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.
Since the previous post was a bit more serious and sarcastic than I normally get, I need to lighten things up a bit. Laughter is, after all, the best medicine.
I wrote the below post almost 31/2 years ago (wow, time flies), and it occurs to me now that it most definitely should be updated. So I’ll post my thoughts from 2010, at a ripe old age of 49, first and then add my more recent musings and additions with red ink. I hope you enjoy:
I don’t know about you, but I’m getting older. Last I checked, I was well into living my 50th year. Now, nobody has actually ever told me, “Julie, you are not likely to live to be 50,” but having not lived in a cave all of my life, I have received this message loud and clear. So what am I doing here?
Here, for example, are a few random things I hadn’t planned on:
1) Hot flashes and menopause: Isn’t it weird that every time I put on my therapy Vest, I have a hot flash? I don’t think they were designed with this in mind.
You know those people who say, “Oh don’t worry dear, those hot flashes won’t last long.” They are wrong. Dead wrong.
2) Wearing hand me down jeans that used to belong to my son: It’s true. My 12 year old son is now giving me his outgrown jeans…and they are too big. I’m trying to grow into them.
Still working on this…
3) Forgetting whether or not I have actually done pretty important things: Did I take that pill? Did I inhale Advair? ”Honey, did you see me inhale this?” This is truly frightening.
I still haven’t nail this down completely, but I believe I have figured out the pill issue. Each morning I poor every single pill and supplement that I must take throughout the day on the kitchen counter. If, at bedtime, there are remaining pills that I cannot identify, I use them as dog treats.
4) Wondering with fear and fascination what will happen if I actually outlive my disability payment: I don’t think the insurance company was expecting this either.
D-day on this one is in 12 1/2 years, and now I actually have faced the fact that I will probably be a bag lady. The good news is that, for some odd reason, I already have the grocery cart. Don’t ask. Only my son knows for sure why we have one in the back yard.
5) Not being able to see whether the needle is actually going to hit the tip of the Colistin vial: Are they making that bulls-eye smaller, or is it just me?
Hey, I am so good at this now that I can do it while vesting! This must be an example of Malcolm Gladwell’s 10,000 hours to mastery.
6) Getting so used to the ringing in my ears, that is seems like part of the radio background: Oh, the years and years of tobramycin….
I have a new game I play with this. I now have a “floater” in my left eye due to “peripheral viscous detachment” according to my eye doctor. It looks like a little hair with arms, one of which is holding a football (I have spent some time examining this). I see it when I close my eyes if I’m facing bright light and it moves when I move my eyeball. So now, for kicks, I play the “make the hair dance to the ringing” game when I’m bored. I’m going to create an app.
7) Routinely wondering if it is possible to lose one’s colon down the toilet: Ok, this is a bit graphic. I don’t know what the magic number of hours logged will be, but at some point, don’t you think gravity is going to win?
I’m still up on gravity, but barely. Nuff said.
8) Getting too “old” to run (read: low back and knee pains): I thought the lungs were supposed to go first.
This is what actually inspired the update to this post. Now I have an L5-S1 disk that is wandering around where it doesn’t belong, the result being nasty back pain. I didn’t really understand back pain before this. It’s amazing how it can bring one to one’s knees…literally. I now kneel down to cough. This draws some interesting reactions from others, I’ve noticed. This is especially true when I’m out shopping or walking the dog(s). Of course the dogs think it’s a game. Oh…I’m rambling now.
9) Making more cracking and moaning sounds getting out of bed in the am than my 16 yr old border collie as we hobble to the kitchen to make coffee.
Sadly, Cisco died two months after I originally wrote this. Now, I still make the noises and I know he’s hearing me from somewhere, smiling his Border Collie smile, waiting for me to hurry up and get there so I can throw him the frisbee.
10) Wondering if I might outlive yet another dog: I don’t know which to wish for.
Now Cookie is almost 12, and Wiley is 10. Both of them act like they are 3 when they see a cat, so I’m not worried yet. The others (yes there are more) are 9, 7 and 3. It is a lively barnyard and nobody is leaving it soon, including yours truly.
11) Living long enough that those foolish years of laying out in the sun on aluminum foil lathered in baby oil has resulted in my wrinkles having wrinkles: Who knew that shins could get wrinkled?
Let me tell you a little secret: The tops of your FEET can get wrinkles!
12) Needing a screening colonoscopy: Of course, if we wait long enough (see 7 above), we can probably just examine it directly:-)
Well, that happened. No, no, not THAT. I really don’t understand why they bother to make “lemon flavored” GoLytely. Like that could possible make it a pleasant experience?
And now for some brand new 2013 additions:
13) Teaching my son to drive. How can this be? He was just born.
14) This memory thing is getting to be annoying. After packing half the house for a three day weekend trip (most of it medical equipment), I just realized that I forgot to pack nebulizer cups. Kind of hard to do one’s treatment without those, don’t you think? Stupid people tricks like this are becoming more and more frequent.
15) Where did my ability to sleep anywhere, at any time go? I now resemble previous partners who were bothered to the point of insomnia by such little things as ticking watches, dripping faucets at the neighbors’ house, dog lip smacking. I could never understand this before. Now I get it. Electrons spinning piss me off.
16) Receiving invitations to join the AARP on a near weekly basis. This just blows my mind.
17) Having doctors that are literally half my age. This would be kind of cute, if they were Doogie Howser types, but they are not. I am old.
19) Living to see (and take part in) clinical trials of the first of probably a long line of drugs that will work together to correct the basic defect in cystic fibrosis. I really didn’t think I’d see this. But I am living it. Every day, I swallow these miracle pills morning and night, and I think of my sister, Kathy, and my brother, Tom, both stolen from this earth way too early by a horrible disease against which they didn’t have a fighting chance. I think about how lucky I am to have made it this far, and what they would want me to say and do on their behalf.
