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living with little energy

gailhenry
Posts: 1
Joined: Jan 2011

I was in CSN when I was in tx for hodgkins lymphoma. I am in remission for 4 years now and feel well except i am very tired still. Are you like this?

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

I have been here for almost 5 years now and admit my energy is nowhere close to what it was before cancer. I think sometimes it's just my new normal. I've been doing more walking with my dogs and am feeling a little better although at the moment it's hard to enjoy because of the winter snow.

We're working on it.

Take it easy
Beth

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Gail,
I'm fairly new to this cancer journey..dx in June 2010 and just finished chemo in Dec, and not quite in remission yet. So obviously me being tired is expected at this time. There are quite a few long term cancer survivors in our group whom I'm sure will be answering you shortly. I just popped in to say "hi".."welcome"..and to let you know your not being ignored. Weekends can get kind of quiet here, but there's a few of us always checking in daily...me for one..ha! Take care...someone will answer soon.
Sue (FNHL-2-3A-6/10)

yesyes2
Posts: 592
Joined: Jul 2009

Hi Gail,
I am almost 1 year out from treatment with RCHOP for NHL. I still battle with fatigue from my treatment, although in the last few weeks I find I do have more energy. I think this fatigue will probably be my new normal and will just have to go with it. When I have energy I'm great. On days like yesterday I pretty much laze around all day and am very thankful that I have a very understanding husband. PJs are my favs.

Oh and welcome to CSN
Leslie

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Leslie,
I have been out 3 months now and still not 100%. John(FNHL-1-4A-5/10)

deerhaven
Posts: 5
Joined: Jan 2011

Leslie,

It's nice to know that on SOME days you have energy. I'm really feeling sorry for myself today. I'm just so tired of getting winded by walking up a flight of steps.
I'm supposed to push fluids and I'm tired of drinking so much, too.

It's nice to have someone to complain to! Thanks!

Sandy

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Sandy.
Never think you are complaining. That is what this site is for. You have to get your feelings and emotions out and this is certainly the place to do it. GOD ONLY KNOWS I POURED MYSELF OUT ON HERE ENOUGH TO KNOW.So sorry you are feeling so tired today. John(FNHL-1-4A-5/10)

yesyes2
Posts: 592
Joined: Jul 2009

John,
I can't recall you ever complaining. Must be my chemo brain, lol.
Love ya,
Leslie

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Leslie,
Remember all the pi$$ing and moaning I was doing about that bus with my name on it? I could not hide from it anywhere. As far as Chemo brain I was a mess with that. I would go to the refrigerator and open it and forget what I was looking for. That was terrible. You know what else? I still do it.What do ya thunk?LOL

yesyes2
Posts: 592
Joined: Jul 2009

Hi Sandy,

During my chemo I was where your at. We have a two story house and I would have to rest on the landing between flights of stairs to get enough energy and breath to make it to bed. I found it really scary but my ONC didn't seem concerned at all. He said it was from fatigue caused by chemo, ya thunk? There have been several others on here who have spoken about not being able to climb stairs, and the most likely reason for them was low red blood counts.

This is all a part of the chemotherapy process and after treatment this extreme fatigue does go away. You are getting a very harsh chemo and this fatigue is to be expected, but it's still very difficult to deal with and accept and I'm very sorry you have to go through this. You just need to keep your eye on the prize, Remission. And we will be here for you on your journy.

Leslie

cathyp's picture
cathyp
Posts: 373
Joined: Dec 2009

I had HD in 1989 and 1994. Breast Cancer in 2008. Not to be discouraging, but loss of energy is a fairly common long term effect from treatment. It's our "new normal".

britta
Posts: 107
Joined: Apr 2010

Hi everyone,

So what is NORMAL? I'm six months out from my Zevalin and have about an hour of energy a day. After that, I'm pooped. I even get tired if I talk on the phone or have company too long, just sitting here. Is that normal? Just wondering how much energy you guys are talking about. I know Mary is working full time so I would expect she would get tired, but how about the rest of you.

