I’m Tired of…

Being Tired.

That sentence tells it like it is and is so true for me.  Admittedly, that’s why I have not posted lately. I just haven’t had the energy.  But to be completely honest, I find it difficult to post when I am feeling blah.  I promised myself that I’d not only post happy news, but I am surprised at how hard it is to write about uninspiring stuff.  Have you ever noticed that most pictures of survivors are those depicting victory?  I was looking at a recent commercial recently and it was about an upcoming walk.  All the survivors looked so full of energy.  One time I heard a doctor talk on Good Morning America.  She was asked why some cancers were not more active and better represented.  Her reply was so incredible.  She clearly stated that many survivors are just too sick to do it.  Bet that didn’t inspire anyone.

So, let’s talk about being tired a little.  The causes are much more “day-to-day” than others sometimes realize.  You start with limited energy.  I have worked really hard to only use my energy doing what I want to do with those I want to do it with, so it’s not really an issue of prioritizing my time.   Survivors often have to use it doing chemo, tests, and medical appointments.  For example, I have 3 next week and that’s a good week.  Another issue is that  if you are in treatment long-term, the drug just beats your immune system down and that causes other medical problems.  That’s been my case.  I have seen a lot of specialists due to issues that seem to have no resolution.  My latest diagnosis is mast cell disease.   So more tests.  I have added on 5 more medicines and they are causing me to be even more tired.  These are just examples of why the issue of being tired seems to be pretty chronic for many survivors.

The impact of being tired way too much can be really depressing.  Naturally, we don’t necessarily look tired or act tired around others.  It’s very unlike when you’ve lost your hair or have other signs that you are struggling.  Of course, it’s hard to get things accomplished, hard to find time to be with those you love (and I have so many),  and hard to be part of a family where others are productive.  For me, I limit my travels and I find it very hard feeling as if I am wasting valuable time not living the life I have been blessed with.

I have been thinking so much about this and hear others that are dealing with cancer and other illnesses talk about it, so I decided it warranted a post.  What are your thoughts on the issue?

Patsy

27 Comments

  1. Gwen

    Patsy…I’m with you. I HATE being tired. In fact, it makes me mad when I can’t do the things I like to do. Depending on what it is, I’m sometimes okay with not having the energy to do things that I NEED to do. :) Plus, I used to rally back fairly quickly after chemo. Either it’s wearing on me or, I’m just getting old to boot. Either way, it kinda sucks. Can I say sucks on here? I’ve had to get creative with my to-do lists, as well. I have to make sure the “today” things are at the top and in order so I’m not driving all over town. This is difficult since I only have two functioning brain cells that don’t always work well together. :/ If I don’t manage to get to the items at the bottom of the list, I’ve learned to live with that. So…on those days when my ole body says to me, “Sit your umm hmm down!” I just do it. I am thankful that now I don’t have to deal with a job. I miss it, but it was just too hard to manage.

    So! Here’s to US! Let’s celebrate being able to stand up the whole time while applying makeup. To us! Who give ourselves a high five for walking up a flight of stairs without stopping. To us!! Who keep on going and doing even when we’re just too tired.
    Love you Patsy!!!!

    • Honorah

      I can absolutely relate to your comment about standing up to apply makeup since I could NOT do that for months. I couldn’t stand up to blow dry my hair or get dressed. I was also falling asleep at traffic lights and once hit the car ahead of me at a red light. As we all know, fatigue is multifaceted and cancer and many of the medications cause this but I kept searching beyond that reason. I went to an Integrative Oncologist and he listened very carefully to my history of being in bed for 10-11 hours a night and feeling dog tired anyway. He insisted that I have a Sleep Study done despite the fact that I do not snore or have an apnea problem that my husband would attest to. In fact I DID have a mild sleep apnea problem with my Oxygen saturation going down to the 70’s at night and they are 100% when checked at each doctor visit. During the worst of this period, for no reason, my hair started falling out. I had a receding hairline and balding in the back of my head. Everything cleared up once I was on a CPAP machine using nasal pillows instead of a mask. Within 2 months, all of my hair grew back and I went off of a medication that they were giving me for fatigue. I feel like a new person. The only bad thing that happened is that my pain problem became more severe. The fatigue medication, Straterra, and the action that it has on the brain, was managing some of the arthralgia and generalized pain that I had – not completely, but I am requiring more pain medication as this point. Anyway, I thought this was worth passing along to everyone.

