I have a pet peeve. It is the word “compliance.”
This word is thrown around quite a bit in CF circles, especially among medical professionals. It is used frequently in research papers, where there is an understanding of what it means. Physicians and other researchers are very concerned that people with CF don’t always do everything that they are told to do to keep their disease and all of its various manifestations at bay. If someone fails to do all required treatments or take all medications or exercise daily, they are coined “non-compliant.” Did I say that I hate that word?
Just do me a favor and check out your friendly thesaurus to find other words that mean the same thing. Never mind, I’ll help you out. Here are a few: docile, easy, manageable, meek, submissive, yielding. In other words, spineless, with no worthwhile opinion on the matter. Now in the olden days, when Doctors were GOD (which is why I capitalized doctor), it was just assumed that one followed one’s doctor’s orders, no questions asked. But times have changed, and if you don’t believe me, turn on your TV and count how many different pharmaceuticals tell you, the patient, to “ask your doctor if this could be right for you.” Like it or not, patients are a very important part of the equation now. This is a good thing (not the television commercial part…that is a very crazy and ridiculous thing).
I’m not harping on CF doctors. I actually think most realize that the patient has very important information, like how much it is really possible for them to do in a given 24 hour period. So why can’t we drop the word?
I have an alternative. How about instead of the word compliance, we use “consistent.” How consistent someone is with their thrice daily aerosols, or 250 pills to swallow, or blood glucose monitoring, or airway clearance technique of choice, or exercise, or any of the myriad other things we must do daily, sounds SO much better than “compliant.” There is no judgement in the word consistent. It implies that we are all trying hard, but sometimes life gets in the way. Check out some of the synonyms of my substitute word: dependable, persistent, rational, steady, true, regular. I like dependable and steady so much more than meek and submissive, don’t you?
What say you, CF peeps?
I recently heard Carol Dweck, a research psychologist at Stanford, give a talk about her book, Mindset: The New Psychology of Success, and the number of “ah ha” moments I had prompted me to immediately order the book. Dweck’s research interest is in motivation and what makes people succeed. She has developed a fascinating theory that compares what she terms a “fixed” mindset to a “growth” mindset. As you might guess, having a growth mindset is a good idea, and I’ve begun to wonder how this theory might apply to living with a health challenge such as CF.
First, some definitions: A fixed mindset is when people believe that their basic qualities such as talent, intelligence and other abilities are fixed; that they are born with them and they essentially do not change over a lifetime. Alternately, a growth mindset is the belief that these basic qualities can change over the years given diligent attention, practice, mentorship, etc. One way to tell if a person lives from mainly a growth mindset vs. a fixed one is to explore what drives them to success (or not).
What drives someone with a fixed mindset is fear. They have been told all their lives that they are “smart” or “musical” or “artistic” or a “natural leader,” and they are mortally afraid that if they mess up, this suddenly means they are stupid, or not talented after all. They fear mistakes, and the result is they won’t do what it takes to grow, and learn more. The focus is on the outcome, on looking brilliant and not letting people see anything that belies their perfect reputation. It sounds stressful, if you ask me. What drives the individual with a growth mindset is challenge. They enjoy the process of doing something, anything, because the possibility exists that they might improve or learn something new. Mistakes are seen as part of the process, an important step in learning, and not as failure.
Much of Dweck’s research has focused on children and what happens when children are praised for abilities or talent vs. being praised for diligent work and resilience…the process of how a child learns and achieves as opposed to the end results. Surprisingly, children who are consistently praised and told they are smart or talented at this or that develop fixed mindsets. They begin to worry about doing the next thing, afraid they won’t perform up to standards set for them. They don’t want to take on hard jobs, finding it less stressful to just do what they are good at. They don’t take risks. They get defensive when they make mistakes, and may blame others.
But children who are praised for their effort and told that they worked hard which is a great thing, learn that the working hard is what is important. They develop a growth mindset, and are excited to take on new challenges. They are not afraid of making a mistake. They aren’t defined by their talents, nor do they believe that talents and intelligence can’t be improved upon with hard work.