Here’s what I think they’d say: Yes, luck has something to do with it. For all of you out there who are really, really sick even though you have done everything in your power to stay healthy, don’t blame yourself. Blame this fu&%ing disease, and try as hard as you can to hang in there for a few more years. These meds might just stabilize you and allow you many more years than you think possible. But for those of you who are slacking–who don’t exercise or sleep enough or take ALL of your treatments or prescribed meds–don’t blame bad luck and sit around feeling sorry for yourselves. Victory is just around the corner and THIS IS NO TIME TO BE A SLOUCH.
Note to reader: Neither Kathy nor Tom would have yelled at you while living, however it appears that they have become quite adamant in the afterlife.
I’m currently reading a book called “The Slight Edge,” by Jeff Olson. The basic message is that significant change is made quite easily if taken one small and consistent step at a time. As a wellness coach, I have read quite a bit about change psychology, and the directness and simplicity of this author’s approach is very appealing to me. I’ve decided to take it on a test drive, and am trying to revive my blog with this approach. When I first started blogging, I loved doing it and felt like it was an awesome way to get my message(s) out about living well despite having ongoing and serious health concerns. Then, life got in the way, and blogging took a back seat to just about everything else that I could think of. Enter the Slight Edge. I will be posting more.
It seems to me that life is somewhat unfair in that good habits seem to require effort to develop, while bad habits form quite easily simply by being unconscious about choices we make. The Slight Edge basically refutes this, by making the very obvious point that over time, simply taking one small action each day will compound into huge and lasting change. On the other hand, not taking that one action will also compound. Unfortunately, compounding in this negative sense can be disastrous.
A very clear example for the cystic fibrosis peeps out there is doing your daily aerosol treatments. These are very easy to do (note that I didn’t say “convenient” or “pleasant”). Seriously…you just sit and inhale stuff. It’s not like you aren’t going to inhale anyway! And sitting in a chair holding a nebulizer is not exactly manual labor. So it’s easy to do treatments.
But it is also very easy to blow them off. There are a myriad of things that, in the moment, seem way more important than that hypertonic saline, right? Sleeping in, stopping for coffee before work, playing with your cat, browsing favorite websites, cleaning your closets, plucking your eyebrows…you name it. Who wants to sit and cough?
But now imagine what happens if that decision to blow off your treatments is compounded, day after day. Then compare that image to what it looks like if you make that simple decision to do the treatments every day. Stretch your imagination out to a month or two (here is where I wish you were a pathologist, because my mental image is a slide of healthy, pristine lung tissue vs. nastiness on a slide). Two very, very different images as a result of two sides of a decisional coin, compounded over time.
Of course, this relates to just about any area of life…not just medical treatments. Decisions about fitness habits, what you eat or drink, how you relate to people, how you work, and how you deal with stress all compound over time this way. On a day-to-day basis, it doesn’t matter in a huge way whether you take your daily walk or sit for your meditation. Not doing them ONE day is easy, and it won’t make a dent in your overall fitness or stress level. Alternately, actually doing these things probably aren’t going to matter a huge amount on that particular day. But compound these decisions over time and see what happens.
What one life-enhancing thing, something that is both very easy to do but also very easy to blow off, can you to do, today and every day? Gotta go do my saline now.
One of the drawbacks to not digesting nutrients very well is that people with CF are often small. Male or female, we tend to run on the petite side if we are pancreatic insufficient. With earlier diagnosis and better enzyme replacement therapy, this is slowly improving, of course. But for those of us who are already full grown, it can be a constant struggle to keep weight on. Not only do we want to maintain weight, it is often encouraged to have a few extra (I said, “a few”) pounds on board to stay strong and resilient to lung infections.
I don’t know about you, but when I need to gain weight—which is pretty much always—I would rather put on lean muscle tissue than fat. This is not just an aesthetic issue, either. The amount of lean body mass (LBM) you have (this includes everything but fat and water) correlates with disease severity. The less LBM a CF patient has, the more severe their disease tends to be. Additionally, LBM decreases with age, so as we get older it becomes more and more important to try to increase muscle mass.
So, what does it take to gain muscle? Three things, well…maybe four. If you are pancreatic sufficient, it takes doing three things, regularly. If not, it takes four (the fourth being, obviously, sufficient supplementation with pancreatic enzymes). This post is all about thing number one: Resistance Training.
First, you have to lift weights. Muscle tissue does not grow unless you impose a stress to it that it cannot handle. When you do that, the muscle adapts by healing and coming back bigger and stronger. In my opinion you should lift weights at least three times per week if you are serious about gaining muscle mass, and it is everyone’s opinion that you must lift heavy weights (for you). So ladies, forget about the purple Barbie weights. Soup cans will not work for long. Sure, you may have to start there, but within a couple of weeks, you will be strong enough that you will have to put some energy into finding heavier resistance. I realize most people are not training program junkies like me, and that you might not have a clue what to do with those heavy weights. One great resource is The New Rules of Lifting for Life, by Lou Schuler and Alwyn Cosgrove. You can probably find about a million training programs online, but the reason that I like this one is that it is scalable…you get to decide what level you begin at in each of the basic movements, and progress from that point. So, brand new lifters or old pros have something to gain from this book. I am also working on my own CF-specific training program, which will hopefully be available in a couple of months. Don’t wait for me though…get started now.
So, in summary, if you want or need to gain weight, do it in style—by adding muscle. There are three keys to doing this. First, find a weight lifting program that works for you, and commit to it for at least three months. If you do this, in addition to the two remaining steps outlined in the following posts, you will increase your lean body mass, and with it, your chances for a longer and healthier life. When you see the progress that you have made in the three months, I’m betting that you will be hooked for life.