Why I Hate CF

I decided today that this Boot Camp posting thing has to be postponed, for now. I know when I am avoiding writing because I don’t want to face my blog that I need to change subjects.  Perhaps this is because I don’t feel like writing about how to “come back” from being sick in the midst of being sick.  Instead, I feel like ranting.  So here goes:

I’m in a bad mood.  I hate this disease.  I hate the fact that this is my third bout of pneumonia in less than eight months.  I just had this “cute” blog post idea of listing my seventeen-part day (with each part being a picture of each CF medical regimen item in my current plan to stay alive).  But I don’t feel like being cute.  I’m mad.  I know this shouldn’t be a blog topic on a site called “Sick And Happy.”  It’s only 50% appropriate.  But let’s face it, happy is only one side of a coin.  There is no happy without sad…or mad…or afraid.

This is when I wish I could call up my sister, Kathy and see how she did it.  Or my brother, Tom, and ask what his secret was.  But I can’t.  I have to find my own course of action.  For now, it is to write until the tears stop flowing and the dog gives up on trying to console me to go back to the couch and sleep.

There is nothing fair about a disease that consumes your entire day…and night.  That, no matter what you do to keep it at bay, never leaves you alone. There is no one to do it for you.

If this were really a blog about how positive psychology techniques can help you cope with chronic illness, I would now do something like count my blessings…or appreciate the fact that at least four lobes of lung tissue are relatively clear…or that, somehow, I have not lost any weight this time around.  Perhaps I would write a letter of gratitude to someone.  Or maybe I would write about my “best possible life” to cultivate some optimism.  No, not this time. Instead, I am going to practice a mindfulness technique.  I am going to be aware of every f’ing thing I hate about this disease, in list form.  Maybe I’ll come up with seventeen.

1) I hate that I can’t call up Kathy or Tom.

2) I hate that it is 11:09 in the morning, and I have yet to have time to eat breakfast because my entire day has been treatment and IV infusion focused.

3) I hate that I have to set an alarm in the middle of the night to stop my IV and flush my port.

4) I hate that I have a port, a week before a trip to Hawaii, where I will try to cover it up so other people won’t wonder what is wrong with me.

5) I hate that I can’t seem to gain any weight no matter how many milkshakes, Jack in the Box Grilled Bourbon BBQ Steak Sandwiches, and Boost Plus that I consume.

6) I hate that when my sons come home from school with a friend, they are embarrassed to find their mother lying on the floor, doing the Vest Boogie while infusing antibiotics.  ”Oh that?  My mom’s sick, that’s all.”  Unspoken is the fact that “other mom” is the picture of health and has more friends than God, and probably cooks hot meals every night.  Unfair.

7) I hate that I feel guilty that I want company at the same time that I don’t want anyone to see me at my lowest of lows.

I hate my lungs…every last lobe…down to every single alveolus.  I don’t know why this came out as a smiley.  Maybe God is talking to me.

9) I hate spending enough time on the toilet to count the tiles on the floor, wondering how painful it is going to be to conclude this particular event.

10) I hate worrying about traveling now, wondering if something bad is going to happen far, far away from my CF clinic.

11) I hate not being able to hug my father, who once-upon-a-time had a MRSA skin infection.

12) I hate the fact that I am paranoid about even visiting him at his home in a retirement center, because such places are havens for resistant bacteria.

13) I hate that I have to get mad at my oldest son for not covering his mouth and nose at any slight eruption of air.  And he never remembers, so…I get mad a lot.

14) I hate wondering when the inevitable downslide is going to really get going, and how I am going to cope, and what my kids will think.

15) I hate that every time I get sick now, I need an entire team of specialists (or House) to figure out what to do with my lungs, my liver, my kidneys, my psyche.

16) I hate needing so many people so much of the time…doctors, partner, friends that I don’t want to ask for help, siblings.

17) I hate that today is a great day for Little League baseball, and it doesn’t even sound fun.

I’d better stop.  Seventeen hates…seventeen self-care items per day.  Sounds balanced.  Tomorrow will be a better day, and maybe I’ll feel like being cute.

Days 2.5. 2.75, 2.875, etc.

AKA…I am going out of town for a few days, sans computer.

