There is good news and bad news about getting old with cystic fibrosis. The good news is that I am getting old with CF! How great is that? Although it is happening to more and more people as medical care gets better and the median age of survival creeps upward, it still surprises me every time I have a birthday. I laugh at my wrinkles, chuckle at hot flashes, and marvel at the fact that I look, well, middle aged.
Living with an unpredictable illness is not all mirth and laughter, though. Some aspects of getting older are a bit more frustrating, at least for me. This is where Tonic, a new iPhone/iPad app, enters my story. As you probably know, staying healthy with CF requires more and more effort with age. There are more medications to take, more treatments to do, more effort is required to stay fit, to eat well, to manage CFRD, to get enough sleep, enough water, to do whatever it takes to make the plumbing system work well, remember appointments for the doctors and port flushes, to do…pretty much everything. Yet, just as the “CF care complication” factor increases, the ability of the mind (mine, at least) to keep track of it all begins its downward descent. This is poor design, but it is what it is.
I noticed it first with Advair. I can never remember if I have taken it. I don’t know… I seem to have a mental block. The block then spread to enzymes, vitamins, children’s names, books I’ve read, etc. While it’s much cheaper to be able to read the same book (and be entertained) multiple times, too many shots of ProAir or too many Pancrelipase capsules can be problematic.
I have officially dubbed this past winter, “the winter from hell.” For some reason, I had three episodes of pneumonia with resulting rounds of home IV antibiotics over the span of eight months. If this wasn’t enough, I cultured MRSA recently, so each round of IV’s included three different medications, all through IV access. IV meds must be refrigerated of course, and when they come in Entermates (as two of mine did), they need to be removed from the refrigerator a few hours before being used. When you forget to do this, 1) brrrr, and, 2) the infusion takes forever. Not to mention that during exacerbations, I do three treatments per day, try to sleep, try to remember to eat (when I have no appetite), and take the usual oral meds, supplements, and vitamins. I also have follow up appointments with doctors and need to get to the lab for blood draws three times each week. Did I mention the port dressing changes? I literally needed a flow chart to traverse through my day, or I would forget an essential item. Of course, most people get admitted to the hospital for this rather intensive treatment time, where, at least in theory, they keep track of these things. Wink. But I hate hospitals, and only go in if it is absolutely mandatory.
Enter Tonic. As luck would have it, I was able to beta test Tonic this “winter from hell.” Tonic is an app that helps you to remember and track whatever you need to track. Setting up Tonic is a simple task. You simply make a list of all that you want to remember and track. It took me about 30 minutes because my list of “tonics” was enormous. When it was done, though, my trusty little iPad would bleep whenever I had to do something. Take out med (bleep). Infuse this (bleep). Take this (bleep). Eat (bleep). Weigh yourself (bleep). Eat more (bleep). Trust me, the thing was bleeping all day, every day of each exacerbation. But I was so completely on track! I missed nothing. Nor did I do or take anything more than I was supposed to, because you check off each “tonic” as you do or take it. This is a very satisfying property of Tonic for anal compulsive people who like checking things off lists (like me).
Second, remember that the idea is to make your life easier, not to add another chore to your day. When my life is so complicated that I really need help, I use Tonic. But other times (like now) when things are pretty good, I let Tonic fade somewhat into the background. It still reminds me, but I turn off the “bleep” alarm and don’t always check off all the activities or enter a lot of data. You will find your own balance.
In summary, Tonic is just what I needed at just the right time. I would recommend it to anyone, whether you have a complicated regimen like mine, or just want to track a few things. If you decide to give Tonic a try, let me give you two hints. First, use it for all of the things you do for your health. Everything. Really. Meds, sleep, exercise, nutrition, water intake, everything you can think of that you know you want to do to be at the top of your game. For instance, Tonic even reminds me to journal, to stretch my hamstring muscles, and to meditate.
You can find Tonic on the web at .
I was recently asked to list my top five to ten strategies for “thriving.” Given the body I inhabit, I picked ten. Here they are:
1) (I bet this is a unique top pick) GREAT DRUGS…legitimate ones, of course. I would literally be dead were it not for biotechnology and the pharmaceutical industry. Daily inhaled and oral medications keep me breathing and digesting with the best, and I am thankful for that every day. My willingness to accept the need for them, and to follow a diligent routine has to be my top strategy.
2) A sense of purpose. This has come to me late(r) in life, but is rapidly rising to the top of the list of things that keep me going. I now understand (I think) why my soul picked this particular body to reside in this time around. It was a mystery for awhile why I went to an elite medical school, only to retire after 5 years of practice. Then why, of all things, I became a certified personal trainer? And then, a wellness coach? Huh? I thought the idea was to go into medical research and somehow help to cure CF…
Now, every day I coach people like myself to incorporate exercise into their routines just as it is becoming a medical certainty that exercise is VERY important for people with CF. Because of my MD, I am asked to speak and write about this topic. I am passionate about the importance of exercise in keeping myself healthy, and have been told that I am a “beacon of light” for the CF community. Now that is a sense of purpose.
3) A sense of humor. One of my signature strengths is humor, and it is a good thing!
