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    • #15870
      Bailey Vincent

      Today is technically my husband’s day “off” from work (as he has only been able to find a part time job amid the pandemic), and it can often feel weird in contrast to my own. Friday is still a week day, so I homeschool my girls, post here, and continue on with my usual work.

      I’ve heard the phrase “Cystic Fibrosis never takes a day off” a great many times before, and I know there is truth to it. We should always do our treatments. We should always take our meds. But I was curious…

      Do you ever give yourself a day off?

      I don’t know about you, but sometimes I genuinely resent the things described as “self care”. Even washing my face, fixing my hair, preparing a healthy meal… Some days it actually feels like work. If I’m exhausted or sick, those routine habits become an actual To Do list, and the to-dos of treatments fall by the wayside or feel even worse.

      No one should skip life saving treatments and clearance routines on purpose, of course, but… Sometimes I just want a “day off” to refuel for the next battery. (For example, doing my nebs perfectly 5 days a week, but taking the weekend to be less strict with myself.)

      Thoughts? What about you?

    • #15907
      Paul met Debbie

      Interesting question. I have never looked at it this way. This is perhaps because to be able to take a day off, one first must indulge in the feeling that all the other days are “on”. So then the experience must be in the morning, opening your eyes, you are possessed immediately with the thought “another day with cf, let’s go deal with it” (consciously or somewhere in the background of your mind). Then a day “off” will suddenly arise as an interesting and attractive opposite. I don’t have this perspective.

      But if you do, well by all means, don’t let it be only words or thoughts, try it out! And report back to us how you felt on your “day off” and how it compared to the “days on”. I don’t think I would die from a day skipping therapy or even meds. It just doesn’t work that fast. It would take a few days at least, probably even (much) longer.

      I know however that my body would feel less energetic and more out of breath if my lungs don’t get cleaned in the morning. The evening session I could skip for a day I guess, next morning I would need more time no doubt (I have done that once in my life, coming home at 4 a.m. after a delayed holiday flight I went to bed without doing my nebs). Not taking my antibiotic for a day would not be noticeable. I could skip my vitamins and calcium for weeks probably before noticing any difference. With other meds, I am sure my body would react immediately (this has happened on occasion), for instance the omeprazole, the creon, the little snuff of prednisone. Just like it would feel the effect of not drinking for a day or not breathing for 30 seconds. Most of this didn’t happen here so far. Will it ever? I don’t know. I am just letting life take its course without any thought of manipulation. I don’t have the feeling that I “do” my therapy – it just gets done somehow and my body seems to be meticulous. I do nothing to prevent that. If one day my body is less meticulous or becomes even sloppy at this – so be it. Then that will be the new situation. Life will take care of that too. If I look at myself, my behaviour now is very different from that when I was a toddler. Still, I feel the same about me. The essence didn’t change, only the appearances.

      It could indeed help, as you mention, to look at all the cf related extra “doings” as just some other, albeit more elaborate way of “taking care” of life and the body, like we also do with eating, drinking, sleeping and breathing. I have made suggestions along this line on this forum before. Still, I admit in the end this is some sort of coaxing the mind into thinking something more pleasant. It helps when it prompts the mind to stop labelling the entire experience as something that negatively stands out in the rest of daily life – then it will just blend in and the resistance disappears.
      But in some cases, your mind will not let go but starts re-labelling the new label (this is one reason why nlp often doesn’t work). It then finds out after a while that it actually even can resists the notion of being able to look at all the cf related extra work as “happily caring for the needs of the body”. “I don’t like to see this as harpy self care anymore!”, it will say to itself. You seem to be saying this. And the problem is back again.

      To deal with mechanisms like this at the root however, takes a completely different approach to life and existence as a whole. You will have to want to look at the real questions. Questions like “who am I”, e.g. “who is thinking this thought about taking a day off”. Most people don’t want to look at this, by the way. Western philosophy and psychology don’t either. Even Carl Jung, who was the most “spiritual” of the western psychologist masters, who visited India and knew about the sages, and who was a mystic at heart, shied away from it, probably because he felt he had to protect his scientific reputation.

      The real question would be: how come you feel caring for the needs of the body as “work”. Who is feeling this, who is working? Is it really a matter of exhaustion that makes you look at it that way? Look closely in your mind and you will find resistance. Something in there thinks that it is running the show and it is feeling lonely, tired and unsatisfied. It’s your mind, the little “me” that pretends to be who you are. It might have no specific reason at all. It might just be the result of the mind’s habit to resist no matter what aspect of reality just to exert it’s own existence. Just like its other (opposite) habit of going after things it likes – also to feel alive for a little while. When reality presents a perfect mix of light and dark, the mind pulls them apart and favors light over dark (or dark over light if it so inclined). Just to make the difference. It is simply terrified of just blending in, accepting, merging and not existing any more as a separate mind. Both habits (resisting and wanting) are very exhausting and feel like “doing” and “work”. And the worst thing is: by wanting to exist as a little separate entity, the mind forfeits (in your name) the possibility of being the whole everything. It is a very, very poor deal. Life presents itself as you, which is whole and perfect. Then the mind pulls you apart, discovers some illusion like “health” and “sickness”, defines you as “sick”, decides that “health is better than sickness” for all kinds of weird reasons and starts to resist itself in your name. And then “you” want “a day off”.

      However, as long as this mechanism is in place, you even can’t take a day off. You will bring your mind along on your day off and it won’t feel free. Even on the day off, the mind will compare with the day on that will eventually follow, which will spoil much of the fun.

      You can however – and this is the only way to go – take away resistance. See through and dismantle the mechanism that underlies the illusion of separation and division. Then, the feeling of wanting to take a day off will probably disappear by itself. Find out by going inward who is resisting. Who wants to take a day off. If you resolve this question, all your problems will vanish because you will not experience yourself as separate anymore in the process we call Life.

      So I don’t think I feel the need to take a day off. I don’t have the feeling of “taking cf a day on”. Or even “taking life on”. So what could I possibly take a day off from? Life is taking me on, unconditionally and always. There is not even a choice in that. I don’t have to do anything for it to happen. I open my eyes in the morning and there it is. It is even there when I sleep, only then the brain does not make a note of it. It presents itself as the feeling that “I am”. Not this or that. Not sick or healthy. Not on or off. Not even “Paul”. Nothing in particular. It all happens effortlessly. Life happens. Dyspnea happens. Fever happens. Cappuccino happens. Writing happens. Exhaustion happens. Sleep happens. Love happens. Therapy happens. There is no separate “me” in this. The only thing I have to do for all this to happen is: nothing. Just not getting in the way be projecting a “me” in between. It’s totally beyond control, beyond understanding, knowing, everything. It’s effortless. It is all including. And I am that.


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