The first thing I thought when I read this is, “Oh man, did I mess my kids up?” The next thing was, “Yup, that was me growing up. That ‘A’ made me happy for about 2 nanoseconds before I was worrying about how to get the next one.” Fortunately, a growth mindset can be fostered at any time in life, as we’ll see below.
All of this musing eventually led me to consider how mindset might affect one’s health. For example, let’s say a young child is born with cystic fibrosis, and told by parents and doctors that they are sick, and need to do x, y, and z just to stay alive. Of course, the kid does need to learn that it is important to do treatments, exercise, eat right, and do the myriad of things necessary to stay healthy and it would be appropriate to praise the child for doing these things regularly. But this is praising action, praising the hard work required to stay healthy. What wouldn’t be such a good thing would be to praise the kid for being healthy…because then as soon as she is not healthy, she has failed.
Now, I don’t really think parents and doctors routinely say “you are sick and are going to die if you don’t do this” to small children and parents of kids with CF (at least I hope not). And I think most parents know to praise their kids for taking care of themselves. Where mindset becomes more relevant to us is during adolescence and young adulthood (and even “old” adulthood these days). A teen or young adult who has fully assumed all responsibility for health maintenance might very well suffer if he/she has a fixed mindset around health. And let’s face it, when you continue to get sick, even though you do everything you can to stay healthy, it’s easy to develop the attitude that “CF is going to kill me, no matter what I do.” Then it’s easy to start saying, “screw it, what is the point?” and start to slip in health maintenance activities.
Decisions about the future can definitely be affected by such a mindset. This can go both ways. Someone might have an “I’m going to die anyway,” and make really stupid, risky decisions like taking up smoking or becoming a firefighter. Someone else might be so afraid of getting sick that they won’t try anything that stretches their routine. It’s tricky to develop a growth mindset when you have CF, but I know many people who have done it. I’ll list the steps according to Dr. Dweck’s website, and then give some examples of how I’ve seen this work.
Learn to hear your fixed mindset “voice”
Here’s what mine has said to me twenty-eight years ago: “Your sister, Kathy, died when she was thirty-one. You are now 24. Why are you wasting the last seven years of your life in medical school and residency”? This one was a doozy and nearly caused me to quit medical school. Figuring out where your mindset might be fixed and limiting you is not as simple as it sounds, especially when you live with CF. It isn’t “fixed” in a negative way if you are cautious about doing things that might be a risk to your health. Yet it is not a good idea to think, “I’ll never be able to exercise, because I’ve never found anything that I like or am comfortable doing.” That is fixed. That is not even open to trying. Remember, if you can breathe, you can exercise.
Recognize that you have a choice
When Ana Stenzel was training for the Seattle half-marathon in 2006, she began to develop shortness of breath, only to discover that she was starting to reject her first set of lungs transplanted years before. I can’t even begin to fathom the emotions she must have felt, knowing that this was chronic rejection which could not be remedied. At the time of the race, she was extremely symptomatic, and there was no way she could jog any part of it (our original plan was to walk/jog the race). Any person in her shoes would have been completely justified to say, “not this time, I will watch and cheer Isa on.” But Ana recognized that she had a choice. She could modify her original expectations, and walk the 13.1 miles. She didn’t have to run any of it. So she did just that, and got to experience the thrill of being in a half-marathon. The time didn’t matter. The method didn’t matter. It was the experience that she decided was important to her, and she was going to have it, rejection be damned. You always have a choice about how you frame a situation to yourself.
Talk back to it with a growth mindset voice
My friend E’s (I’ll keep her anonymous since she didn’t give me permission to use her name) lungs were failing. She had a horrible year with infection after infection and was in the hospital more than out of it. She began to need to use supplemental oxygen, and was very self-conscious about using it outside her house at first. I don’t know the inner workings of her mind, but I would venture to guess her “fixed” mindset might have said to go out and be seen with an O2 tank is admitting failure. The “fixed” voice might have whispered to her that O2 meant CF had won the battle, and she was on an inevitable downslide. To go out in public was to verify that as the truth. But she must have talked back to that voice. As she realized that she could do so much more with the aid of oxygen, she wore it to walk with, both on her treadmill at home, and around the neighborhood. Her inner dialogue might have sounded like this:
(fixed) “You can’t let them see you like this.”
