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Why You Need Reserves to Fight Cystic Fibrosis

Fight CFHaving reserves to fight cystic fibrosis is one of the single most important things you can do for your health, both your body and mind. Without reserves, infections take root much quicker and much deeper and expend your valuable weapons that come in the form of antibiotics.

I don’t know of a single CFer who hasn’t experienced getting completely run down and getting sick. We push ourselves to be “normal” and our bodies can’t keep up a normal life with the bugs that attack us 24/7/365.

I used to be “normal.” I had a desk job working 40-50 hours per week (over 80% of full-time males work more than their scheduled 40-hour work weeks) and went to college 2 nights per week until 9:30pm. While doing that, I was on IVs every 6 months. Every semester.

It wasn’t until I figured out what my body could handle did I stop taking my reserves so low that I needed medical intervention. I can handle a lot, but not for very long. I can take on emotional stress for a few weeks. I can deal with sleep-deprivation for exactly 3 days. I can bounce back from hard labor if I take a day or two off afterward. For me, that even includes traveling. I need to take the next day easy.

This doesn’t mean you’re a wimp. I used to think that it did mean exactly that. It took many cycles of getting a PICC placed for 2 weeks to realize that I was being a fool perpetrating folly every 6 months (or even 4 months). I like the definition of “folly.” Folly is: a fool in action. That was me, playing the fool, thinking I could run around like everyone else and pretend I didn’t have CF.

Sure, this sounds all fine and good coming from a guy who works from home, has his office 5 feet from his bed, and only averages about 10 hours of actual labor per week, but that is what I can do safely. Sure, I can put in my billable hours than that in bursts, like doing a site in 3 days working most every day (I recently coded for 2 days straight and even skipped lunch without noticing), but then I need to take a short break. Running the business isn’t just about labor – I also have to do support, reply to inquiries for work with great thought and consideration. I don’t think I can accurately track how much time I spend on e-mails and industry research, but I’d wager that things other than actionable work that brings in direct income takes up 35 hours each week.

Look, I’m over 40 hours again. I also do nearly 4 hours of treatments per day. I also need to invest time as a husband, and soon a foster parent. This means I do my best to take Saturdays and Sundays completely off. I can seriously guilt myself into answering business e-mails on the weekend because my clients deserve it.

They do.

However, they also deserve to have a healthy webmaster. Beautiful deserves to have a healthy husband. You deserve to have a healthy CF dude to write about how to be ever-healthier to change the standard of thinking about CF.

What have you found to be your limitations, that if ignored send you spiraling into an exacerbation?

Comments

  1. So true! If I take Elliott out lots and mix with lots of people guaranteed he will have a viral infection within 2 wks.. SO now I spend at least 3 days at home with him so he can rest and have down time..seems silly but I know he needs this. He is so active spending upto4hrs a day bouncing on his tip toes..OK he is only 21 mths but got he has much more energy than us.. so he quickly fizzles too.
    Once again Wise FB strikes again!

    • Thanks. It’s good that you realized this so early in life. That will hopefully make for a good lifetime pattern of resting. After that, it’s up to him and al of us need to figure out limits out on our own. I’ve had well over 20 blockages learning my limits of food and the enzymes… with a few forgetful moments thrown in there for extra measure. 😉

  2. Great article Jesse.   Very similar situation with me.  If I do to much and don’t take a nap or take it very easy over the weekend I can get run down very quickly.  Sometimes when I fly and especially international trips it can take me several days or even a week or so of extra rest to get feeling “normal” again.   I find that when I travel if I can sneak a Cayston treatment either in the airline seat (if I am sitting next to my wife)  or in the bathroom that can help ward off the bugs or at least keep me going until I can do my full treatment schedule.   Have you ever found that even without overdoing it you sometimes just get rundown and have to take a day of extra rest and then you feel good again? ( I go through that once or twice a year.)  

    Just to get ready for my next trip to Columbus, OH for the Vertex study next week I have been walking and exercising more and actually added another night in Columbus so I didn’t have to fly out late afternoon and get in at midnight.   Like you said keeping just a little bit of reserve on hand helps a lot in keeping us off IV’s and out of the sicko bed. 

    Mark

    • Yes, it even happens when I’m not pushing it, but those are usually from a lack of intentionally resting when I should or because of emotional baggage… like not having enough money to continue with the foster parenting process earlier last year. I had to rest up, get back to doing good work WHILE being rested, and build up the business tortoise-style.
      Hey, we’ll be near Columbus for a wedding in Cleveland in July. Maybe you’ll be in Columbus on our way in our out – we’ll be driving.

  3. Lauramagsamen says:

    As you know, Jordan is in those teen years and tries to do a lot of what we call, “burning the candle at both ends.”  Trying to keep up with the her friends that don’t have CF is daunting, at times, and she has to take a crash and burn day every few weeks.  I know when we travel, she needs a good day of rest and gentle activities while we’re gone.  Otherwise, the rest of the trip is difficult.  Even in Hawaii, this summer, we took one whole day of sleeping in and lounging in the room for part of the day, followed by just a simple jeep ride to sight see.  Hopefully, she will become more familiar with what her body needs and will actually listen to it.  I am so grateful for the “old CFer’s” that she networks with in order to guide her to these valuable lessons!  Thanks!

    • Thanks, Laura. Oh, she’ll learn, but it won’t be without mistakes – and likely some regrets – along the way. Expect a change in what the body can take around 22-25 and again at 30-32. I wish it wasn’t so, but you’ll have to stand by as those mistakes happen. It took years before anyone got it through my head (it took Beautiful took 3 years of marriage) about the importance of stopping the slide.

      I’m always here for moral support and a firm butt-smack when someone is about to pay some “stupid tax” with their health. I need a butt-smack every now and then… which is why I finally gave exercising a 110% try.