• Jenny Livingston started the topic A balancing act in the forum Adults​ ​With​ ​Cystic Fibrosis 3 weeks, 5 days ago

    I have a clinic appointment tomorrow (in person, with PFTs) to check in with my doctor regarding the adjustment to my Trikafta dose. If you remember, a couple months ago I lowered my dose in hopes of reducing mental health symptoms that seemed to be related to Trikafta. Two months later, I can say with confidence that my mental health symptoms have significantly improved, but along with that some of my physical symptoms have worsened. I fully expect my PFTs to be a bit lower and I’ve had a few more sinus/gut issues since making the change, but I strongly feel that this has been the best choice for me. After my appointment, I’ll update with any relevant or interesting information.

    My question for today is this: Have you ever been in a situation where you’ve had to sacrifice aspects of your physical health in order to better your mental health? How do you find that balance?

    • You and I are definitely on the same page lately, Jenny. I am definitely in the physical versus mental space right now, and I think one of the “worst” things about my brain (lol) and my ability to function is that my physical sometimes IS my mental health? And by that I mean: I think I am addicted to the endorphins I get from dancing, moving, working out, sweating, and other such things.

      I really struggle when I’m sidelined (and no one needs this information, but even as a married woman who gets endorphins from married-people-things… I am sidelined from that too for three months, because of my sort-of-colon surgery 8 weeks ago!) So I am truly being held back from ALL the endorphins and happy feels life has to offer, including little silly things like shopping (can’t financially right now), or eating favorite foods (stomach issues right now), or writing as therapy (hurts my neck disc right now to write for long stretches), and – as mentioned- working out/dancing/moving and so on. I almost feel like I go through withdrawal or something?

      Whether or not this is right or wrong (I know this is not how everyone works so I feel sort of whiny trying to explain all of this), it really is how I get happy moments and release in life… So not being able to do all my cathartic things at the moment is really dang hard. I feel guilty that it IS this hard for me, because I know others perhaps wouldn’t mind any of the above at all. [And I mentioned some of this here, so apologies for being redundant]

      That long non-answer not withstanding… Let us know how clinic was? I just had my first in-person CF clinic recently too (ooh maybe I should write about it?), and it was exhaustive but lovely too because I finally have the best team. What about you? How did the Tri conversation go?

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