Then I feel rested enough, and.... the cycle repeats itself.
I am not sorry that I am pushing myself. It is summer vacation, and I really want to do fun things with my kids. But it is hard!
Eventually, I will find the balance....
Maybe in September, when school starts....
Please daven (or send happy, healing thoughts) for RivkA bat Teirtzel.
With love and optimism,
RivkA
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17 comments:
Sleep and rest are very important for all of us. It's during sleep that our bodies and minds repair themselves. I think you should listen to your body if it's telling you that you need a couple of hours sleep in the afternoons. Everyone reacts differently to medications and your oncologist saying you "should not be feeling tired from this kind of chemo" I'm sure doesn't mean there might not be exceptions (as the other women you spoke to prove there is.)Rather than look at naps as a luxury or "indulgence" or wasted time, I feel we should think of them as something positive we can do that helps the body repair and recharge itself.
I'm all for balance...
I hope you get some strength back. Feel good.
Love,
ALN
your descritpion of how you feel with/without REGULAR napping etc reminds me of what you were saying about pain meds and "chasing the pain". get out of the pushing-till you're-so-tired-you-need-to-stop-what-you're-doing-and-sleep-four-hours cycle and go back to what you admitted worked.
i have for a long while now, needed regular afternoon naps (20min-2hrs depending) to get through the day, and i do not get chemo, have chronic pain (other than the usual parenting kind;-), or need to constantly cope with the emotional and physical toll of having cancer.
so, my very dear type-triple-with-a-capital-A friend, stop BRAGGING, and do what you already kow you should, no need to feel guilty. as you said, it allows you to be the parent/wife/person you want to be, and presumably it's at least partly because of those roles that you've been forgoing those naps and missing out consequently. kind of self-defeating.
your loving type b friend
BW
ps- if i sound cranky i apologise, just getting over some strept and not feeling very energetic etc...
I think summer vacation keeps EVERYONE with kids off balance. Schedules don't match up. This kid is there, that one is here. Some of us also work outside the home and just when you really WANT to take time off - all the kids are synchronized - that's when that Really Big project pops up.
When your kids were babies, you heard "sleep when the baby sleeps". Did you do that? I didn't. But I think, now, you have to schedule in sleep. It's a change in rhythm but you'll adapt if you accept it. After all, we're changing rhythm all the time!
Hugs
Yehudit -- I like the idea of "recharging." It's all in the packaging...
ALN -- If you ever find that balance, you might have to change your blog name!
BW -- I never thought about treating being tired the same way as treating pain (i.e. trying to take care of the problem, *before* it becomes incapacitating)
I did not understand what you thought I was "bragging" about. (Never thought of myself as much of a bragger, except maybe when it comes to talking about my kids...)
RSI -- I know! It's just challenging when "scientific studies" don't confirm our experiences (...yet).
y'he sh'mey -- It took me a while to learn to "sleep when the baby sleeps", but I got there eventually. I guess that means there is hope for me yet!
Trial post
The trial thing was me trying to figure out how to post.
RivkA - I do not have health issues, eat well (it really doesn't take so much time) excersize regularly and STILL feel like I need to take a nap in the afternoon if I want to function. I almost never see the clock strike 10:30. I agree with teh person who said that summer is particulary tiring. Also, it might be our age. I noticed that my energy has been down since turning 40. My point being, it really is OK to be so tired. My god, just being in the hospital is exhausting - even without the chemo. My baby had a medical issue that had me in the hospital once a week for a few weeks. Those few hours totally wiped me out for several days. I literally could not go to work the next day and had to stay home and recuperate.
You also spoke ealier about the mitzvah of letting others help you. Well, that works for your kids. If they let you rest and understand that you can't play you are giving them the opportunity (and teaching them) to be compasionate people.
Darling friendm, be nice to yourself and sleep in the afternoon!