But all is not lost.  The best thing to do is to work on improving your track sheet percentages each day, and continue with your daily walks.  If you feel like it, break into a jog for a few seconds every now and then.  It’s spring!

While you’re out enjoying yourself (remember…don’t push too hard), try some mindfulness intervals with sound.  I like to start with sound because I find it the easiest to really focus on.

Enjoy the weekend and know that I am getting my butt kicked at the Russian Kettlebell Challenge (oh, the goals I set)!

CF Wellness Bootcamp: Day Two

 

DAY TWO

Today, you begin by reading your well-being action plan.  This is simply to place those action items at the forefront of your brain, so as your day proceeds, you will be more likely to remember to do them.  Throughout the day, your goal is to complete your action items.  Very simple.  Hopefully, you chose action items that were not too daunting, and you will get to experience a wonderful sense of accomplishment each day.

Perhaps you gleaned from the chapter on exercise that it is one of my favorite topics.  It is because of this that I introduce it in this very early stage of Boot Camp.  Don’t worry.  It’s not going to be difficult.

In fact, the goal for today is to go for an easy, gentle walk with the sole intention of enjoying the feeling of movement.  The reason for introducing movement early is obvious.  Not so obvious is why I will ask you to merge movement with awareness of sensations.

Here is why:  I look at the human body as an energy transformer.  We take energy in, in the form of sensory input, food and fluids, and through the air we breathe.   We then use this energy to maintain our body and to live…to work, play, move, communicate, think, etc.

Throughout the boot camp, we are going to explore this energy management, because a well-managed energy system leads to optimal wellness.  In today’s walk, and for the next few days, we are going to look at how you take in energy through the senses.

I hope you are enjoying beautiful weather, as I am as I type this.  If so, go for a walk around your neighborhood and focus on what you hear.  Try to get out of your mind… This is easier to do with what I call “interval mindfulness.”  I learned this from a ChiRunning seminar.  The idea stems from the fact that when attempting to focus on something you are not used to focusing on, it is best to do it for short intervals, then relax for awhile and think about whatever you want, then go back to the focus, etc.

So “mindfulness” intervals are just that–short periods of time where thoughts get put on hold temporarily (don’t worry, you get to think again) and you become mindful (pay attention to) one thing, and only one thing.   It is a bit like a moving meditation.

For today, I suggest you focus on hearing for one minute, no more.  Pay close attention to everything you hear.  Try to find as many sounds as possible.  When you start to think…and you will…just gently catch yourself and go back to listening.

When the minute is over, relax and just walk as you normally would for a minute or two.  This “normal” interval is just that, the way you normally are in the world… thinking, seeing, imagining, singing…whatever.

Then, do it again…and again.  Lather, rinse, repeat.  Walk for at least 15 minutes or so.  Don’t think of it as exercise for your body (even though it is).  Instead, think of it building your “attention” muscle.  These “mindfulness intervals” will show up frequently in the Boot Camp (like…tomorrow).  My hope is that you will begin to enjoy them.

If your weather is less than ideal, either bundle up and do it anyway, OR, drive to a shopping mall and walk.  The sounds will be different, but just as interesting.

Finally, don’t forget to check off your Wellness Worksheet Action Plan at the end of the day.  Count up the number of “yes I did that”, and divide that number by the number of things on your action plan list.  This is your Daily Percentage.

Don’t get mad at yourself if you didn’t get 100%.  If you did, great!  If not, it gives you a goal to beat tomorrow!

 

 

 

 

 

Disclaimer…and DAY ONE

The following twenty-one blog posts will be taken from the e-book-to-be that I wrote two years ago.  As I stated before, I wrote them as chapters in a book, which then sat on my computer for…two years.  Since each of these has to be slightly modified, and since there is no way I’m going to be able to post daily after  a six months hiatus, I thought I needed to write this brief disclaimer.  My goal is to get each post up, and then bundle them together into a pdf package which will become my “gift” when people sign up to be on my email list.  I know that there is a way to post date the posts…such that I could load them all and time them to go out sequentially.  However, that sounds like such a daunting task that I’m pretty sure I would lose steam and it would sit for another two years.  Therefore, it will take longer than 21 days to get the entire Boot Camp up on this site.

