“Fatigue is a daily lack of energy; an unusual or excessive whole-body tiredness, not relieved by sleep.” – Chemocare.com
Wow. As I started to do a little research on this subject, so it wasn’t just all about what I think, I was struck by all the information and data about how they don’t know what the cause is. Are you kidding me?
One thing I learned is that there is a name for it. That’s good. We do that well in America, label behaviors, feelings, activities. So its called Cancer Related Fatigue (CRF). There are some other variations of that, but there you have it.
I’ve been told that there are new studies out that “prove” its all psychological. I couldn’t find them. Whatever. Doesn’t matter really. It is debilitating for the patient and their loved ones, plain and simple.
Yes there are lots of causes. Yes it is psychological too. Like lots of things in our life there are a myriad of things to look at and its overwhelming.
So the psyche part is: YOU HAVE CANCER! OMG! YOU ARE DOOMED! – Ok, yeah, that just might put you in bed under the covers for a long time. It kind of reminds me of the psychotropic drugs prescribed to help with depression. Depression causes suicide. Anti-depressants cause suicide. Patient goes on anti-depressants to handle depression and tries to kill themselves. Doc shrugs.
So yes, being told you have cancer can put you down for a while. For some of you, it will be a long while. There are many of us online blogging about the lighter side of Myeloma life hoping to help lift you up a bit. Its important to us.
There are A LOT more causes of Cancer Fatigue. So which came first the cancer or the fatigue, the fatigue or the depression, the depression or the fatigue? Some of the depression from cancer IS the fatigue, AND cancer related fatigue does cause depression! Geeze Louize, are you getting dizzy yet? We haven’t even touched on the chemotherapy!
Best Chicken and Egg joke: (depression, fatigue, fatigue, depression)
A chicken and an egg are lying in bed.
The chicken is smoking a cigarette with a satisfied smile on its face.
The egg is frowning and looking a bit pissed off.
The egg mutters to no one in particular . . .
“Well, I guess we answered THAT question !!! “
As a caregiver you often are trying to decipher what is it exactly? Is it in their mindset? Are they giving up? Is it the fact that they have zero immune system, low red blood count, need hydration, lost their muscle mass, being slammed with lord knows what in drugs? Are they scared? Or is it they are just being damn lazy! (My personal favorite.) It could be all of it (except the damn lazy one). We are desperate to get them moving and trying to keep some semblance of their physical well being, so that when its over, or if they should have some trouble along the way, they have the stamina to fight it and the stamina to get their life back. We understand as best we can that its hard. We can see it happening. But it is really hard, day after day, to watch them atrophy from head to toe, inside and out. And of course, you have the occasional patient who breezes through his treatment and doesn’t seem to mind sharing it. ARGH! (Sometimes inspiration doesn’t feel so inspirational!)
I think what is shocking for many of us, is just how long this cancer related fatigue can last after the treatment. Dave finished up 14 months ago. He is only now stating that he is feeling good enough to start exercising. It has been very hard for me and I admit, I’ve lost my temper a bit with Dave this past year and even been sarcastic. He’ll complain about being overweight and I’ll say something mean like, “Yeah, well, sittin’ on the couch ought to help that, would you like some more ice cream?” I’m not frustrated out of anger or disappointment, I’m scared. I get scared when I see that he struggles to move, tie his shoes, lift something up. My racquetball champion is no more and it is something I’m constantly having to look past and accept. I’m not accepting it forever, mind you, and I think that is where the rub is for me. I’m trying to be patient and understanding, but I’m not seeing much EFFORT on Dave’s part to do anything about it. I think things like, he’s only 51 and he moves like he is 90! As usual, we want the same thing, but we are just on different time tables.
I had discussions with other MM patients when I was in Little Rock (which I do a lot when I’m there). Low and behold, as usual, the wonderful patients there set me straight.
“The fatigue is PROFOUND!”
I heard this again and again, and one dear patient friend very gently told me to “back-off!” I love it. Thank you. I just needed to know. Its not something the docs/nurses really talk to you about ahead of time. And they don’t give you uppers to help combat it, though they sure give you pretty much everything else! And yes, they will give you anti-depressants too. But if you kill yourself, it will be because of something other than the medication – no one has won that battle in court yet.
So what are some of the things you can do. Well there are a lot of things, but you are too damn tired to do them! Anyway, here are just a couple of websites that have some more in depth information about Cancer Related Fatigue and some suggestions to help you deal with it.
Our doctor in Little Rock, when he knew that I was a complimentary/alternative therapy kind of gal, shared with me that there were studies on Ginseng for helping to combat fatigue. So we started Dave on that after the chemo was done. It didn’t do much then, but it might now. I mean the effects of those powerful drugs are pretty hard to combat with some herbs.
