Caring and understanding people: Shellie, you're not acting like yourself. I've never known tiredness or fatigue to slow you down.
Me: Yeah, well, I'm on drugs. So I'm not myself. And I probably won't be for a while.
Caring and understanding people: Why not? I mean, the virus is gone, right?
Me: Even though the virus is undetectable and my liver enzymes are normal, doesn't mean I feel well. I don't feel well. I feel like crap. I'm tired all the time. I cannot recuperate with rest. What rest I do get is not enough, even when I look or may sound "good" to you.
Caring and understanding people: But you're OK right?
Those aren't the exact words I hear from others but it feels that way. It's been emotionally difficult dealing with and accepting my new limitations and the dependency this treatment brings. But more so, it's been both difficult and awkward interacting with others - at times.
Because I'm not bald, jaundiced, bed-ridden, physically handicapped, vomiting, or "anorexic" looking, it appears as if nothing is wrong with me.* I just look tired. So often, even friends "forget" and don't seem to understand why I'm tired. Or they presume they can relate by equating it with routine fatigue, or the hot weather, or even pregnancy. I've experienced all of those things and I can definitively say: I appreciate their love, care, support and effort to relate to my pain. And... this is not the same.
* I'm not being inconsiderate or insensitive by my choice of descriptive adjectives. I've lived them - 25 years ago.
Then the awkwardness comes in when I don't (or can't) match their energy level. "This is not the Shellie I know," they say. Well, quite frankly, I'm not the Shellie you "know." I'm the Shellie on chemotherapy - harsh treatments designed to kill a harsh virus trying to kill me. So in order to kill the harsh virus, the drugs have to be harsh, which means they are harsh enough to kill me. So, no, you may not recognize me, depending on the day. After all, I'm on drugs. And drugs kill. (I'm cracking up as I write this. There's that feisty-ness that's been missed lately! Just so you know...)
I'm learning it's healthy for me to be as I am. I'm not pressuring myself to put forth the effort to become how others are accustomed to me being. Now don't get all dramatic on me: I'm not behaving badly, y'all. You know that. I'm not clinically depressed or flat out mean or anything dramatic like that. I'm just tired beyond tired and I have "hard" days. "Hard" days are days that are normally manageable but because of the unpredictability of my symptoms - or daily response to the meds and their side effects - this day or that day may be significantly difficult to live through. Often, it looks like a day I should be able to handle, even though I move slower through it.
When my day is "hard," I get short of breath from simply talking, I get rest but still need rest, I don't recuperate even after a full night's sleep, I may be dizzy or slow of speech or thought, I may be sensitive or irritable to light and sound. On a "not-so-hard" day, I'd be able to run an errand or even an extra one. On a "hard" day, the only appealing thought is a pillow with my head on it, in a quiet room, with the lights off, and no movement. This reprieve doesn't happen very often. Lately, I've had to steal those movements. That's a "hard" day.
The experience of "I'm having a good day today" has been less frequent these last 4 weeks than the first 8.
Anyway, I thought it was a good idea to share the impact my change of demeanor may have on others.
Fellow patients: be prepared that caring people - even understanding people - may not "get" you, or may not know how to respond to you when you don't "look" sick or "sound" like you're in treatment.
Just be accurate and honest with your feelings and don't sugar coat just to pacify them. I need to focus on my healing, not others' responses or expectations of me. I simply don't have the energy to manage that. And, therefore, the healthy choice is - to not. Duh. Caring and understanding people may feel awkward about the "different" me. And...they'll be fine. Hopefully, they'll accept me as I am on a given day, because that's what they're gonna get.
Honestly, this is easier to write than to put into practice. I, too, miss her: the cheerful-energetic-hospitable-feisty-sharp-take charge-witty Shellie. So I can relate to the caring and understanding people in that way. She'll be back - in a little while.
Living in fear is working hard not to lose in the end. Living by faith is knowing I will win in the end. A faithful life is a free one. A fearful life is a defeated one. - Me