One of my father’s favorite sayings was, “I’m in pretty good shape for the shape that I’m in.” He was being funny of course, but these days, I can totally relate. It’s all about perspective. Today, I’m thinking about what it means to be “fit” as I walk at a snail’s pace on my treadmill and suck saltwater into my lungs, which are being violently shaken by my therapy vest.
If you use the biologic definition of fitness,
The genetic contribution of an individual to the next generation’s gene pool relative to the average for the population, usually measured by the number of offspring or close kin that survive to reproductive age.
then I’m toast. These genes were surgically stopped in their tracks decades ago. On purpose.
If you get a bit less Darwinian, fitness could be described as:
The capability of the body of distributing inhaled oxygen to muscle tissue during increased physical effort.
This is getting closer to what I’m after. But living with cystic fibrosis takes a special kind of fitness not intimated by either definition. My favorite description of fitness is one I heard on a podcast yesterday, which was something like,
The ability to do what you need to do, given the exigencies of your life, and to have a little left over for emergencies.
In other words, to be in good shape for the shape that you are in.
The “exigencies” of our lives include things like constant immunological battles in our lungs, defective insulin production, and shitty (pun intended) digestion, to name a few.
To be fit with CF means to be able to thrive, given all of these complications…and then, to have something left should an emergency occur.
I have a CFit client who is a perfect example of CF fitness. This woman is a runner, and also lifts weights and dabbles in Crossfit. She’s hardcore. She related a story to me the other day which left me amazed.
She was running with a group of people crossing a bridge, when they noticed a child stuck on a log in the water below. This was in Florida, and the water was swampy and apparently the home of many crocodiles. The kid was unable to swim to safety, and was in a precarious position, to say the least.
So my client took off at a sprint, as she needed to run nearly a mile to get to where she could enter the water. Then, she had to swim to the kid and keep him/her (I’m not sure) from being swept into crocodile territory until help arrived.
Now that is fitness!
If you are reading this thinking, “that could never be me,” you are missing my point. If you have CF and are simply moving more each day in attempt to improve your health, then you are an athlete in training. You don’t need to be a child-rescuing ninja. If you don’t like to run, then walk, or swim, or cycle, or lift weights, or swing a kettlebell, or play badminton, or… something! Prepare for that emergency. It may be a kid in danger, but more likely, it’s the next exacerbation. Whatever it is, it will be in your best interest to be stronger than you are right now. Unless you are my ninja CFit client…she’s already in pretty good shape for the shape that she’s in.
It was a little over a month ago that I lay on my weight bench in the garage with tears of frustration streaming down my face. I had just completed a 15 minute “workout” consisting of a few unweighted lunges, some hip bridges, and 3 sets of 5 reverse abdominal curls. This was all I could do, since I still had a PICC line in my arm and couldn’t chance any upper body work (I’ve learned that important life lesson). As it turned out, the 3 exercises I chose were clearly enough, as my heart rate after the last rep was about 300 bpm and I felt like if I rolled off the bench right then, I might have to call my son in to help me up.
I was a mess.
I suppose I had a good reason for the tears. This was the third bout of pneumonia in just four months, and I was sick and tired of being sick and tired. It was also my first attempt at any form of exercise other than easy walking in well over a month, and my physical fragility was frightening. Normally when I exercise, I am a bit of a taskmaster. I push myself pretty hard and usually do more than I set out to do. But today was different. I was a complete wimp.
I was nearly at the end of my course of antibiotics and the PICC was coming out in two days. This meant that I had been receiving medications to eradicate lung infections for four of the the last five weeks. That is a lot of antibiotics. There was likely not a viable bacterium to be found in my body. Indeed, my cough was gone, the pain of pleural inflammation was gone, and I could actually eat again. But, where was my mojo? I still felt like crap, and this was the kicker. Normally, at the end of a course of IV’s, I am raring to go, having planned my fitness regimen for the next three months. This time was different, and I was worried.
Of course, my partner reminded me that I would get better…that I always did…and that I needed to be patient. My rational mind knew this, but my emotional self kept whispering, “What if this is it? The beginning of the end? Your 53 year good luck streak has to end sometime…”. I hate that voice.
So, ten pounds of muscle mass down (which was obvious as I watched my legs trembling as I got up from the bench), I vowed to give my secret weapon the old college try and to stop listening to emotional self until the end of the trial. Antibiotics are needed, as are pulmonary clearance and airway treatments. Sleep is king, and hydration and good caloric intake does wonders. But, the best medicine of all, at least in my experience, is daily exercise. It makes me breathe deeper. It gets me outside. It makes me cough up junk. It builds an appetite. It makes me, ahem….regular. But most of all, it feeds my soul.
So, tears now dried, I developed my plan. It was a modified version of my plans of the past…much easier…much slower progressing.
