What keeps you going?

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Today is a new day.  I feel better, and for that, I am extremely grateful (in addition to Theraflu and brandy).  While showering this morning, I was able to find the underlying message in my recent illness.

“We see what we look for and we miss much of
what we are not looking for even though it is
there…  Our experience of the world is heavily
influenced by where we place our attention.”
Stavros and Torres

How can we apply this to our quest of living well within the context of a chronic illness?

The challenge in writing about this topic is to not come off sounding like a rose-tinted fluff producer.  Believe me, I understand that a chronic disease brings with it significant struggle, frequent frustration, and unsettling uncertainty.  Sometimes, when someone tells me that I should “look for the positive” in a situation that seems unbearable, I get downright mad. “THERE IS NOTHING POSITIVE HERE,” I want to scream.  In fact, until the initial emotion is confronted and worked through, my visual field can include nothing positive about the situation.  I don’t believe I am alone regarding this.

So step one in looking for the “opportunity” in a health challenge must be confronting and understanding the grief, anger and fear that accompanies illness.  You can’t ignore or look past these valid emotions in order to get to the other side, where opportunity lies.

As I write this, my brother Tom lays in a hospice house in Omaha, Nebraska, where he will spend his last days and weeks before succumbing to cystic fibrosis.  I love my brother more than I can describe.  He has been a role model to me, an example of how a fighting, stubborn spirit can overcome lungs that have been failing him for over a decade.  He has been like the Eveready Bunny for over 10 years, refusing to stop and give up, despite pulmonary function numbers that would cause most people to roll over and die.  Instead, Tom has maintained a job, maintained friendships, and continued to amaze his healthcare team (and family) with his resiliency.

Now that my PICC is out, I am traveling to see Tom in a week, to say good-bye and to tell him how much I love him.  There are obviously a lot of emotions to work through here…I am very sad, and I am very afraid of what I will see when I walk into his room.  But there is absolutely no way of ceasing this opportunity to say good-bye without acknowledging and facing my own fear of looking at Death by CF. I have been letting this fear get in the way of getting close to Tom for years…just as I let it keep me from Kathy when she was ill.  It is the same fear that made me cover my ears and go to the far reaches of the house when I was a young child, and Tom or Kathy was doing a treatment and coughing their brains out.  I have been missing the opportunity of knowing my brother better, because I have let my own fear and sadness cover my heart. This has been a great example of how to not find opportunity in a bad situation…until now.

Fortunately, I see now that the reward of knowing and loving my brother will come with facing this fear, not avoiding it.

Similarly, the reward and opportunity found in any health challenge can only come after living with and through the emotion that accompanies it.

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Because I have CF, and a significant number of readers of this blog have CF, I have list CF-specific reasons first.  Multiple reasons that apply to the general population (incuding people with CF) follow.

• When you don’t use your lungs, and I mean really deeply breathe to the point where you might get some odd looks because of your cough, you won’t be as successful in getting the crud out of your airways.  It just helps.  Exercise is heavily advocated in European countries and Canada and is being increasingly so here in the United States.  In 2005, in a paper entitled “Standards of care for patients with cystic fibrosis: a European consensus,” (Kerem, et al; Journal of Cystic Fibrosis 4 (2005) 7 – 26), exercise promotion is specifically listed along with airway clearance, inhalation therapy, and education as specific roles for the CF center physiotherapist.   Supervised in-patient physical exercise is also required for hospital stays (with additional oxygen if needed).  Many centers also mandate  annual exercise testing.  These are standards of care, i.e. they are not optional.  As you probably know the European CF Centers have quite a good track record.  The US CF centers are catching on, and most recommend exercising regularly.  However, the insistence that this is a routine part of CF care is generally lacking here.  This will change.

• While some things, like better lung clearance with exercise, have not been experimentally validated beyond question (it just makes sense), other very important parameters have.  Would you like to slow the decline of your lung function?  I would.  Studies have not all shown improvements in lung function with exercise, but they have consistently shown that regular aerobic exercise (HR of 150 BPM for 20 minutes, 3 times/week) significantly slowed the rate of decline of lung function (Journal of Cystic Fibrosis 4 (2005) 7 – 26).