(growth) “I need to walk. I need to get stronger. Even if I need a transplant, I have to be strong for that.”
(fixed) “But this means CF has won.”
(growth) “Shut up. CF is not winning. I am getting stronger despite crappy lungs right now, and that requires oxygen. I am not quitting.”
Talk back. A voice is just a voice. Just because you think it doesn’t make it true.
Take the growth mindset action
After you practice steps 1 through 3 above, this part will come naturally. As you begin to recognize your fixed ideas about your health and what it means to have CF, you can practice seeing things from a growth viewpoint. I reflected on my irrationally emotional decision to quit medical school, and took the growth pathway to going back for a semester just to see if things got better. They did.
Ana chose the experience of the half-marathon over worrying about time or mode of travel. She finished, and went on to a live well through a second transplant, a book and a documentary, a job as a genetic counselor, and gave immeasurable gifts of love and presence to the CF and transplant communities for many, many years.
E chose to listen to her growth voice. She stayed positive and exercised as she waited for her phone to ring with the news that her new lungs were waiting for her. Now that she has her new lungs, I’m guessing her growth voice is screaming at her with excitement as she gets stronger and stronger.
As you practice listening for it, the growth mindset voice becomes loud and clear. Ignoring it will become…uncomfortable. You might still stay in fixed mode at times, but you will know that there is another choice.
I know…it’s not a word. But it should be. Especially if you have CF and you deal with the ups and downs of exacerbations followed by hospitalizations and the frustrating loss of all of your hard-earned fitness gains, there needs to be a unique word to describe what enables you to keep on plugging away at the goal to be fit. I call it “mojovation.” I define it as the desire to get your mojo back.
I know you can relate to the following: There you are lying in your hospital bed, all packed up and ready to go home, waiting the inevitable extra hour or two for some random event to happen before you can leave (a wheelchair that you don’t need but is mandated by the hospital gods, your discharge meds that somehow ended up on the wrong floor, a nurse who needs to come in and “teach” you how to administer you IV’s even though you are 10,000 times more qualified than she is to teach this shit, etc), bored to tears wondering what to do? I have a great idea. This is the time for building your mojovation.
Face it, you lost your mojo as soon as you had to put the gown on backwards. After a day or two of lying flat on your back, your quads probably started shaking when you got up to pee, even though you squated 180 lbs the week before you got sick. You have likely lost five pounds of muscle in a fraction of the time it took to accumulate it, and your skin has taken on the color of hospital eggshell white. You want to smash the tiny mirror above the tiny sink in the tiny bathroom and scream at the unfairness of it all, but you know this would result in further delay of your discharge as you would then have to wait for the psych consult. I say, harness this anger and grab a pen and paper…or your iphone if you are younger than 40 years of age and have forgotten how to use a pen. Your mojo is not gone forever…you just need to locate it.
I learned the following exercise from Dr. Heidi Grant Halvorson, a social psychologist who researches, writes, and speaks about the science of motivation. Since we are speaking of regaining your fitness mojo temporarily lost in Tropical Storm CF, I’ll use a related goal in my example using Dr. Halvorson’s techniques. The first thing to do is write down your goal. Make it specific and make sure it is something that you not only really WANT to achieve, but also something that you are confident you CAN achieve. Then ask yourself, “how will I know when I have reached this goal?” If you don’t know, go back and work on it until you can answer this question. Assume, for example, that my goad is “I want to squat 180 lbs again.” This is specific…I will know when I’ve done it (ouch). I both want to do it (to prove I am bigger and badder than CF) and know that I can do it (I already have).
Now that the goal is defined, Halvorson suggests doing something called “mental contrasting.” I list 4 reasons this goal is important to me, in order of magnitude of importance. Then, I’m to write 4 obstacles, again in order of their obstacle-ness. New word. The hardest obstacle to overcome is number one, next hardest number two, etc. This is easy enough. Then I write a paragraph expanding on the number one reason this goal is important. I go for it and just write whatever comes to mind. Next, I do the same thing for obstacle number one. Then, again I write about reason to do this goal number two, followed by obstacle number two. So, four paragraphs in total. I can stop here. According to the research, this exercise makes my brain able to hold two ideas at once! Who knew? I am able to face an obstacle squarely when it arises, but still retain that little voice telling me why my goal is important and not run and hide at the first indication that life is not always a piece of cake.