So if you are planning to start today (and if you are, hooray for you), there is a slight modification.  Each day, simply repeat the exercises for the previous post until the next post.   It won’t hurt anything at all.  You will still get stronger and healthier, it will just be stretched out in time a bit. It may get a bit weird if I ask you to journal about a specific thing.  In that case, you can either just read what you wrote the first day, or take the opportunity to expand on it.  If one day, I ask you to do a meditation, you’d simply repeat it, or maybe prolong it a bit.  Get it?  Okay, here we go:

Ready, Set….GO

DAY ONE

I am sure you have seen the “YOU” books at your local bookstore:  “YOU: The Owner’s Manuel,” “YOU: On a Diet,” “YOU:  Staying Young,” You: Staying Young Workout,” “YOU: On a Walk.”  Drs. Oz and Roizen have quite a thing going.

I have a proposal.  On this first day of Boot Camp, you get to describe “YOU:  Your Best Self.”  It is very hard to stay on track and reach a destination without knowing exactly where you are trying to go. This very important first exercise today is to define your vision for you own wellness. Later, we will work on defining your path to this destination.  This isn’t what your parents or spouse or doctors want of you.  This is what you want.

Now, I want you to get out a pencil or pen and some paper (hopefully somewhere you can return to easily…not the back of a receipt or junk mail).  Take a few long, slow breaths, and start describing your best self.  Be completely honest regarding your potential. Be realistic, but also be courageous enough to stretch a little.  What do you look like?  How do you feel?  What is your expression?  What are you doing?  Who are you with? What are you wearing?  Where are you?  How are you spending your days?  What is important to you?

Just keep writing.  Don’t stop to spell check.  Don’t worry about grammar.  Pretend that you are painting a picture with words.  Leave out no detail.

Done?  Are you sure?  Go back and read it just to see if you left anything out.  As you read and imagine yourself as this person in your “word picture.” How do you feel?  Excited?  Nervous?  Not sure you can do this?  That would be perfectly normal.  It can be daunting to really reflect on your true potential.

Now pick out the ONE most important aspect of this vision.  It could be the smile on your face.  It could be that you are working at a very different job than you currently have.  Maybe it is that you are swimming the English Channel.  Just pick out the ONE thing, and write it down.  Is there a connection between this thing and the other parts of your vision?  This is frequently the case.

Good.  Now what is the reason that you picked that one thing over the others?  Why is this thing so important to you?  Keep asking yourself “why?” until something resonates as a “Yes, that’s it!  That is why!”  Here is what I mean:

I want to be a certified kettlebell instructor.  Ok, Julie, why is this important?

Because I set this as a fitness goal when I was depressed about being sick and needed motivation.  Okay, why did you set this as your goal?

Because this is an intense training that even “normal” people have a very hard time completing.  And why is it important that you complete something difficult for healthy people?

Because I want to feel healthy for as long as I can.

Ah ha!  You see how this works?

When you come to your “ah ha” write it down in BOLD print.  This is your motivator (or motivators if you have more than one answer to “why?”) for the next 21 days.  When you get discouraged, or tired, or you think about quitting, come back to this main REASON (S) I AM DOING THIS.

 

LONG-TERM GOALS

 

All right, now get a new sheet of paper.  Come up with four to five long-term goals that will get you closer to the VISION that you just described.  I want these to be action goals…things that you will be doing regularly in one year, which will put you firmly on the path to your vision.  So, for instance, don’t write, “I will be a famous pop star.”  Instead, it would be something like, “I will write music two hours a day, and sing publicly three nights a week.”  “I will eat a peanut butter and honey sandwich every night before bed” would be much better than “I will weight 10 lbs. more than I do now.”

Try to have your goals cover several different dimensions of wellness.  They could have to do with exercise (hint), nutrition, stress management, relationship, disease management, intimacy, work/play balance, communication, cognitive or emotional patterns, spirituality, or finding meaning.  Or maybe you have other categories I haven’t listed.  Pick a few that seem most important to work on at this stage of your life.

Don’t overdo it here.  People like to set goals.  It’s fun.  But if you set too many, the chances that you will achieve them diminish greatly.  Less is more.  Pick at least three, but no more than five, goals.  Make sure they are SMART.