Love you,
Ariela
So I will write again -
As much as I appreciate your onc (and you know I really do), he is a doc and relates to scientific research. However, to really know the side effects of drugs - you need to listen to yourself and other women. They are the BEST source to know what the chemo does to your body - during, after, in between. Trust yourself!!!
my amazing rivkA. i know you often feel frustrated because you feel that you have less energy and get less done than you did pre-cancer/chemo.
When you start to complain about ONLY being able to do x,y, and z instead of a-z like you used to, and still be ready for aleph-taph after dinner, i can't help but think - you get AT LEAST IF NOT MORE done than i do!
that's what i meant about "bragging". i didn't mean you were being offensive, just that you should realise that if you're no longer wonder-woman, it's only b/c you're wonderwoman-on-chemo (or as ariela might put it: wonderwoman-over-40).
love
BW
My "40 year warrantee" has expired, and now all my parts are breaking.
This slowing down thing is really tough...
Ariella -- I like the idea that I am providing my kids with the opportunity to learn to be thoughtful and considerate. (I just wish they didn't have to learn so many lessons at such a young age...)
BW -- "wonderwoman-on-chemo" and "wonderwoman-over-40" -- LOVE IT!! LOL
RivkA:
I am an older woman (in my fifties) who is being treated with the same chemo drugs as you are (I am assuming so, from the tags). I was diagnoed with stage 4 breast cancer metastasised to bones over six years ago. I have been doing this particular chemo since February, but have been on various chemo drugs non-stop for nearly three years.
Of course you feel tired - chemo of any sort seems to wring eneergy out of you, and you have so much to do, that you want to do well. My doctor tells me too that there shouldn't be many side effects with this drug other than hand and foot problems. But I am nauseous (never know when it'll hit me) and very tired. I need to sleep every afternoon. And I find it very hard to get going in the morning. At first, I used to fight it, but over the years I have learned to listen to my body. There are no prizes for suffering. If you need to sleep to deal with the rest of your day, then sleep. Doctors do not know everything, even though they sometimes want you to think they do. How many times have they told you that a drug will have x, y and z side effects, and you find you don't suffer from those problems at all. So why be surprised when you do suffer from a side effect you're not "supposed" to suffer from.
Be strong, and listen to your body as well as your doctor. I wish you strength and to feel as well as you possibly can. Every day is an extra blessing that you have lived to see your family grow and enjoy whatever you can of life.
anon -- Thank you so much for your comments. I really appreciate your input.
I am curious if you live in Israel. And also how you found my blog. (feel free to email me off the blog, if you prefer:
coffeeandchemo@gmail.com)
I wish you strength and good health.
RivkA: I found your blog on Chayyai Sara's blog roll having visited there for the first time in a couple of years. Your blog name just caught my eye!
I am, in fact, an Israeli citizen living in Canada. I spent ten years in Israel when my children were growing up, and my two boys 'returned' as soon as they left school and are both married and well settled there.
We originally left Israel because of my husband's job - he is Director of Education of the Jewish community school here in Toronto. But my condition and the excellent Canadian health system make it very difficult/impossible to move back now, much as I would like to. So I have to be satisfied with visits whenever my doctor allows me to fly, so that at least I get to see my grandchildren.
I hope you have the strength to continue to enjoy your children and your friends.
I don't know how Israeli health care compares with Canadian health care, but I must acknowledge that the system has worked well for me.
All my tests and treatments, in Israel, have been covered (so far). I am worried that a day will come that this is no longer true. For now, however, the system has been good to me.
Since my family is in the US, I am still working on finding a way to visit in between treatments. I haven't been to the US since I started chemo.
I also wish you the strength to continue to enjoy your children and your friends.
:-)
Listen to your body. If it tells you that you are tired, follow its counsel, and not that of the doctor!
Gila -- easier said than done. but, I'm trying. thanks!
All this positive reinforcement is really helpful.
Since posting, and reading all these comments, I have taken MANY more naps, and I feel a LOT better.
Thanks to you all!!!
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