Walking is always the foundation of my recovery, and will be until the day I can’t walk anymore. But walking further than I should due to training for a half-marathon when sick was what landed me in the hospital with pneumonia number two, so I had to be cautious. I decided to cut in half the time I thought I should be able to walk, and add just a few weight training exercises only three days/week. These were front squats, kettlebell swings (only 10 at a time), and Turkish get-ups with a very light kettlebell. That’s it. I wanted to do more, but my shoulder was messed up (thanks to levoquin), and I had to be careful not to rupture a tendon.
So that’s what I did. Over time, my walks became walk/jogs, and my two kettlebell exercises proved to work magic, as I knew they would. Today, I’m doing swing intervals as easily as I was before the s&#t hit the fan back in January. My shoulder is getting stronger and I’m able to press again. I can breathe. I’m not coughing. I’ve gained back 6 pounds.
Yes, the antibiotics did wonders. Thank God (and Barb) I have insurance and great medical care! But there is no doubt in my mind that what converted me from that trembling, weak mess lying on my bench last month to today, looking forward to my get-ups and KB presses, is exercise. Exercise is medicine. Very slowly but surely, it works to build up strength and endurance, to improve appetite and thus enable weight gain, and to bring me out of the doldrums to enjoying my fantastically fortunate life.
I was scheduled to walk the San Francisco Rock-n-Roll Half-Marathon last weekend. Unfortunately, life had other plans for me and now I have a PICC in my arm to deliver antibiotic nectar to my lungs, as I ended up with pneumonia 5 days before the race. Sigh. Such is the life with CF. You think you are on top of the world, conquering all there is to conquer as you build up to walking 13.1 miles, and then BOOM, you are on your back wondering what just hit you. I’m sort of used to this by now…that happens after living 53 years with a disease that is supposed to kill you. Nonetheless, each time it happens, I come away with a small life lesson. Today’s article will hopefully prevent someone from being as stupid as I was.
Here’s the thing: There is an attitude amongst the “normals” (by normals, I mean those that don’t have CF; not that this makes them normal in any way, but “wildtype” might not be understood by all) that what doesn’t kill you makes you stronger, and that you should just go out and overcome whatever tries to get you down. For example, I recently read this online somewhere (can’t remember where), “To put it simply: pushing yourself physically reveals what you are made of mentally.” I read it while I was in the hospital last week and here was my response that I jotted down at the time: “hahahahahaha, that’s vat you think, fatso.”
Sometimes pushing yourself physically reveals that you are make of hot air mentally.
What worries me is that this attitude is very common in CF circles these days. I read on FB all the time about people who are running with PICCs, doing hardcore exercise routines even though they are sick, trying to fight off CF by proving they can beat it. They know exercise is good for them, and don’t think that there is such a thing as too much exercise.
I get it, and I did this too. I still do this, apparently, which is why I have pneumonia now. But at some point, it doesn’t work anymore, and you actually have to do nothing but rest when you are sick. I know I sound like an old lady or mother or doctor or someone you don’t want to listen to, but let me tell you a story:
I trained for the Rock-n-Roll like I did the two previous times I’ve done a half. Shortish walks (up to an hour) during the week, and one long walk on the weekend that grew progressively longer as the race approached. I started in December, which was a good thing, as January never happened. So by mid-March, I was up to 10 miles for my long training walk. Then I caught a cold, and on the day I was to walk 10 miles, just three weeks before race-day, I had a fever and wisely chose to not train. This decision completely used up my allotment of wisdom though, because even though I was still not completely well, I chose to walk eight miles the next weekend. Coughing the entire two hours, I plodding along, never dreaming that simply walking could ever do much harm.
It first dawned on me that perhaps I had made a mistake when I literally had to lie on the floor for an hour after arriving home before I managed to get up and get water. That is how exhausted I was, after a mere 8 miles, when a previous 9.5 miles walk felt like nothing in comparison. Then I began to feel a bit chilled, and found a thermometer. This is when the reality of my stupidity hit me. Fever…productive cough…exhaustion. What could that mean?
The next day, the fever approached 103, and it was x-ray time, followed by hospital admission time. Pneumonia…both lungs this time, for good measure. “Half-marathon, my ass,” the Universe said.
Maybe it’s my age, but I’m starting to think pushing oneself to exhaustion is almost never a good idea, even if you are healthy. Obviously, this becomes more important when you need your immune system to be fully on board at all times do do battle with chronic lung infections. There is a new(ish) thought in weight training that everyone seems to be writing about these days that I am finally going to try. The idea is to NEVER exhaust yourself, to always leave the gym feeling better than when you entered. The same idea can be applied to conditioning type training. Of course, you need to push hard enough to breathe deeply and frequently, and even to cough. But when it’s over, you shouldn’t have to take an hour to get up off of the floor.