• Specific:  If you are going to start exercising, exactly what will you do, how many days/week, and for how long?
• Measurable:  You need to be able to know with 100% certainty when you have achieved your goal.  For instance, completing a 5K jog is measurable.  “Becoming a jogger” is not.
• Actionable:  The goal needs to be something that you can do, or that takes action on your part.  An example is “I will call a friend weekly,” not, “I will be liked by my friends.”
• Realistic:  I’m 50, with CF, and I sink.  I should not, for instance, have the previously mentioned goal of swimming the English Channel.
• Time Bound:  There needs to be an end point.  If not, we either procrastinate, or forget what we are trying to accomplish.

 

WELL-BEING TRACKING SHEET

 

Now, you need another sheet of paper.  You may want to do this on a spreadsheet software program, but you can also just do it by hand.

If you want to do it yourself, make a grid, with 21 columns (days) across the top horizontally, and up to five rows vertically.  The name of each row is going to be ONE action item that you deem essential to do every day in order to make a darn good start at meeting your long-term goals.

Here is why.  If you do these things every day for 21 days, you have created a habit, a good habit that will hopefully carry you forward throughout the year as you begin to bring your Wellness Vision to life.

As a rough guide, try to come up with at least one action item for each long-term goal.  For example, while I was on my IV antibiotics, my vision was that I was running another half-marathon with my friend before the end of 2008.  My long-term goal in line with this vision was to be running (walk/jogging) four days per week, with one long run of up to 10 miles per week by the time of the race.  During my infusions, my daily action items to put me on the path toward this goal were to walk 30 minutes every day, and to do alternating days of 30 minutes of gentle yoga or lower body resistance work.

Ok, the tracking sheet is your final piece of mental/paperwork today.  Good job.  All you have left to do now is prepare to begin your action steps tomorrow.  Do you need to find your walking shoes?  Do you need to go to the grocery store?  Do you need to create a peaceful spot to meditate?  Whatever it is, finish up today by making all the preparations.

CF Wellness Boot Camp – Introduction

What is a “boot camp” and how can it help me?

A traditional “boot camp” is an intense training program for military recruits.  Fitness professionals everywhere have stolen this idea.  Now you can easily find an early morning community “boot camp” style exercise class at your local community college or gym.  They are basic, nothing fancy, no frills sessions complete with old-fashioned calisthenics, running, jumping, climbing, grunting and sweating. New friendships are forged each session as groups of people meet at ridiculous o’clock in the morning in ungodly weather with the mutual goal of becoming fit.

It occurred to me during a recent exacerbation of my cystic fibrosis that the concept of a “boot camp” could be extremely beneficial to people dealing with the ups and downs of living with chronic disease.  In this series of posts, I discuss how a focused period of intense attention to health and lifestyle improvements can assist in “coming back” from a CF setback, but the idea can really be applied to any ongoing health problem characterized by exacerbations and remissions.

In the first rendition of this chapter, I had come up with a three week plan following a course of home intravenous antibiotics which I needed for a basic “tune up” following a series of upper respiratory infections.  I felt less than energetic, and was coughing more than usual, but certainly was not so ill that I couldn’t set exercise and nutrition goals with full confidence that I could achieve them.

Then, as fate would have it, the program AND the book got put on indefinite hold as I became extremely sick, hospitalized with acute pneumonia and needed another full four week course of treatment.  I lost seven percent of my bodyweight, probably all from muscle mass since I didn’t have much body fat to start with.  Suddenly, it was “exercise” to get up from the chair and walk down the hall to the bathroom.

My confidence was shaken, but the end result was a slightly different perspective, one that is more in line with the majority of adults with CF.   The “boot camp” plan that follows is one based on the very real fact that when you are coming back from getting knocked down, there are two important principles to follow.  First, you must have compassion for yourself and for what your body is dealing with.  Second, you must be patient and persistent.  And never give up.

As a wellness coach, I have helped many people come up with “wellness visions” and design strategies to achieve them.  I work mostly with people with serious health problems, and it is essential for me to remind people to have big goals, but to go slowly and carefully toward them.   This is what I have tried to do with the CF Wellness Boot Camp.

