Step One of Perfect Workout: Rolling

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.

Tonic and Me: Traversing the Winter From Hell

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 http://www.tonicselfcare.com.

 

 

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.

How to Over Do It

It has been some time since my last post.  If you were wondering how long you had to do Day Two, or if you have given up on me, I apologize.

This is what happened:  In short, I went, I conquered, I returned to crash and burn with pneumonia.

My mother was right, and so was my father, sister, partner, and probably even my dog.  You really can have too much of a good thing…even exercise.

Someday, some post, I will relay my experience at the RKC.  It was one I will always remember, and that I will never regret doing.  It was amazing to feel strong, to realize that I was as tough as the next guy, even though my lungs suck (ha, no pun intended).  It was humbling to realize how much I didn’t know, but equally gratifying to complete something I had set as a truly ridiculous goal for a 50 year old with CF.  I met great people, friendly people, scary strong people, and a few people who were there, like me, just to push themselves.  I was forced to “come out of my shell” in a sea of strangers (I really am shy), to explain my cough to people who worried for me, to assure people that I wasn’t really going to leave a lung on the floor–it just sounded that way.

I wore a Life Is Good shirt this, the first day, because it was really how I felt…happy to be there even though it was 35 degrees outside…happy to be swinging kettlebells with the best of the best…happy that my body was cooperating (well…it was at that moment)…just happy.

So I learned my lesson.  No more Navy Seal-like goals for Julie.  But, man was it a blast.

Back to Boot Camp posts.

CF Wellness Boot Camp – Prepare!

A main reason people fail with New Year’s Resolutions and other heartfelt promises to themselves is they don’t prepare!  You can’t just wake up one day after never eating properly a day in your life, say, “I will now eat a healthy diet” and expect to succeed. It’s just not that simple, as my favorite pathology professor used to say.

First, you really need to figure out why you want to eat better, and find motivators that will be there for you when your resolve wanes.  Then, you need to actually LEARN what is healthy to eat.  You also need to get some support with your new resolve.  Maybe you’ll find a friend to make this change with you, or at least someone who will support you in your endeavor.  You also need to plan ahead what you will do when the usual unhealthy temptations are in front of you, or when you have minimal time to cook.  Then you will need to shop for healthy food, right?  You’ll make a list, and just do it.  It would also be helpful if you got rid of all of the unhealthy food in your house.  Why keep it?  Lastly, you will want to set some reasonable goals around your eating if you want to succeed.  It is much more likely that you will achieve your goal of eating a healthy diet if you start small, with easily achievable steps, and then build on those successes.

ALL of these things need to happen before you take your first bite of fresh organic baby greens.

So let’s begin by gathering what you’ll need for the next three weeks.  First, you need a journal, or something to write in.  You also need a pair of comfortable walking/jogging shoes, and an exercise mat or towel to do some light stretching exercises (I am assuming that after reading the last post, you will be convinced that some daily exercise should be one of your daily activities).  An inexpensive pedometer would be nice (one that just counts steps…it is not necessary that it talk to you or calculate your exact longitude and latitude).  And, finally, internet access will be helpful for some of the activities that I will ask you to do.

The following pieces of exercise equipment will be extremely helpful if you plan on following the exercise instructions demonstrated  on the YouTube channel  as part of your Action Plan:

Stability ball: (usually 65 cm is a good size, if you are 5 ft or less, go with 55 cm; 5’7 (how did you get to be that tall?) or up, go with 75 cm).

Resistance tubing with handles:  You can find this at any sporting good store.  Try to get at least one tube with very easy resistance and one with medium resistance (they are color coded…just look at the packaging to get the right colors).  If you are strong, and money isn’t a huge issue, get the hard resistance, too, or buy some dumbbells.

That’s it!  You don’t need the Bean, or Perfect Push-Ups, or an expensive gym membership.  You can do all the exercises in the comfort and privacy of your own home.

Finally, and probably most importantly, what you will need is an attitude of pure curiosity.  Can I feel better?  Could this really help?  I wonder what would happen if I really did everything she says for the whole three weeks?

Here is what you DON’T need, and what you should put far, far away for the next three weeks:

Naysayers:
You know who they are.  These are the people in your life who can’t seem to think a positive thought.  Sometimes, these are the people who let us get away with feeling like “victims of CF.” Don’t let anyone sway you from taking care of yourself for the next three weeks, and just see what happens.

The idea that “nothing you do can help.”
Sometimes, we are our own worst “naysayer.”  There is plenty you can do to feel better.  No, this program isn’t likely going to change your pulmonary function test results, but if you take it seriously, you might improve your attitude and enjoyment of the life you do have.

Junk and fast food.
Let’s just put this stuff away for three weeks.  I know you need calories.  I am not saying, “don’t eat food.”  I am saying, try to find and eat healthy food only, for just three weeks.  Be curious, and see if you can imagine your body as an infant, and you as the mother/father.  You wouldn’t feed an infant french fries…or sugar laden soft drinks…or Twinkies.  You would feed him/her what nature intended for the baby to eat.  Think hard about this…what do you think is “natural” about KFC?   Cheetos?  Whoppers?  For just three weeks, as an experiment, eat whole foods…as they are found in nature.  Max out on fruits and vegetables, whole grains, nuts, legumes, lean sources of protein, healthy sources of fat (olive oil, avocados, more nuts and nut butters) and fresh water.  Just make sure to eat early, eat healthy, eat often, and eat a lot!

Internet boards that are full of pessimists
Why waste the energy?

Negative/violent television and radio
Again, why waste the energy paying attention to negative garbage?

Here comes the pep talk.  You only get one body.  I know…yours is a bit challenging to take care of, but it’s still all you’ve got.  It’s easy (I’ve been there) to believe that this body of yours is defined by the fact that your CFTR protein doesn’t work that well (or at all).  One gene out of about 30,000 is messed up.   Yes, I know…that one stupid gene can create a lot of havoc.  But many, many things still work quite well.  While there is much we cannot control about having CF, there is still much we can control in how we respond to our CF.   This is what this program is about.

Finally, you need to let your MD know that you are doing this 21-day program, which will (hopefully) include some exercise and healthful dietary changes.  I won’t be asking you to change any medications or take any weird herbs or do high colonics.  The most radical exercise will likely be a guided meditation or two.  My guess is that she/he will be all for it, but it is always smart to be on the same page with your medical team.

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