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    • #16393
      Bailey Vincent
      Keymaster

      I posted on Monday about my love of reading other people’s daily routines, and how these posts from Paul are fueling the fire (although his are a lot more like written meditations, which are uniquely healing all on their own).

      Originally, I planned on sharing a bit about my own routine, here, but to be honest… I have been terribly sick the last few days. I had a partial bowel obstruction the last 48 hours, and it meant little to not sleep, tons of pain, and a lot of suffering-it-out at home. Luckily, I think the worst is over (though I know fixing this current prolapse situation will definitely eventually help too), even though the timing was so crummy.

      Despite having cardiologist appointments and all sorts of pre-op this week (for surgery that is supposedly next week), my routine next week is even more out of whack. For example, I have an important pain doctor appointment one day, my second dose of the vaccine the next (yay) and then surgery the very next day. Phew! What even is a routine any more?

      I definitely get a little frazzled when my “routine” goes out the window, so I’ve been trying to focus on what I can control and not what I can’t. Our health, as most of us have come to know, is a rollercoaster sometimes (and if you can’t tell, I’m that lame person who doesn’t ride the rollercoaster and loves seeing the dance performances at the gazebo around the corner instead).

      Question For You: When you feel out of control, what is a sentence, mantra or phrase you repeat to yourself to feel better?

    • #16395
      Jenny Livingston
      Keymaster

      I absolutely love rollercoasters! Just not emotional or health related ones…

      I’d say I’m a pretty flexible routine kind of gal. There are certain things I like to get done at a certain time of day, but nothing rigid or set in stone. When things get stressful and everything is out of whack, one of the things I do is remind myself that this isn’t permanent. I know I can do hard things, and I know things will calm down eventually. In the meantime, I tighten my grip on the safety bar, enjoy the twists and turns as much as possible, and try not to barf. Okay, my rollercoaster metaphor wasn’t nearly as good as yours, but I think you get it. 😂

    • #16403
      Timothy Bransford
      Participant

      Pre-CF diagnosis, I always believed that I alone controlled my destiny. Fate was just the consequence of my choices. This belief allowed me to function in high stress envronments and, for the most part, it held true. I also believed that a nuclear bomb could go off and I would emerge, shiney and new, from the dust cloud. Alive and well. Ironically, this notion was brutally proven to be untrue (to my great surprise) in Kharoum Sudan (of all places). 1 mile from the longest river in Africa…

      The inability to control my world caused me to lose control of myself. I spent several months in Ward 52 at Walter Reed Medical because CF took all control of my world and smashed my illusions. I lost emotional control and I was devestated. It was an epic nightmare.

      With help from an emotional coach and Xanex, I was able to reconcile my world one piece at a time. Ultimately, I was able to move forward with a new paradigm.

      I have lived since with a simple mantra to do my best and rest in the result. Sometimes the result is a victory whereby I not only rest but revel. Often it is a loss whereby I mope a little and make those around me feel a little uncomfortable. With either case, I try not to linger too long in that moment. But I do allow myself to linger. Then I get back to doing my best.

      It seems like such a simple thing. But it took the long arm of CF to bring me to this truth.

    • #16404
      Paul met Debbie
      Participant

      I think the solution is in the question. Being out of control does only feel bad (resulting in you grasping for control) if you resist it. You resist feeling out of control because you have a notion that 1. Usually you are in control and 2. This is how it should be.
      Looking carefully at those assumptions, you will find both are largely incorrect.

      Wanting or thinking to be in control is one of the strongest illusions of the mind. It is very frustrating as well, because most things in life happen to us without us having real control about them. If you look at the situation you are in now, this was almost entirely caused by things you had no influence over, starting with being born (and, in your case, ending with a sneeze). Still, even without your control, everything happened without any problem and brought you to where you are now. If you don’t judge your situation, you are still fine. Your control was never needed and it happened by itself.

      The second assumption presupposes that we know what is good for us, better than life does. But we don’t have the grand picture. Life knows better. Trust it.
      To illustrate this I quote a little story from one of my earlier posts:

      There is an old story of a farmer who’s only horse ran away. The neighbors came to him and told him how unlucky he was. But he said: “perhaps”. The next day, the horse came back and was followed by 4 other fine horses. The neighbors came to him and told him how lucky he was. But he said: “perhaps”. His son tried to tame one of the new horses and was thrown of and broke his leg. The neighbors again told the man how unlucky they were, and again he only said: “perhaps”. The following month, army officers came to draft young men to fight in a war, but the son was not eligible because of his broken leg and could stay home. And of course, the neighbors thought he was very lucky, but the farmer only repeated: “perhaps”.

      For me, words or mantra’s never meant much, they fast become too mental and loose their meaning. However, reminding myself of the fact that being not in control is fine, that everything has been taken care of already, brings my unease to a halt quickly. In other words doing the opposite of grasping for control does the trick: surrender to what already is and trust that this is fine, no matter how it will turn out. And on a personal note I always found thinking of Debbie a great panacea. So that would be my mantra. You are welcome to try, but it might only work for me 😉

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