      • Gwen

        Hi Honorah,
        Beautiful name. I’ve read several novels, by the same author, who a regular character is Honorah.
        Thanks for the input. It’s definitely worth looking into. I have MS as well, and have medication for fatigue. Before that was prescribed, I was having trouble staying awake during my commute to work and back. It’s scary when tail lights start to look as if they are meshing into one. I’m not working now, which helps a lot. I am able to rest when I need to, and I’m getting very creative with my to-do lists. I’m also trying to exercise more. It’s a beautiful Sunday. Enjoy!

  2. Mary Brown

    Well said, my friend! Fatigue is definitely a problem for me, so annoying!

  3. You nailed it Patsy. I always think others are doing more than I am and others think the same of me. I hate the fatigue but it is part of the “new normal”.

  4. monica

    Well said , tried all the time.

  5. Diane

    Patsy, you definitely speak for many of us. Even three years after treatment, I still want and need to take a nap each day. What I get done, gets done in the morning. By afternoon, I’m ready to rest. I’ve learned to live with my limitations, but they still annoy me and make me sad. Diane

  6. C.F.

    Yes.

  7. Teresa

    Fatigue is what I hated most regarding chemo. Now that chemo is over (just barely), I am hoping to regain at least some strength. I think I have to check in with myself each day to see what my current energy level is. Naps — I love them!

  8. I could write a book on being exhausted…UGH. I am 3 years out of treatment and just NOW starting to have some energy. Three years is a long time to be tired but it is what it is…I think sometimes the world thinks that is an excuse…how can a body possibly be tired for so long? I’m not sure but that’s how it’s been for me!

  9. Kati

    Tired tired tired. Too tired to walk, play, eat, sleep, talk, (well maybe not…) ride my horses do anything. I look ok apart from the belly and hangdog look, but it’s an effort to turn around in the passenger seat to see my wee buddy 19/12 in the back seat. I drip with sweat at the slightest excretion. Thank you.

  10. Deb

    Fatigue, both brain and body. I willed myself to work through my last chemo treatment cycles (I teach 5th and 6th grade learning disabled students), but during my planning period or between classes, I would just lay on the floor underneath my desk and ask my co-teacher to make sure I got up. Even lifting my eyebrows took effort some days. Don’t know if I can work through if I have to go in treatment again. Bless us every one!

  11. Kaye

    Six years past treatment, I realize that tired is just part of my new normal. I’m better than I was even 18 months ago, but I have nowhere near the energy that I did before treatment. I think that’s what bothers me the most…I find that I never use the phrase “since cancer”…it’s always “since chemo”. I find that very hard to live with.

  12. Willamina Sugg

    I found out there is a difference between being tired and fatigue. Being tired, you can take a nap and get up feeling refreshed. Feeling fatigued can not be helped with a nap. It doesn’t improve.

  13. Ruth Davis

    I am sick and tired of being tired. I eat healthy meals, walk most days and take my iron and vitamins — I think these help but I vary from totally pooped all day (after chemo) to ready for bed at 7:30 by a few days before the next treatment. But — I am still alive after 4 1/2 years! Can’t complain — but I still am tired of being tired.

  14. Becky A

    I agree with all of you…..I am tired too. I am 14 months post treatment (2nd recurrence since dx 2007). I’m tired and feel guilty when I can’t work hard every day. People ask me why ” I didn’t do this or why haven’t I done that”….I want to say because “I’m fu*#+ing tired. (Sorry).
    I don’t have all my energy back, I’ve lost muscle mass and gained fat, my belly is flabby-er, and I feel tired. Lol…..dang Patsy you got me started. Miss ya.

