Dear Smile E.,
My spouse has a very hectic medication and treatment schedule. So they get tired and choose not to do their treatments. Or sometimes they don’t want to be a “bother”… How hard should I push for them to do them? Or should I even say anything?
Signed,
Worrying For My Love
Dear Worrying For My Love,
To be perfectly honest I’ve been there; I am there some days. As a PCD patient myself sometimes it’s very easy to just say I’m done, I need a break. And some days that’s okay, and some days it is not okay. In our world where we have little or no control over this beast called PCD, it is kind of liberating to say, “Nope not today PCD, I’m done.” Other times PCD seems inconvenient and it just gets in the way of things we’d rather be doing. Then there are the days that we absolutely too tired to move, and the effort to get our treatments or whatever ready to do seems too insurmountable to even attempt them. Being able to have some say over if we do our treatments makes us feel in control of an uncontrollable situation. I’m not saying it’s right or it’s wrong, it is what it is.
There is no magic answer to your question. Yes a gentle reminder maybe helpful, but constant nagging will only make you both miserable. However there does come a time where you need to sit down and have a real conversation with each other. Share your fears of the future with your spouse because of their skipping of treatments. Ask your spouse what you can do to help them navigate their hectic schedule. It might be something simple as helping them set up their machine in the morning while they are showering or what not. Or maybe they need help remembering to actually take time to do the treatments. Sometimes we all get busy, PCD or not, and forget to do something; we’ve all forgotten to eat before during an extremely busy day. Sometimes as patients ourselves we forget how our decisions to skip our treatments can impact others. Open and honest communication is always a great first step in navigating the journey with PCD.
Yours Truly,
Smile E. Turtle
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