The next idea is the gem and really the best part of this whole article. There is a very simple planning task that, if you do, increases your chance of reaching your goal (assuming it is a goal that you really want and one that is achievable) by 150%, according to numerous research studies. It is so simple that when you read it, you will say, “no way that is going to work.” I know, that is what I said too. But the fact that I am actually writing this is proof that it works! The exercise is called “if/then” planning. Very simply, I come up with the time and place I plan on accomplishing the task I want to achieve, and write it down. That’s it. My first attempt at this was very small–and I suggest you do the same thing. I decided that “when (you can substitute when for if) the coffee is brewing, then I will do my morning stretching.” Morning stretching is something I know works well for me, but I often forget…or am too lazy… to do. My if/then plan worked like a charm on this first test drive. I was successful every day for a week, seemingly without any effort on my part. It just happened.
Next, I tried, “when I drink my first cup of coffee, I will write in my journal.” Again, it worked like a charm. Magic. In the past, my journaling efforts have gone roughly the same as my old Buick Skylark, which tended to die every time I turned left. Suddenly, I now automatically sit down with my Bulletproof coffee and write away.
My current if/then strategy is, “if I am Vesting, I will also be writing something in my blog.” Oddly, this works in the morning (now), but I am having trouble with it at night. So, this will be the topic of my next blog post…willpower, use it and/or lose it.
So now, back to the exercise goal you want to create while you are waiting to rolling out of the hospital. First, try the mental contrasting writing exercise about why you want to regain your lost fitness, and what obstacles you will need to overcome. Then, use the magic if/then technique. Remember to start very small…test the waters a bit. Take a tiny baby step in the direction incredible Superman/woman fitness levels. Something like, “when I wake up in the morning, I will do ten pushups,” is a great example. Remember, make it very easy! Then, after it becomes automatic, add something that is a bit harder…just a tiny bit. These little steps build confidence in yourself, which remember is very important when it comes to setting and achieving goals.
Give it a try, and let me know how it works for you!
I have a tad bit of trepidation writing this post. The last thing I want to do is tell people with CF to take it easy when it comes to exercise, but this is indeed what I am about to do. It may be a controversial topic…and that’s ok.
Despite being a nerd who never did anything but read as a young girl, the last thirty-eight years of my life have been marked by a pronounced exercise addiction. As such, both good and not-so-good things have occurred. The good is clear: Somehow, I’ve beaten back the CF monster time and time again, and I honestly believe that my fitness level has been a huge contributor to this bit of good fortune. It’s been known since the early days of CF research that fitness level corresponds very well with survival in CF (Nixon, 1992). I certainly didn’t know anything about this at the time I started running in order to be the skinniest girl in my high school class (thank God I didn’t win that competition), but the consequent addiction to fitness has certainly paid off. The need to be skinny turned into the need to be in control (thank you weight-lifting), which morphed into the need to combat stress (thank you medical school), which then turned into the need to get out of the house (thank you two toddlers). It wasn’t until my CF began to really let it’s presence be known to me in more serious ways that exercise became my need to (literally) run away from reality.
It was only when out for a run, or when strutting around in the gym looking (and actually being) strong that I forgot about those pesky malfunctioning genes that took my sister and brother’s lives, and would likely take mine. Taking on fitness challenges and training for them was a way to beat CF, and forget about it at the same time. This is how I coped, and it worked really well.
Until it didn’t. The wake up call for me was last spring, when I lost my mind and decided to train for, and pass the RKC. You can read about that little escapade here. So, at 50, I proved that I could train myself so hard that I could end up in the hospital with pneumonia. Sure, it was a great experience (the RKC, not the pneumonia…that sucked), it was very good for my ego, and I think I even surprised a few people, but was it really worth the blow to my immune system, the chronically elevated cortisol levels, and the resulting scars in my lung tissue which are permanent?