  15. maureen Taylor

    I could not agree more, I have been having gemzar and cisplatin since february, I have chemo Tuesday steriods keep me going for 2 days then Fatigue and nausea set in for next 4 days..trying to define fatigue is so hard..I just have to give in and lie down the nausea I can take a pill for….after the four days its chemo again…I have had ovca for 3 years hoping for my 3rd remission would be nice if it lasted longer than 2 mnts

    • Gwen

      Hi Maureen…one day I was talking to an older gentleman whose wife had passed several years ago due to cancer. I’m afraid I don’t remember what kind of cancer she had, I suppose that doesn’t matter. He was told in a caregiver support group that to adequately describe the fatigue of a chemo patient, you think about a day that you couldn’t imagine being any more tired. Multiply that by 10, and you MIGHT have a concept of what we experience. My problem is I get really frustrated when I want to go out and enjoy retirement (disability retirement) and my mind and body are not in agreement.
      I feel so bad when I read about patients who are experiencing nausea. I don’t dodge it completely, but it’s very minimal. I never had it while on infused chemo, but I’m on VP16, a pill, and it’s fairly minimal. I am very thankful for that. But…maybe something needs to be added to your “cocktail” to avoid the nausea.
      I, too, am a three year fighter. I went into remission for less than a year. I’ve not been in treatment for almost two years for the same recurrence. We just had a hard time finding the right “cocktail” (I like that term LOL). I’ve had more results from this drug, and I’m praying that in December, I have a clean CT. However, I do not want a break between chemo and maintenance. I delayed my treatment for a week so I would be on my A game when my granddaughter was born. My CA125 went up 16 pts. That’s not so bad, but it makes me think I should not take breaks.
      I didn’t mean to write a novel. I only meant to comment on the fatigue issue, but I got carried away.
      Praying you’ll feel better soon.

  16. Alicia

    Patsy you know just how to get a conversation started. This really brought some interesting thoughts to my mind. My mom, and 3 of my sisters have chronic illness. I a cancer warrior! We had a wonderful, use this term loosely, discussion about fatigue and being tired. It is horrible when you wake up in the morning and your are just as tired as you were when you go to bed at night. (my thought what happens in the middle of the night, is that being too paranoid) Yes, saving energy for the important things is the main priority. Thanks for the post!

  17. As long as I can get 18 holes of golf in once or twice a week I’m happy. I typically sleep for two hours after I get home. Fatigue is much better on afinitor vs. sutent.

    http://www.caringbridge/visit/jplantin

  18. June Ellis

    I agree with all of the comments above, cancer is exhausting! I also try to do everything in the morning, but sometime leaving the house is impossible between bathroom visits and feeling tired. I went to the mall yesterday morning, was in one store and felt like I had been shopping all day – not me at all! Went home depressed, but then again I am alive and thankful for all my family and friends, Interested to hear if anyone who reads this had radiation and is suffering from rectal burning, any cure?
    June

  19. Marilyn J. Sutterlin

    Patsy: You are so dear-to-me, especially during “Teal Month”! Thank you for your latest post on F-A-T-I-G-U-E! It really becomes “the elephant in the body” that no one wants to deal with…I never come up my 13 basement stairs, from the washing machine, that I do not recall Winter of 2009, when those 13 steps were as high as Mount Mitchell, and the chair in the den was my only goal…It was grinding and frustrating, and unrewarding–when shower-taking was the MAJOR energy allowance for-the-day! Depression, I’ll say! (One has to even bridle one’s “to do” list for the hour, because the body JUST WILL NOT DO IT!)
    So know that you are telling it like it is, it is real…and I pray for “it” (the flat-out empty
    gas tank-of-life ) to get re-filled and LEAVE YOU FULL of spice and vinegar!!