Months ago, I was very inspired by a blog post I read from the Unknown Cystic. If you don’t know him, I highly recommend that you check out his blog. I’m not sure how he did this with a bag over his head, but he built a treadmill desk, and proceeded to log miles and miles each day as he toiled at his at home job. This little nugget percolated through my brain over the summer, as I tried to figure out how to do something similar.
Then, the back thing happened, and suddenly it hurt to sit down for long periods of time. So a percolating idea became much more urgent. As I have the carpentry skills of a basset hound, and not a tool more complex than a phillips screw driver (which one is that?), I went the pathetically lazy route and bought the damn thing–other than the treadmill, which I had. If you read Unknown Cystic’s articles, you will see how he did it and be much more impressed.
Here’s all I had to do:
1) Convince my teenage sons to bring the treadmill inside for me. This was not as easy as you might think, but eventually they caved and proved that they were much stronger than their mother.
2) Order a TrekDesk on Amazon. Ching.
3) Drag the 80 pound box through your house to office. This is not recommended if you have a herniated disk, but boys were unavailable.
4) Assemble desk. This is supposed to be easy, and I guess since I was able to do it, it must be.
5) Lift desk up and over treadmill–again, not recommended with disk herniation.
6) Start walking. Get a FitBit or something like it, and try to create a new record every day.
7) Say goodbye to back pain and hello to foot and leg fatigue (but this gets better)
I’ve recently had direct experience with a concept called “self-limiting exercise.” This term was introduced years ago by Gray Cook, a well known physical therapist, lecturer and author. According to Cook, self-limiting exercise “requires mindfulness and an awareness of movement, alignment, balance and control. Self-limiting exercise requires engagement.” Think the polar opposite of cranking on an idiot-proof weight-lifting machine or sitting on an exercise bicycle while reading the latest hit romance novel. A great example of a self-limited exercise is running barefoot. Without shoes on, the runner gets immediate feedback from sensory neurons in her foot when she over strides or strikes the ground heel first. The feedback is, “ouch, don’t do that,” and she immediately corrects. But any exercise that imposes natural obstacles and requires technical attention is self-limiting. When form breaks down, the exercise must be stopped, or else bad things happen.
My current “natural obstacle” is a herniated disk between L5-S1 in my low back. I was stupid and lifted a heavy, water-logged raft onto a dock at a weird angle. Then, just to further prove my complete idiocy, I proceeded to carry a heavy basket full of wet towels up a hill to the house. At that point, my back was screaming bloody murder, and I couldn’t bend over. This was a few of months ago and I’m almost healed, but man, have I been knocked over the head with the concept of self-limitation!
One would think after an injury like mine, I would rest my back. And I did for a couple of weeks because I literally couldn’t do anything other than walk…slowly…at first. But, thinking it was just a back strain, as soon as the pain relented a bit, I eased back into jogging (no problem) and then weight training (BIG mistake). The dumbbell rows kicked my ass, and I was back to square one–walking slowly. At this point, I realized perhaps I had been a bit premature and promised myself (and others) that I would cool my jets and rest.
Then I had to blow an FEV1. As you know, pulmonary function testing requires major effort from every single muscle from the bottom of the pelvis to the tiny muscles of facial expression. In the middle of the “Keep blowing…keep blowing…come on….a little longer” (you know the drill), my entire back contracted into a huge knot with the density of the universe just prior to the Big Bang. Yes, it hurt like hell and my score was pathetic. I know what you are thinking: “What was she thinking?” Well, I didn’t have a choice. It was for a certain research study in which I may or may not be a subject and about which I cannot speak.
Then came the MRI and the diagnosis, and the beginning of my very mindful manner of movement. Here is what I have learned from this experience: My body is boss, not my brain. I wanted to swing a kettlebell so badly…they were taunting me from their home in my garage. But I couldn’t even pick up the lightest one I own without major pain. I actually had a back spasm from picking up my month supply of colistin from the Kaiser pharmacy. How embarrassing! And how extremely humbling.
So for the last month, my badass routine has been a daily dog walk, followed by some planks and hip bridges. Of course, I’ve been deathly afraid of losing strength and wasting away into a waif-like creature, not to mention junk accumulating in my lungs. But, alas, this did not happen. In fact, this period of actually listening to my body tell me what to do (and what not to do) has provided a much needed break from lifting. I’ve lost exactly one pound (and this was probably due to a miscalculation of the enzyme requirement for a bacon cheeseburger yesterday).
Back at the gym now, I’m slowly getting back in the saddle, swinging a very light kettlebell, doing some easy Turkish Get Ups, and body weight exercises. The squat rack is beckoning, but I am not tempted yet. My PT has cleared me to do “whatever doesn’t hurt.” Sounds like that means self-limiting exercises. Lesson learned.