I can’t plan anything without planning time to rest. I literally have to schedule my whole day around when I can lie down to nap.
As I continue to navigate these unknown waters (to me) of life after cancer, I find the chronic exhaustion to be the hardest part. Every single day I have to lie down for a nap — and many times I fall asleep without even meaning to because I am ALWAYS tired.
Chemo fatigue is a part of cancer we never really hear about, but it has affected me more than any part of this cancer journey. If you would have asked me before I was diagnosed how a required daily nap sounded, I would have signed my life away in a second. Now, I’d give anything to be my energetic pre-cancer self again. ANYTHING.
This exhaustion is not like typical tiredness. It’s a bone-deep fatigue that literally stops me in my tracks. No matter how much sleep I get the night before, at some point in my day I MUST lie down to sleep. I have tried so many times to make it through — but without fail — I always succumb to the exhaustion. Right around one year after chemo, I finally went to see a doctor. We had labs done to check my blood — thinking maybe I was still anemic — but everything came back perfect.
My doctor officially diagnosed me with post chemo fatigue but could not tell me exactly why it happens or how long it lasts. For some people it never goes away.
This confirmation from the doctor was really helpful for my mental health because I was really struggling with the whole thing. I had started to feel really guilty for sleeping so much. I felt like nobody truly believed me that chemo could still be affecting me so long after it had left my body. I was worried my family would think I was making it up. I felt lazy.
I still have a hard time because it has such a profound effect on my life. I can’t plan anything without planning time to rest too. I literally have to schedule my whole day around WHEN I can lie down to nap. This is not who I was before. Even though I’ve been exercising regularly since finishing chemo, my body is still weak. It still hurts to do things that I could SO easily do before — like running. My own body feels foreign to me and I’m not sure I will ever get back to where I was before cancer.
It's just one of the many parts of life after cancer that people don’t understand. It’s beyond frustrating and completely uncontrollable. I just want those of you who may be going through this to know you are NOT imagining it — the fatigue is real.
I don’t have any life-changing advice on this except to say you are not alone. For me, knowing I wasn’t alone was the only thing that could bring me comfort most days. Now I just try to accept my new reality and take my rest when I need it.
If I can get even just one thing done on my to-do list, I feel accomplished. It’s hard to do especially as a busy mom always on the go — but this is my reality now and I am slowly learning to accept it. If you are also feeling this way, I hope it helps to hear you are not imagining it.
The chemo is still affecting you and it’s OK. Listen to your body and let it rest. The fact that you made it through in the first place is truly a miracle. Don’t lose sight of that!
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