i feel like i went to combat against a virus and i lost. my body wholly betrayed me and i can't figure out how to restore my love and faith in a body that feels so defunct, so incapable, so pitiful. i threw my time, energy and belief into restoring my health and preventing the virus from turning into a lung infection. i invested hours upon hours each day on extra nebs, extra airway clearance, extra rest, anything i thought could possibly help the instant as i felt the virus coming on, but it wasn't enough. truthfully, i'm not sure anything would have been. my lungs are so weak that something as small as a regular old virus disrupts this delicate, precarious mirage of health i work so freaking hard for each and every day. i can't help but feel painfully disappointed in myself and then so guilty for resenting my own body. it feels so unnatural, even ungrateful.
the long story short is, as you can probably deduce, i wasn't able to stop the post-vacation virus from settling into my chest and becoming a lung infection despite my best efforts. the really good news is i'm feeling like myself again after a trial of (1) cipro/doxy [unsuccessful], then (2) inhaled vanco [unsuccessful], then (3) inhaled vanco + doxy + (nearly) three days of iv hydration therapy (more to come on that) + two weeks off from work [finally, successful].
i know i should feel fortunate that i was able to overcome my exacerbation with a relatively noninvasive mix of therapies and without iv antibiotics, and i mostly do, but i also feel so betrayed that i succumbed to such a unimpressive, minimally threatening invader in the first place. everyone else's body was able to shake it off so effortlessly. don't get me wrong, i'm incredibly thankful that my sister and parents have hearty immune systems that worked as they should, but i just really wish my body met the challenge too.
i feel like my mind and body are in conflict and that is very unsettling to me. we're so mismatched right now. my mind is content, excited, eager, forward-looking, confident and strong and my body is weak and fragile. i don't say that to whine or be self-pitying, it's the truth. with an fev1 in the mid thirties, the reality is i'm a 26 year old with a bright future and failing lungs. what a dichotomy! i yearn for a body as hearty and resilient as my mind feels. i know i have to find a way to believe in my body again and i'm searching really hard.
**disclaimer: i debated posting this for fear of sounding self-indulgent or pessimistic, but i finally decided to move forward because, after all, this is my dedicated space to vent and i have a fierce loyalty to grit and honesty. in my life with CF, that involves the low times along with the victories and joys. i want to assure you that i know that while these feelings of failure and misalignment are very real, they're also, like so many things, temporal and fleeting. i have no doubt i'll eventually find the faith in my body i'm seeking again, it just may take some time.
Oh, Em, I'm sure it feels good just to get this off your chest. It is a disppointment when our bodies fail us. I didn't see this as being whiney or pessimistic at all...just how you're feeling at this moment in time. Sending you love and hugs from Ohio xoxo
ReplyDeletewell written and eloquent, as always.
ReplyDeletei have struggled for a really long time with the mind/body (mind as body, mind vs. body, mind over body, etc, etc) for a very long time. i haven't come up with anything that works very well yet, aside from just remembering that everyone has weaknesses and it possible to love something despite its flaws. totally hard sometimes, obviously, but still possible.
much love and light to you, em. and thanks for sharing yet another awesome piece of yourself.
Emily, Your willingness to be open and honest is one of the things I appreciate about you. Thank you for sharing. My best to you as you continue to get your feet back under you. So sorry this hit you so hard.
ReplyDeleteEmily,
ReplyDeleteI totally get you. Sometimes CF just sucks and the only thing that makes it a little bit better is saying that out loud (or in a blog.) So say it. We're here to listen. :)
- laura
love you em! hate failing lungs. :( stay strong - it's the best you can do and it does help!! xoxo big hugs, b
ReplyDeleteyour honesty is one of the (many) reason i love you em, so never apologize for it. you are by far one of the most resilient and optimistic people i know but it's impossible to be hyper-positive all the time especially when things get really hard. i feel privileged to read what you're thinking and how you're feeling because it allows me to better understand what you're going through. i can only somewhat imagine what it must be like to feel betrayed by your body to this extent. thanks for articulating it so well. i hope it helps you to express it. thinking of you a lot!! love you so much. <3 carlita
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