The intention is that you will do this after treatment for an exacerbation.  This is because I know you feel better and stronger than you did a few weeks ago.  I know your lungs are as clear as they can be, and your energy level is optimal.  Now is the time to act.  If there is ever a time to get healthy in ALL areas of your life, it is now.  USE the benefits that modern medicine has provided through that IV tubing, and SUFFUSE the rest of your life with wellness.  Now, if you aren’t coming off of IV’s, that is no reason not to do this boot camp.  This program is designed for anyone who wants to achieve optimal wellness, regardless of where he or she is starting.

So dust off your Vest, find your flutter, and recommit to hypertonic saline. You are about to learn a new response to this thing called Cystic Fibrosis.  It may knock you down again, but you’ll get up again, and again, and again as you refine your own personal “boot camp” to meet your needs.

Overview of Program

This program is designed for people with cystic fibrosis.  It is especially useful if you are recovering from an exacerbation. This is intentional.  I know from personal experience that following a “tune up,” people feel the best, and are most interested and motivated to do what it takes to KEEP feeling good.  With memories of the hospital fresh in their minds, they are also more likely to take on new practices that may help keep them out of the hospital for a longer period of time.

It is said that three weeks is the minimum time it takes to establish a new habit.  From Day 1, you will be asked to make small step improvements in the areas of exercise, nutrition, rest, and stress management.  Hopefully, by the end of the 21 days, these practices will be on “autopilot” just as brushing your teeth twice a day is something you simply do.  You don’t need to get psyched or motivated to brush…it just happens.

In addition, during the 21 days you will explore other practices that you will hopefully find enjoyable.  Not only are many of them fun, but they are also good for your health.   You may also want to incorporate some of these into your daily regimen.

Think of this three week period as an intense “time-out,” with the goal to focus completely on your well-being, and how you can learn to extend the “post-antibiotic” high as long as possible.

There will be specific activities to do each day (created by you), as well as daily introspection exercises, either by journaling or with online activities designed to teach you something about yourself.

One of your first journaling activities will be to create a “well-being” tracking sheet.  Here, you will list 5-10 things YOU KNOW would be beneficial to you health to do on a daily basis. After a careful consideration of what your body needs and what your goals are, you will consider seriously what areas of your life could use some tweaking.  It may be adding more (or, some) exercise to your days.  It may be getting more rest.  It may be reconnecting with friends.

I will ask you to envision exactly what you want your life to look and feel like one year from Day One of the program.  This will be an exercise in imagery.  You will imagine you as your best self, and paint that picture in words in your journal.  Then, you will set some long-term goals that will enable that vision to manifest.  These goals will be behavioral…they will describe what you are doing, regularly, 1 year from Day 1, in the areas of exercise, nutrition, stress management, sleep, disease management, and social connection.

Let’s say that in your vision you are climbing Half Dome with ease.  Behavioral goals to support that vision might include building up to this level of fitness and stamina by doing aerobic exercise for 30 minutes, 3 times a week at an intensity of 75% of your maximum.

Or maybe your vision is that you are 10 lbs of pure muscle heavier than you are now.  A behavioral goal in line with that vision may be that you are lifting weights 3 times a week for 30 minutes and eating protein with meals six times a day.

You will create S.M.A.R.T. (Specific, Measurable, Actionable, Realistic and Time Bound) goals that are relatively long term (12 months), and then create your list of five to ten things that put you on the direct path to those goals.  By the end of 3 weeks of doing these things, you will be well on your way to achieving your vision.  You will also know in your bones that you are capable of making a difference regarding your health, because as you begin to achieve your behavioral goals, you will begin to see real results in the way you feel and look.

The beauty of the Boot Camp program is that it can be used over and over again.  The reality of Cystic Fibrosis is that this is exactly what we need. We get sick, over and over again.  When we do, instead of thinking, “Arrrg, I have to start all over again!” we can think, “Oh boy, I get to do Boot Camp again!” Each time can be tailored even more specifically to you and your body as you learn what works best.

Tomorrow’s post will focus on preparation for the following three week program.  For now, try thinking about what areas of your life could use some mild tweaking.  Your body knows, and so do you.

 

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