• Regular cardiovascular exercise increases functional capacity.  This means we can do more with less energy.  Maybe some of you have experienced days when energy isn’t exactly abundant?  This is when increase functional capacity comes in handy.

• A regular exercise program including aerobic exercise diminishes the sensation of air hunger.  Many studies have shown this, both in CF and other types of COPD.  Air hunger sucks.

• Exercise improves appetite.  Therefore, you will eat more.  Therefore, it will be easier to keep weight on.

• Hundreds of studies have shown that exercise improves quality of life, in all people, including those with CF.

• NOT EXERCISING IS A DEPRESSANT! Do you really need something else to bum you out?

• Exercise improves bowel function.  Enough said.

• Weight lifting (resistance) exercise builds muscle mass.  This is true if you are a preadolescent.  This is true if you are 95 years old.  This is true even if your CFTR is messed up.  I know this from my fitness training and from personal experience.  This is ONE very visible aspect of your body that you have a say about!   It’s nice to be normal that way.  Try it!

• Exercise (especially strengthening the back and stretching the front of the torso) will improve posture.  Improved posture can increase the amount of lung volume available for breathing.  This is significant.  You can also reduce back pain.

• Once you get past any initial distress (if you aren’t used to moving), exercising actually feels good!

There are probably more.  These are off the top of my head.  If you can think of more, chime in and add a comment.

Some Other Articles You May Enjoy

The first easy step is to find out why you want to be fit!  How simple.  You don’t even need running shoes for this one.  Take out a sheet of paper and list as many ways  you can come up with to answer the following:
“I want to be fit because…..”
Aim for at least 20 reasons.  If you can’t think of 20, go back to number one, and ask yourself, “Why is that important to me?”  Then do the same for number 2, 3, 4…,
This is an important step, so although you may think it sounds stupid, don’t skip it.  Now scan down your list, and underline the things that matter most to you, not to your doctor, or your parents, or spouse, or friends…just to you.  This is the real list…the one you want to post on your bathroom mirror, or some similar spot where you are sure to see it every day.

The second easy step is to discover what you love to do for exercise.  This may occur as you remember what you loved as a kid playing outside for hours, or it may mean getting brave and trying a few new things.  It doesn’t have to be marathon running or swimming the English Channel.  It just has to be something where you move…and something where, when you want to, you can increase the intensity enough to get your heart rate up and breathe deeply.

The third easy step is to DO IT.  Every day.  Start small…maybe just 5-10 minutes.  But commit to doing something every day (unless you are sick, of course).
I heard a great mantra about this somewhere:

Stand up.  Take a step.  Repeat.

Some days, you may not feel motivated!  Surprise, surprise.  But that happens to everyone.  Don’t let it stop you!  Look at your list from #1, then tell yourself to go out and do a little bit.  Sometimes when I do that, I end up having the best workout ever.

There is no good reason not to do this.  There are so many reasons to do this, that I will make it a separate post.

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The “D” in my acronym stands for “Discover Your Strengths and Use Them Every Day.”  First, I want to describe why this is important when it comes to happiness.  Then I will show you how to discover your strengths the high tech way (an online resource).  Of course, you could just ask you mother.  Then I’m going to describe a project I am designing for this blog that allows me to use my strengths as an example of putting this “rule” into action.

It used to be that to “improve ourselves,” we were to work on our weaknesses. However, new research shows that living and working from our unique strengths rather than paying attention to deficits creates lasting personal happiness and allows for peak performance. When we identify and further develop our unique talents and character strengths, we contribute more effectively and enjoy the process more.

It makes sense, really.  Imagine that you are doing something that you are really good at, working towards a goal that you strongly believe is important.  In fact, go ahead and close your eyes and remember such a time.  Remember the feeling of mastery and  flow you might have felt during the activity, and the sense of accomplishment when you were finished.

Now remember the last time you struggled to do something that was beyond your skill level.  It was likely something that you were not innately good at, and likely caused great frustration and a feeling of inadequacy.

Clearly, the first situation leads to positive emotion; the latter, not so much.

