In following my own advice about taking time off for your reserves, I slept in until 8:30 both Friday and Saturday mornings. I didn’t walk Friday because it was a cold drizzle after treatments and a full-on downpour around lunchtime, so Beautiful and I did a mile-plus slow walk today.

I e-mailed my fellow lighting dude for the church’s light board Friday and let him know that I’d had a rough week and felt the need to not get up at 5am Sunday, so we’re switching weeks to let me sleep in again today. I’m probably not even going to church because I can still feel the stress in my lungs and being around that many people sniffing and coughing because they won’t stay home when they’re sick is sometimes just asking for upcoming issues.

I intend to rest, take a long walk, catch up on blogs and video posts in my industry, watch a Blu-ray with Beautiful, and write my Monday post. I might be wild and crazy and dabble with some footage I shot today or continue working on my ebook for residual income.

Know thy body and listen to it when it says to slow down.

Trust thy spouse and listen to them when they say to slow down.

It still makes Beautiful nervous about how I feel when I say things like, “I think I’m going to take the morning off,” or when I think it’s best to stay home from something fun or something we’re dedicated to doing regularly. In two years of going to small group that met pretty much every Monday, I think I stayed home once or twice because of stress or being sick (one of them was after a Boniva shot on a Friday).

I’m the last one to slow down, so when I do, she usually has cause for concern. I can’t easily sit idly by and rest. Sure, I can flip a switch to do it, but its far more likely to be an external switch like a bad day pity party or a fever. Very rare is the day where I’m just sitting on the couch literally doing nothing. Doing nothing usually leads to sleeping.

This time, I’m fine and I’m trying to stay fine because I sense that pushing it (even to “normal”) will leave me compromised. Stay healthy.

I got an e-mail from a new reader. She’s college age (I call them “the unfortunate years“) and wasn’t doing treatments and had to pay the price by taking a semester off. Her question reads:

I’ve gone so long not doing the things I need to stay healthy, that building up a routine for myself and sticking to it has been hard to do. Do you have any tips on getting yourself into a good routine? I do the Vest, Acapella, Pulmozyme, 7% Hypertonic Saline, Cayston, Tobi, and Colistin. When I ask at my local CF center about tips they say “Well, just do what we tell you.” which is correct, but I thought someone who juggles a full CF routine and a life may be able to help me a little more. Thanks for writing your blog. Thanks for being so honest. You’re doing a great thing!

Is there a single one of us who hasn’t heard this from our CF doctors at some point in our life? That’s a great question and one that I didn’t have an answer for until too long ago. Each of the last 3 times I’ve been to clinic complaining about feeling run-down and easily short of breath, Bill (the clinic’s RT) would tell me to do aerobic exercise for 30 minutes 5 times per week.

I’d nod my head like one of those drinking bird toys, knowing full well that I 1) didn’t have energy to exercise and 2) I didn’t have any more time in my day that wasn’t taken up by eating, treatments, running the business, and resting enough to continue doing all of the preceding items.

Then Spiriva changed that. I started on Monday morning after 2 days of DuoNeb and felt so good that I declared it was time to walk after treatments. Thus it started. [Read more…]

Having 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. [Read more…]