4) My two sons, who have revealed within me a depth of love and feeling I never would have known. They keep me going. They keep me attentive to caring for myself…because they need me. They keep me laughing…and screaming (it’s good for the lungs). They, amazingly, are capable of both warming every cell in my body and driving me crazy at the same time.
5) Connection with others. The love and support of my partner, my family and my friends, specifically, provides an immeasurable amount of fuel to keep me going when times are not so great.
6) Faith. This is a hard one to describe, as I am far from religious. My faith is centered on a felt sense of trust that I am connected to a greater whole, one that was there before I was born and that will be there when I am gone. When I am lucky and can let go of my brain for awhile (in meditation), I don’t feel separate from this greater whole at all. That keeps me going.
7) Movement! When I don’t exercise every single day, I feel like I am letting myself down. My dedication to pushing my body is what brings me to age 48 in pretty good shape (for someone with my genotype). Of this, I am certain. Certainly, I don’t do now what I did in my 20’s. But, as I’ve said countless times before: I ran until I had to jog. I jogged until I had to jog/walk (now). When I can’t do that anymore, I’ll walk fast. Then…I’ll just walk. If there comes a time when I can’t walk, , I’ll roll (but I’ll push myself!).
8) Sleep! I love to sleep, and sleep loves me. I don’t function well without 8 hours…at least. Sometimes I take 2 hour naps in the afternoon, and I refuse to feel bad about it. I know my body…it is worthless when it needs sleep. I acknowledge that it needs more sleep than the average body. When I lose sight of this, I remember the constant battle that takes place in my lungs, and then happily surrender. This probably should have gone up there after the drug thing.
9) The unending quantity of information on the web makes lifelong learning as easy as finding the on switch. Since ‘love of learning” is another SS, I’m never bored.
10) Dogs…I collect them (six today). I know…you are probably scratching your head, but if there is one thing that keeps me in the moment, it is a dog.
What keeps you going?
Is it Take or Bring?
I never know. But for purposes of my acronym, it has to be Take.
T is for: Take complete control of what you can, and take complete responsibility for each of your actions. In a word, be accountable to yourself, because if not you, then who?
When it comes to living with ongoing health challenges, it is very easy to surrender control––to doctors, to “experts,” to nurses, to your spouse, to family members who “know what is best for you,” to your horoscope, etc. The problem with this is that it leads to a “crisis in confidence,” as Margaret Moore et al discuss in their white paper entitled, The obesity epidemic: a confidence crisis calling for professional coaches (http://www.wellcoaches.com/images/whitepaper.pdf). A true crisis occurs when we let others control what happens to us. When we consistently let others decide for us, we gradually lose the belief that we have our own answers. Then we are in trouble.
Marty Seligman, the “father” of positive psychology, demonstrated the severity of what happens when control is not an option on some very unlucky dogs back in the late 1960’s. These poor creatures were first “taught” to become helpless (an unforeseen outcome of the experiment) as they were harnessed to another dog while receiving random, painful electrical shocks given simultaneously to both dogs. One dog in the pair had a lever it could press to end the shock. The dog without the lever would also receive the benefit of the shock ending, but this seemed as random as the shocks. To the second dog, pain was random and inescapable.
Subsequently, both dogs were placed in a box with a shallow board dividing it into two sides. When a shock was applied on one side of the box, the dog simply needed to hop over the divider to escape the pain. The dogs from the previous experiment that had been taught to press a lever to stop the pain found this option immediately. What do you think the dogs that had “learned” that pain was inescapable did? They simply lay down and accepted the pain. They didn’t even look for an escape! They had learned helplessness.
What do these poor dogs teach us?
We need to find where we do have control, any control, and cease it! You may not have control over your cancer returning after a remission; but if it does, you have control over how and if you want it treated. You have no control over how long you have to wait for an organ transplant, but you have complete control of what you will do while you wait. You may not have control over how bad your next flare of MS will be, but you do have control over how much rest you get as you wait for your health to stabilize.
What you take charge of can be small. It can be as simple as determining the time you will go to sleep. But it needs to be your sole responsibility. And you get to reap both the benefits AND the costs of whatever it is…
That brings me (or takes me…I don’t know) to responsibility, the other half of the “Take” strategy.
Taking responsibility for everything you do is really a corollary of “Take control of what you can” because if you take control, then by definition, you are responsible. Conversely, when you let someone else decide, you have no responsibility for the outcome. Good or bad, someone else made it happen. The good news is…it’s not “your fault” when something goes wrong. You get to blame someone else. The bad news is that when something goes well…how can you claim any credit? When your successes are not perceived as being brought upon by YOU, you don’t get to develop self-efficacy.
Self-efficacy is simply a person’s belief that they are capable of reaching a goal or achieving a certain level of performance. . Self-efficacy is huge in importance when it comes to happiness…so important that it will get its very own post someday soon. Guess what is the opposite of self-efficacy? Helplessness.
I read somewhere that E+R=O or, Event + Response= Outcome. I would give credit to whomever came up with it, if I could remember, but such is the state of my hippocampus. Anyway, I like it. It’s very clear, and obviously true. If we think of our illness as the Event, and our overall Wellbeing and Happiness as the Outcome, then R (response) is clearly quite important, right? R is about taking control, and taking responsibility.