Here is my point. If you have CF, exercise. Heck, if you don’t have CF exercise. That is what our bodies need…what we are made to do. Everyone is healthier when they move frequently. But overdoing it is not a good idea. Over-training is a serious stressor to the body. It causes hormonal chaos, as the body thinks the stress is never going to stop and keeps on pumping out cortisol like crazy. Cortisol is the body’s version of a drug we commonly have to take to dampen inflammation in the lungs, prednisone. Remember the last time you had to take prednisone? The shaky feeling? The mood swings? The elevated blood sugar? The yeast infections? Elevated cortisol over a long period can lead to these things and worse . It not only turns down the inflammatory response in the lungs, but it also turns down the immune response to infections, resulting in….trips to the hospital with pneumonia.
So what is a cyster (or fibro) to do? Moderate. It is the best course of action. Here is how I do it now (at age 51). I walk every day, at least 30 minutes, usually more like 60 minutes. This is at a moderate pace, and is usually a pretty low key event. My heart rate is never more than 50-60% of my maximum (although this is a guess since I never take it). There is a little bit of an upper body workout component as I am always accompanied by two dogs, one of which almost outweighs me, is horribly leash-trained, and constantly looking for squirrels.
Three days a week, I pick things up and put them back down (weight lifting). This consists of a heavy day, a medium day, and a light day each week. The “heavy” day means heavy (for me) weights, which means fewer reps. This day usually consists of deadlifts and bench presses, with some ab work thrown in for good measure. The “medium” day means not heavy, but not too light weights. It’s a Goldilocks day. The exercises are usually squats, military presses and rows, and the rep range is 8-10. I may “play” with kettlebell exercises this day–but nothing hard. The “light” day is just that–light. I go back to deadlifts, but just practice form, and work on my pull ups. This is the day I will “practice” my kettlebell favorites, like the Turkish Get Up or the snatch. Again, the focus is on practicing and playing. Currently, my weight workouts are limited to 45 minutes. I’m trying to get them down to 30 minutes, but this is tough for me, because I always think of “just one more thing” I want to do.
I can hear you now. “What about cardio?” I know, I know. Running has saved me from the CF beast. I can’t give it up…the beast might get me.
I’ve been experimenting with limiting my “run” days to two a week at the most. And they are not runs anymore. They are interval workouts, where I either run fast (I would say sprint, but that’s sort of stretching it) for short periods (15-30 seconds) and walk to recover, repeating for as long as it feels right, OR I walk uphill fast wearing a 20 lb weighted vest, and then slow way down (and decrease the incline) to recover, again repeating the work:rest intervals for as long as seems right. Because interval training is hard, these are short workouts; 20 minutes maximum.
So, let’s think about this: walks daily…at such an easy pace they don’t really count. Weight lifting 3/week at 30 minutes (that’s the goal anyway). Interval training 2/week at 20 minutes. Not much time, right? Now trust me, in order to get the work done, and make it worth your time, those short workouts have to be pretty fast pace and intense (except the easy weight lifting day…don’t even consider “intense”). This is what I’ve been doing this year. And guess what? I’m going on seven months with no infections and no IV’s. My weight is up. My mood is up. My numbers are up. Life is good. Compared to the times in the past when I’ve been working out like crazy, one to two hours-a-day, this is a much more sane, and healthy (I think) approach to fitness.
Here’s my final point: This isn’t a lot of time. So the next time you try to convince yourself that you don’t have time to exercise because you are so overwhelmed by the CF regimen, ask yourself if you have 20-30 minutes. That’s not even a sit-com!
Lastly, an important caveat: If you are just starting to exercise, or just coming back to exercise after being sick, start with the daily walks. Get those down first, building up an aerobic base. Next, add the lifting. When you feel strong again, start in with the intervals. At first, intervals may look like this: 30 sec walk fast, 1:00 walk normally. Then maybe build up to a jog for the work intervals…then a run…then a sprint….then a sprint uphill (ok so maybe this won’t happen until the Magic Pills are approved). Go VERTEX!
In a previous post I discussed my version of the Perfect Workout, which consisted of eight steps. The first step is to deal with soft tissue abnormalities that lead to pain and/or poor movement patterns. Here, I discuss this further.