What are your strengths?  You probably have a good idea without a scientifically designed questionnaire.  But, if you take it, you might be surprised.  I know I was.

In his book, Authentic Happiness, Martin Seligman describes how he and his colleagues came up with the Values In Action (VIA) classification of character strengths. There are 24 character strengths each describing a specific aspect of positive human character. The strengths are grouped into six categories termed virtues. These virtues have been determined cherished among most religious and philosophical traditions.  Collectively, they are said to capture the notion of good character.  The characteristics of character strengths are:

•    They are moral traits and can be developed and strengthened by choice.
•    They are valued for themselves rather than as a means to an end.
•    Using them elevates rather than diminishes others.
•    They are ubiquitous.

Last week, I was admitted to the hospital to get a central line placed for a course of home IV antibiotics. I was in for two days…not bad, really. The only reason I had to be admitted was because in order to get it put in as an outpatient, I would have had to wait two weeks. Not good when you need antibiotics. The experience was SO different from the one I had last winter because I actually didn’t feel sick this time My PFT’s were significantly down though, and it seemed like a good thing to do. In fact, it was kind of comical. Below are some of my observations, which I had been diligently jotting down:

First, if you really want to confuse nurses, go into the hospital relatively healthy. Bless their hearts, the poor things don’t know what to do with you! I was bopping around the nurses station, asking if I could go find a coke machine my first afternoon, and the look of pure incredulity I received was priceless. I couldn’t help it…I had asked for a coke at 2:00, and by 4:30, I was getting really thirsty! They told me that “my doctor didn’t write an order that would allow me to ambulate” (I so love that word). I told them, “Well, I’m a doctor. Can I write the order? Clearly, I am capable of walking…even without an order.” They weren’t amused, but they did go raid the staff refrigerator and get a coke for me.

When the fifth year medical student from Stanford came in, I was in a feisty mood, so I didn’t tell him that I was a doctor at first. He was taking the usual exhaustive history that you take when you are on the wards for the first couple of years. A typical dialogue is below. I have changed the name of the med student because he was very nice and I liked him…green as he was…to “Doogy Howser” because I swear he was the spitting image. It goes like this:

Doogy, ascertaining the chief complain (cc): “So, tell me why you’re here?”
Me: “I have CF.”
Doogy, digging deeper: “Well, tell me how your last couple of days have gone?”
Me: “Pretty well. I went running this morning.”
Doogy, confused: So…why do you need antibiotics?”
Me: “My doctor said so.” And on it went for awhile. Then I felt bad, and started to be nicer, answering all of his questions with a smile. He got back at me though, I found out the next morning when the nurse came in with my meds.
First, she tried to give me a shot of sub-cutaneous heparin. I said, a bit bewildered, “I don’t need that.” I’m not sure anyone has turned her down before. She looked sad.
It turns out that if you are in the hospital, they assume you are bed-ridden (imagine that) and need to be guarded against blood clots. She apparently hadn’t seen me do my yoga routine earlier.
Then came the stool softener and the Prilosec. If you even get close to a hospital, you get a stool softener and a Prilosec. Try it. Drive by, and see what happens.

When the PICC nurse couldn’t get the line in the next morning, I had to go to interventional radiology. This was quite a treat, because they have very cool imaging in radiology that you get to watch…in real time. So, after I got over the humiliation of riding in a wheelchair (the RULE…there are a lot of RULES), when I could have taken the stairs at a run, and beat the transport person taking the elevator, I hopped up on the table and asked if I could watch the line snake its way from my elbow to my heart. That was definitely the highlight of the visit for me.

The weird thing was, after the line was placed successfully, I had to wait to show them that I knew how to give myself the antibiotic. Now this RULE was really annoying, but humorous nonetheless. I’ve probably given myself IV infusions 600-700 times (rough estimate) but I had to prove my prowess.

Finally, at about 5:30, I was informed that my meds had been delivered from the central pharmacy, but I had to wait while they changed the labels…don’t even ask…another RULE. Then the call came, the drugs were ready. Do you think I got to go get them and leave? Nope…had to wait for transport again. This time, I drew the line. I walked to the pharmacy, next to transport. We had a nice chat.

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