Darlene

yesyes2
Posts: 592
Joined: Jul 2009

Hi Darlene,

I think energy is relative. Because I have RA even on a great energy day my stamina would not be near what other people would have. I do not work and am in my 60s so that plays a part too. But chemo whipped my behind in a way I hadn't experienced before. I just didn't want to move, no motivation to do anything. The no motivation is still my problem. There are days I pretty much don't get dressed or do much except stay in bed. I don't sleep, just watch TV, play on the computer and than nap. Other days I can go for a full day doing things but they are fewer than I wish. I'm so lucky I don't have to work or have young children to look after.

Well that's my story. Anyone else?

Leslie

britta
Posts: 107
Joined: Apr 2010

Lelie,

I so appreciated your sharing. I guess one person's normal can be totally different than anothers. I'm pretty much where you are other than I could never do a full day. My husband tries to get me out walking a little every day, once and sometimes twice around Target and I'm pooped. I'm in my sixties also, or as Sue would put it almost 70, so I guess we are probably not going to have the energy that someone younger would have.

I look at this site quite often, but don't write much as my "brain" gets so tired, and then my whole body hurts, does that make any sense?

This note is actually my second one, lost the first one when I went into look at your page, sounds like you have been through a lot. It does make one appreciate each day and as you say the beautiful sunsets and all of God's beautiful creation.

I see you were on here late last night, are you a night owl too?

Darlene

yesyes2
Posts: 592
Joined: Jul 2009

Hi Darlene,
Your so right, each of us has our own normal. I was really tired yesterday as I needed to get up early and didn't sleep well the night before. Last night I slept for 12 hours. I havn't done that in years. But guess I needed it. Feel a little better today. Actually your husband is right, exercise will decrease fatigue and get the good chemicals running. I need to go take my own advise.
Yes usually I am a night owl and lymphoma really messed with that. But I am on the west coast so 3 hours earlier than you.
Leslie

scuttlebug
Posts: 59
Joined: Mar 2011

leslie i have been remmission for two years and i am still fatigued it takes me two or three hours to start moving around and i mostly stay in pajamas to i have started going back to church i know if i have enough faith god will strenthen me.wishes for good health .denise

yesyes2
Posts: 592
Joined: Jul 2009

Hi Denise,

My fatigue is still BAD.....after one year off of RCHOP. Some days like today are good and I've done far too much today. And some days, like yeaterday, I never really got out of my PJs or bed, LOL. So glad I have an understanding husband. And my favorite clothes are PJs.

Blessings,
Leslie

Michele23
Posts: 168
Joined: Mar 2011

Did Chop in 96 with only about a 2an a half yr break till Rituxan.I feel if anyone can carry on like before treatment God bless you.I myself have come to terms with it,knowing what once was will never be again.It takes such planning getting things done these days.Have a good all,Michele

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

I'm about 6 months our from my last round of R-CHOP and continue to be fatigued as well. Five hours after getting up, I need a 2 to 3 hour nap. I am unable to return to work due to this fatigue. My oncologist said that some people take longer to come back from R-CHOP than others. I tolerated the chemo so well, I had no idea that I would feel so poorly when I finally got into remission! I try to listen to my body, eating when I'm hungry and sleeping when I'm tired. Are either of you working? I'd appreciate any tips you may have. At home I'm able to group chores the way I need to, it would be very difficult for me to do that in my work environment. I feel like there's a very high energy woman now trapped inside a sloth's body and it's very frustrating. Kellie

Michele23
Posts: 168
Joined: Mar 2011

Well Kellie you have hit the nail on the head.We are very trapped.Yes,I clean part time but not now.Sometimes at a snails pace.Have always worked hard and pushed my body to the max.Now it's like my get up and go got up and left without me.Seems my focus is way off too.My house was always spotless very hard seeing the new me.Usually in the spring I'd tear the whole house apart cleaning washing curtains carpets etc.Really don't know how this will work on treatment.Love working in the yard but every time I do things in the sun I'm so dizzy I've almost fainted at times.The worse part is the sun makes my body aches feel better.All we can do is try as best we can since sitting around makes me crazy.Little bit here little bit there, not like before when we could move a mountain in a day.LOL Do try and find something to stay occupied as the mind tends to slip too.I started visiting an elderly neighbor.Sometimes that's like the blind leading the blind.Stay well,Michele

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