Well, I'm Tired... Again

By Katie R

2 min read

I want to write but I don’t really have the words. I’m tired. Work has gone quiet because of it. Not that I’m worried. Well, a little bit worried. But I’ve just paid this month's rent so that’s good that I managed to do that. And it wasn’t as hard to do as it has been in the past. So that’s good.

When others notice your fatigue

Today, a client asked me if I’m ok because I look tired. Last week, one of my co-working friends asked me if I’m ok because I seemed so tired. So, I suppose in a way it’s nice to know that others are clocking that I’m tired. It’s not just in my head.

It’s interesting...because I’ve been better for so long, my co-working space friend has forgotten that I used to be like this all the time. This was my norm rather than the rarity. I hope that this isn’t my new norm again.

I’ve had shooting pains down my skull again. This isn’t a good sign. It shows how exhausted I am.

So much more is an effort again. I had a busy weekend, which was not quite the weekend of nothing I was hoping it to be. But it’s really taken it out of me. Even though it was 10 days ago. I still haven’t recovered. And this isn’t good.

Getting enough quality sleep with cancer

I need to sleep more. But I have enjoyed being able to do things. I know I need balance but I got so fed up with having to go to bed at 9 or 9:30 in my 30s. I think I’m going to have to start doing this more. Trying to get more sleep. It’s so frustrating.

I filled out a questionnaire for a research study on CML and it asked you to rate symptoms over the last week. I was really shocked to see on paper how bad it’s been. I’m so quick to say I’m fine and everything is ok. The reality is that it isn’t. I really don’t want to be in this place again.

I’m waiting to hear about my last leukaemic rate result. The second result on the lower dose. I hope it’s still ok. I really don’t want to increase my dose.

Dealing with my CML fatigue

I'll be back at the hospital in just over 3 weeks. In a way, it’s good that I can go to this appointment and say definitely that I’m feeling worse. But that’s also not what I want. I had really hoped that this drug was the one I could live my life on. To completely forget about the stem cell transplant option. To not have to make that decision.