It is helpful to your recovery both emotionally and physically, to at least try to do something to keep your body from complete deterioration. (Although that, in and of itself, might be terribly depressing for some – Lance Armstrong comes to mind!) But its just not always possible. After Dave’s treatments and we went home, I would just try to get him out on dog walks around the park in our neighborhood. It was slow going, but he did it and it helped me as much as him. He didn’t feel like trying to get his strength back because “they” were just going to hit him again. This is an unproductive view in my opinion and I had medical personnel after medical personnel tell Dave, at my request, that was not a good idea. But Dave will do what he wants and he wasn’t interested. So now he has a lot to get back physically. I know he’s not alone, there are many of you that just had to stay focused on getting through your treatment and worry about the other stuff later. I get it.
So the dance for me has been to be nice, be understanding, be encouraging, and disguise the exercise. As you know I had a Yoga Instructor who lived with us last summer, and in lieu of rent she worked with Dave. It was amazing. It wasn’t hard on his bones and he gained much more stamina and energy from it. She’s gone now and he isn’t doing it and its frustrating. But, he has indicated to me that he’s ready and we will both be doing it together. Lord knows I have done a lot of sedentary activities through all of this. Sitting in a chair next to Dave in the infustion center is not very strenuous physical exercise! Who knew?
Its not so much a resolution for us, though the timing seems like it is. Its just that Dave has announced he is feeling a lot better and wants to begin to work on getting his muscle mass back. So we will embark on this new endeavor and I’m glad.
Does sleep walking count as exercise?
Check out those sites on some small things you can do to help combat the fatigue. There are some decent tips there. I’m told the fatigue does indeed improve, but it is most often very, very slow going. Do what you can, be patient, but definitely try to work on improving it. As a caregiver I was sure to let Dave know when I noticed improvement. It helped to encourage him. Remember also, that many of you are doing maintenance therapy AND continuing to work. Both of these activities will prolong your recovery from the fatigue. So striking the balance between understanding and pushing through is one we all share. Got any tips of your own? Feel free to share them in the Comment Section.
Dear Jane, I’m sorry to hear all this is going on for you and your husband. When my husband at 48 and racquetball champion was first dx I couldn’t believe how the onset of the disease was so “suddenly” destructive to his body, not to mention his emotional well being. He was in so much pain and just withered before my eyes in what seemed like days! Getting him stabilized with his pain and the start of his oral chemo was challenging and then facing the long haul of serious treatment was indeed daunting and one we didn’t look forward to either other than to hopefully get some resemblance of his former life back. I too got angry and it was very helpful to me to eventually have others to talk to, both patients and caregivers to help me understand how profoundly tired and weak they all were. I hope you both can find some other posts I have made to help you cope. Focus on the “head game” in addition to the day to day physical stuff you have to deal with. Your frame of mind as you embark on this road is important to cope. My heart goes out to you.
Thank you Lori….at last I have found someone who knows just how you feel! My hubby Ian was diagnosed with MM in June, after having a plasma cytoma partially removed from his upper spine. So far he has had the radiotherapy, and is awaiting 2 types of chemo and then stem cell treatment. But he is SO TIRED, he is hardly mobile at all, can just make it up and down stairs. I can’t believe in 4 months how someone can change so rapidly, a strapping healthy man of 60 has become very frail, tired and depressed (which is understandable heaven knows), also he developed abscesses on his thigh which are taking an age to heal because of his low immune system. Hopefully next week he will be able to start the first stage chemo (we are both dreading it) and then the long haul of further treatment. I find I am either compassionate or very angry that he can’t do anything at all, though I know he is so frustrated and angry
too. This is the nature of the disease, and what a terrible disease it is.
Hi Rene! I decided to give it a re-read as well. Dave said he was ready to begin exercising when I wrote this, but he hasn’t, be he keeps saying he’s ready. It’s still frustrating as he is working more and more. He loves his work, and I’m glad about that, but he needs to set aside time for his physical health as well. Getting your comment has renewed my resolve to have a little ‘chat’ with him!
Good luck with your check up! I’m glad Jeff is feeling good!
Lori-
I had to re-read this post because I had to be reminded that Jeff is not “damm lazy” LOL! It’s so frustrating…….I think because he is doing so much better I just expect him to be able to do everything he did prior to MM. Very unrealistic, I know. And, I’m sure he sees that frustration written all over my face, which I am sorry for. So, like I said, I needed to re-read this so I can get back to being kind, encouraging, supportive and understanding. Once again, thanks for your research, your honesty and your sense of humor! Jeff has a check up a week from today, including a PET scan. Because he feels so good, I can’t imagine we would get anything other than good news. I’ll let you know. Rene
Its vice versa in our house with B telling me I do too much, especially if it results in his tea being late! ;D
Girl! I was getting ready to email you! GREAT NEWS!
Lori…..love this one….next do one of fatigue of caregivers. 🙂
Our doctor’s appointment today went great and everything still looks “perfect”…..so he will start maintenance as soon as we can get it set up at home. I’m praying his energy will begin to improve. It has over this past month….but nothing too big….but that was with NO chemo….so when maintenance starts….just not so confident. And I start back to work on Monday. 🙁
I love how they ask him…..”Have you started back to work?”….are they crazy….I had to help him put his socks on this morning! Gotta laugh….better than crying. But I do admire those that ARE able to work so soon after SCTs.