    YOU are loved! Lyn Sutterlin

  20. liebling

    Patsy,
    You are so mcorrect. I am 6 weeks out and I cannot get over the fatigue. My mind most days is going in 20 different directions ans I a not sure what to do. I cannot concentrate and I loved reading, but now it is too much of an effort. My iPad has all the latest books downloaded, but I cannot find the energy,. I am so frustrated Nd my family does not understand that. They feel I should just take my meds and rest. Imam going crazy, tv does not appeal to me, moves I cannot concentrate on,so I go into my grade n and sit among all my beautiful plants and talk to my dogs….Scary hu. And on top of all of that my employer called to find out n when my release date to come back to,work is. Now I am really depressed, since all during chemo I did not lose one strand of hair. Here I am finished for the time being and ll my hair falls out. How weird is that?
    Anyway, I am with you patsy, good bless and thanks

  21. Shannon

    sending each of you love and a quiet moment of relaxation!

  22. Haven’t seen a word on here about “after radiation.” I am 67, 4 years out from combo (radiation/chemo for stage 3 N-1 anal cancer). Fatigue, pain, all these appointments, depression, incontinence….. oncologist says “Learn to cope, long term effects of treatment NOT going to go away. Price you way for having cancer…. at least your breathing.” WTF? And he has a rep for being “compassionate.” Lost hair during chemo and again during the past year. I hate the new normal.

  23. Not sure if this is the right forum, but my elderly Mom is going through chemo now for OVCA stage 3c after extensive surgery at MD Anderson. I’m doing everything I can.. .she lives in another state and I fly back and forth like she’s down the block… have nurses, sitters, other relatives with her at all times. I can’t move there and have offered for her to come live with me till chemo is over but she refuses. So the problem: She constantly complains about how bored she is… she’s been very active and independent until all this doing all her own yard work, babysitting great grandchildren etc. She’s surrounded by people all the time… lots of multi generational family coming and going which she loves. I bought her a laptop to use in bed because she had spent a lot of time on genealogy and facebook etc online, before. My daughter, who has more disposable income than I, has hired a personal “concierge” for her so that anything she desires appears quickly. WE bring her cross word puzzles, any food she wants that can be reached within an hour, any movie .. book… etc.. .you get the idea. She has everything she could ask for yet she still is complaining about being lonely and bored. She’s almost like a child… it’s so stressful for me that I have developed something like colitis and can’t eat – losing weight almost as fast as she is. Any help would be so appreciated. Thank you.

    • First off: I guess I understand why you wouldn’t want to post anything that isn’t “happy” but life isn’t always happy and trying to deny the crappy part can lead to depression: I believe. There are so many of us out here for support…. But we can’t respond unless you let us know….
      Sounds to me like Mom is going through some depression too. And maybe she is just plain scared. God knows: Cancer is one of the scariest words we can ever hear. When I found out I had cancer I tried to run away and I was on the procedure table getting an anal ultrasound! (Not how you want to find out you have a life threatening illness BTW!) We, patient and family alike cannot run away from this thing. It is hard on all of us. Mom says she’s bored…. Scared and depressed might be a more realistic discription.
      I didn’t really understand the depressed part myself. And I couldn’t express the scared part either especially since my medical team kept telling me “we can heal you.” And family and friends kept hammering at me about the importance of having a “positive attitude”. Lots of people wanted to visit, pray over me, support me etc.. I had a close friend get the word out that I didn’t want visitors. Who wants people around in a small apartment when you’re having bathroom issues and sick to your stomach? I got through it. But I am one of those people who prefer to be alone when I’m sick…. So don’t judge your Mom by me.
      I don’t wonder your tired. I am 4 years in remission and I am exhausted. All the time. I eat and go to sleep. I hurt. I can only do so much and I have to go rest. I thought survivorship meant you were all better. Then I had a heart attack. So: I don’t look at myself as a survivor any more. More like a wounded warrior. Learning to pick my battles…..

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