This coming Monday is a bank holiday so I’m going home for the weekend. To do nothing. I need it. I haven’t had a proper break in a while. And I really hope that after 3 days of doing very little I will feel better and rested and recharged. That this has just been a blip. That it’s not just going to get worse and worse.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Blood-Cancer.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Susan Gonsalves Moderator & Contributor
<inline-mention user-id="3646379" username="Katie Ruane"/> I have CML too and I hear what you are saying. There were a couple of weeks recently where I could not even function or finish off the day so I had to take long naps. I'm trying to go to bed earlier to see if that helps. Good luck with your next test result. I find out my results in about 3 days and the suspense is killing me. Hope you feel better and can enjoy your weekend.
1. Ann Harper Moderator & Contributor
 <inline-mention username="Susan Gonsalves" user-id="3653135"/> hopefully your test results went well. Let us know how it goes. Ann (Blood-Cancer.com Team member)
mpadjen Contributor
<inline-mention user-id="3646379" username="Katie Ruane"/> , I hear you. Please take care of yourself first. I have a similar problem of doing too much on the feel good days and I usually pay for them, realizing that if I hadn’t pushed so hard, I probably could have gotten more done. It’s such a balancing act....
Ronni Gordon Contributor
Really sorry to hear you're dealing with so much fatigue. It's disappointing to get your hopes about something and then not have it turn out as expected, for sure. I hope that it's just a blip and that you feel better soon!
Ann Harper Moderator & Contributor
I'm sorry you're feeling so much fatigue. It must be so hard to want to live your life but having tiredness hinder that. When Crystal was sick and going through treatments she did what she could, but rested when she needed to. It was difficult for her too, but her body needed rest. Sometimes she over did it. I will say prayers for you that you can find a balance between your emotional and physical needs. Good luck to you.
Maria Valente Moderator
Hi Katie. On good days I feel as if I can conquer the world, then the bad days hit. They hit hard. There are times when I wish I didn't have to be this productive. CML and a full work week just don't seem go well together. I want to concentrate on my body, but so much else takes precedence. It steals the joy out of life to be pushing this hard. I hope your bloodwork goes well and that you have the opportunity to just take care of you. I'm on a low daily dose of disatinib and like you I worry about an increased dosage and all that comes with it. In the meanwhile we do what we can. Thank you for sharing your experience. Thinking of you.
Ann Harper Moderator & Contributor
<inline-mention username="Katie R" user-id="3646379"/> I know many things have changed in your life. I hope your fatigue has gotten better. Ann (Blood-Cancer.com Team Member)
Dennis Golden Moderator
<inline-mention username="Katie R" user-id="3646379"/> - Just wanted to reach out and say HI and hope you are doing well and hopefully take in some fresh air. 😀 Dennis(Blood-Cancer.com TEAM)
balonzi Member
KatieR, knowing how debilitating the fatigue is with blood cancer I stand with you in solidarity. I’m so happy that your colleagues are kind enough to check on you. Also remember, with this blog “ our family of friends we’ve never met, “we are not alone . Fatigue is my biggest problem after stem cell transplant 4 years ago and after 4 years in remission, one of the three blood cancers that I was diagnosed with ( LGL leukemia, tcell lymphoma and multiple myeloma) the multiple myeloma relapsed and I found out about it the day before I was to celebrate 4 years of remission, or my 4th birthday as we say. Notice I don’t say “ my cancer relapsed “, but THE cancer relapsed … because I refuse to own it. Listening to our body’s signals is paramount . I am currently not working, so when I’m fatigued I rest, it’s how I survive . I hope you get to spend your upcoming 3 day weekend resting and catching up on your sleep and please know that you are in my thoughts and so many others thoughts as well. Waiting on test results too, I pray we get some positive feedback. Keep us posted. 
1. Ronni Gordon Contributor
 <inline-mention username="balonzi" user-id="3638313"/> How are you doing? And how long do you have to wait for your test results? Or, since you posted a day ago, maybe you already have them? I hope they are (or were) good and if not, it sounds like you have the strength to handle whatever comes your way. Three blood cancers at once...yikes! That's enough to test anyone's strength. Regarding the relapse...I too relapsed at about four years. I couldn't believe it! Oddly, one of my emotions was anger and another was disbelief. I had plans! They were of course interrupted for treatment. I am now 14 years "out," as they say, meaning, 14 years after my last transplant. Good luck to you and looking forward to hearing your update. Ronni (Blood-cancer.com team member)
Bhambrick Member
I'm experiencing fatigue in the worst way. No energynto do anything except sleep and that's not me. I've always woke early going to work or cleaning house. Now every chore even writing is difficult. All I want to do is sleep.
1. Ronni Gordon Contributor
 <inline-mention username="Bhambrick" user-id="6708351"/> Very sorry to hear it. I think most on this site (including me) experienced fatigue. I hope you don't mind my asking: What was your diagnosis?And have you reported your fatigue to your healthcare team? I ask because, at least in my experience, there were things to be done about extreme fatigue. These could range from medical interventions such as a shot to changes in diet. I hope you feel better soon. Best wishes, Ronni (Blood-cancer.com team member)
2. Angie Netterville Moderator & Contributor
 <inline-mention username="Bhambrick" user-id="6708351"/> Our bodies speak to us in many ways. While I'm sure it's frustrating to be so tired, do you have the time to allow yourself to sleep? Our bodies <a href='https://blood-cancer.com/video/handling-fatigue' target='_blank'>https://blood-cancer.com/video/handling-fatigue</a> a lot of repairing while we sleep, so maybe your body is trying to help you heal. I know there are a lot of articles on fatigue, but here is a great video you might find helpful. Ronni's advice is wonderful too. Please let us know how you're doing. <a href='https://blood-cancer.com/video/handling-fatigue' target='_blank'>https://blood-cancer.com/video/handling-fatigue</a>
Deemaw Member
I have to force myself to engage in any activity.. I don’t have CML I have FNHL and on maintenance.. but it’s wiping my energy and immune system totally out! I have found that I must engage somewhat to have peace of mind but then come home and nap or listen to my body.. sometimes just laying down helps! Best of luck to you!
Ronni Gordon Contributor
<inline-mention username="Deemaw" user-id="4667261"/> Sounds like you are very wise! I know I should listen to my fatigue, and sometimes I do but at other times I ignore it . This gets me into bad situations such as falling and hurting myself. Your idea about just laying down is also very smart. I told a friend that I have trouble getting to bed and she said to at least get to bed with a book at 10. Like you said (sort of), you don't have to be sleeping to be resting. Here's something I wrote about listening to your fatigue. Best of luck to you! Ronni (Blood-cancer.com team member.) <a href='https://blood-cancer.com/living/aml-fatigue' target='_blank'>https://blood-cancer.com/living/aml-fatigue</a>
1. Deemaw Member
 Ronnie, yes, exactly just resting your body can restore some energy. Please take care of yourself so you are not falling and hurting yourself. I understand how you want to push yourself and live your life.. I’m right there with you, ( here comes the but) but, if your hurt you can’t do the things you want to do.. so rest when you can, take care of you! PS that was a great article! Thank you for sharing!
Shane.Lee Moderator
Wow..that's gotta be horrible. I have AML with stem cell transplant. I can't even fathom having to deal with leukemia being drawn out day after day. Kudos to you. When I was first diagnosed, I was literally the walking dead, as I had absolutely no immune system. No white blood cells or Myeloid cells that were mature. My body was flooded with immature wbc, and not near the RBC that my body needed to survive. With absolutely NO symptoms that anything was wrong. As for stem cell transplant, you mentioned you really didn't want to make that decision. Please, don't rule it out. It's not hard to receive. The hardest part of SCT is all the meds you have to take after receiving new stem cells. Anti-reject meds, meds to control the behavior of the new stem cells, and meds to suppress your immune system for a while until the new stem cells become mapped with your bodies DNA. I had my SCT June 2020, and finally now starting to come off most of those meds. But you know what? Those new stem cells is the reason I'm still alive and kicking to tell about it. I am an advocate for <a href='http://blood-cancet.com' target='_blank' rel='noopener noreferrer ugc'>blood-cancet.com</a>, and an advocate for <a href='http://bethematch.org' target='_blank' rel='noopener noreferrer ugc'>bethematch.org</a> . If you have questions about stem cell transplant, check out <a href='http://bethematch.org' target='_blank' rel='noopener noreferrer ugc'>bethematch.org</a>. Best wishes. Shane (Blood-cancer.com Moderator)

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