How to battle late effects

ALLsoldier

Hello, I’m new. It’s been validating to know I’m not alone even if the posts are old. Sadly I can relate to so many of them. I’m a survivor of leukemia over 5 years dealing with a ton of late effects of treatment. I’ve gone through chemo, radiation, and a BMT. And I vaguely remember a 3 page list, front and back, of oral meds and injections that I had to do after all of that. I mostly deal with fatigue and cognitive issues but then there’s also the random body pain, heaviness, neuropathy, cramping, and nausea. My doctors have ruled out other causes of my symptoms but will not admit they are from treatment. I know they are 100% from treatment. I often leave my doctors’ appointments disappointed and frustrated because I should be grateful that I’m alive. But if I’m perfectly honest, I’m not. Yes I’m in remission but this is no way to live. I was a highly functional, active, and educated person prior to this and now I struggle with the simplistic things. I have a young child so just talking with other parents is draining and and defeating because I can’t explain what this is like when I look “normal.” I have a post-it that says NO just to remind myself not to put myself into situations that make the fatigue or cognitive issues worse. I’ve taken steps to try to improve things like braintraining apps, writing everything down, and conserving energy. I’ve tried working out when I feel good, but it puts me out 4-5 days of recovery. Does anyone have any advice for beating the fatigue? I know if I don’t exercise my body will ultimately shut down. But how do you exercise when your body feels horrible for most days? Also, what motivates you to keep going? I feel like I’m fighting a losing battle.