Unless you are a newborn, when you walk into a gym — quite a feat for a newborn — you are going to have some muscular tightness…some tension or “knots” in muscles that occur from chronic movement patterns that are less than ideal. We all have less than ideal movement patterns. This is not a judgment…it’s just a fact.
Those of us with chronic coughs especially develop tightness and tension in the thoracic spine, and neck. Those who sit at work or at home at a computer for many hours a day can also develop muscular tension in the neck and back, as well as tightness in hip flexor muscles and hamstrings. A good way to think about this is that over a long time sitting in a chair, your body tends to become “chair-shaped,” i.e. short and tight hamstrings and hips. If that’s not scary enough to imagine (a chair-body), the ugly truth is that muscles don’t live in isolation from their neighbor muscles. The entire soft tissue system (muscles, ligament, tendons and fascia) is all interconnected. So a tight, knotted muscle in one area very definitely affects muscles, tendons, etc. both upstream and downstream from it.
This is why a knot in the middle of your back can cause pain all the way up into the back of your head. Or in my case, this explains why spending a few minutes rolling the bottom of my foot around on a lacrosse ball can help me loosen up my ankles and calves.
So why do we care? We care because it isn’t just that pain in one area leads to pain in another, but muscular weakness (resulting from those painful knotted tissues) leads to imbalance and weakness elsewhere, which leads to improper movement. Somebody famous once said, “The body does what it does perfectly.” So if the body moves imperfectly, it then perfectly continues to move imperfectly. And if we, for instance, go for a walk or add resistance to imperfect movement, we solidify that pattern in our brains, and become nicely set up for injury…and more pain!
So what’s a (tight and knotted up) body to do? Well, before asking the body to work, it is nice to do whatever you can to lengthen and unknot the muscles that need attention. This does not have to be a long process, and you don’t need to spend 30 minutes on your foam roller, thus using up your workout time allotment.
I have three favorite tools that I use for this purpose. First, the aforementioned lacrosse ball is a must for my feet, and occasionally for very tight knots in my back. If a lacrosse ball is too hard (and you will definitely know this), you can start with a tennis ball and move to a harder ball as your tissue gets more pliable and your nerve endings get used to the process. For my feet, I simply stand up and put one foot on top of the ball and roll it around. You will automatically gage how much weight to put on the rolling foot (by how much pain you can tolerate). When I started this process, I could barely tolerate any pressure—I have very tight feet. But I persisted, 5 minutes every day. After a couple of weeks, I didn’t mind it at all. Now this actually feels good. I don’t usually do this at the gym. Instead, I have found that the easiest time to do it is when I do my treatment every morning. It’s like giving myself a foot massage! I also keep a lacrosse ball in the bathroom. You figure it out.
The second tool I use is the foam roller. You’ve probably seen these around. Most are about six inches in diameter and about three feet long. They are made of Styrofoam, and have lived in the gym scene for years now as a favorite instrument of torture. I say this because they are used for “self-myofascial release,” a process that is slightly uncomfortable, especially when it is really needed. I roll my calves, hamstrings, gluteals, and if I’m really feeling masochistic, my quadriceps over such a roller. You will know what you need to roll by how painful it is. The more it hurts, the more you need it. You simply modify the move to a tolerable level of pain by taking some of the weight off the body part being rolled. I generally spend five minutes or so rolling as the very first part of my workout.
Tool number three is a very expensive, intricate and complicated instrument. Kidding. It’s called a “peanut,” and is comprised of two tennis balls duct taped together to form a peanut-shaped duo. This handy little tool sets my thoracic spine back to where it’s supposed to live every single day. The maneuver is simply to place the peanut on the floor under your lower ribcage, and lay back on it so that the groove in the peanut is directly under your spine. This places each ball of the peanut perfectly under the bundle of muscles that lie adjacent to your spinal column. You simply roll back and forth on the peanut several times in the position, then move it up the spine about an inch and repeat. Moving this way all the way up to the level of the big protuberant bone at the bottom of your neck takes only a couple of minutes, and is one of the best things you can do for knots along the spine as well as mobility of the spine (to be discussed in a later post).
That’s it! Soft tissue rolled out…now it’s time to move on to mobility work.