Lifestyle Changes

I have been slow to put information about lifestyle changes up on the site. A lot of the pages on the site grow out of conversations I have with people who are interested in what is working for me and my sons. A lot of people who talk to me tell me up front that they will never make drastic lifestyle changes like I have. Since no one is discussing this with me, it is hard for me to figure out what to say about it. I also get the impression that if I push the topic, people will turn a deaf ear to everything I say. Since I don't want anyone to lose out on the benefits they can get from the things they are willing to try just because there are other things they aren't willing to try, I have been hesitant to say too much about lifestyle changes. I want the site to offer options for people to pick and choose from. I want it to be descriptive rather than prescriptive. But the reality is that my sons and I could not have gotten so much healthier without making major lifestyle changes.

The other reality is that those changes were made gradually over a long period of time. When people hear about the way I am living curently and mentally compare it to the way they are living currently, there is a Grand Canyon of a gap between the two and they can't imagine crossing it. But I never set out to take things this far. I started with making relatively small changes and just kept doing what was working and gradually improving on it. Gradual, small changes added up over time and now there is a very big difference between my lifestyle and the typical American lifestyle. However, it was a journey made with many small steps rather than one big leap.

In fact, for anyone who is considering making lifestyle changes, I would actively discourage you from approaching this as a big leap. If you are in frail health, sudden and drastic lifestyle changes could do serious harm and might even kill you. I would encourage you to start small and pace yourself. I think it took me three years or so to gradually get rid of most of the stuff I owned. It has also taken several years to move from sleeping in a king sized bed with lots of sets of sheets, decorative pillows and the whole dream house type deal to sleeping on the floor with no bedding.

Learning to manage the process of change and to pace ourselves has been a huge part of getting well. Most people are resistant to change and most people view change as loss, which makes it a frightening and undesirable thing. When I talk about living with drastically fewer material possessions than the typical American, most people seem to see that as a hardship and a sacrifice. But my sons and I haven't experienced it that way. For us, it has been wonderfully freeing and joyous to realize we could spend less time cleaning things we hardly used and it would also let us take less medication, spend less time in the emergency room and so on. We feel like little kids getting away with something. And we giggle about it.

So I don't want anyone to take a flying leap of faith off a cliff. I only want to tell them that if they are tired of being trapped on the cliff's edge, there's a staircase down. If the distance between where you are now and where you want to be is large and that frightens you, don't look at that too often -- take a peek once in a while to gauge your progress, but don't let fear keep you frozen in place. Instead, keep your eyes firmly fixed on the next small step you have to take. Here is an example of some of the small steps we took and how they each led to the next logical step:

I began washing more.

When I was still very ill, I found that sometimes if I washed all my bedding and also any curtains and throw rugs in the house, I could spend the evening in the laundromat instead of the emergency room. It soon became habit that if I was having trouble breathing and just feeling sicker and sicker, I would head to the laundromat. Most of the time, this made enough of a difference that I was able to take care of the problem myself without needing to see a doctor and without needing more prescription drugs. After a few months of this, I got tired of routinely running to the laundromat in crisis and began proactively washing all of our bedding, curtains, towels and throw rugs every Saturday to prevent myself from getting to that crisis point. This was about 18 loads of laundry every Saturday on top of the usual two loads or so a day of clothes and towels. It was exhausting. It cost a lot of money. And it killed my entire weekend. I felt like I had no life at all. I felt like a slave to my possessions. And I began to feel like a) I could have replaced this *@&%^ throw rug by now for the money I have spent on washing it and b) I don't really need this many sets of sheets.

At that point, I began to fairly cavalierly replace items that were too expensive to try to clean or too hard to get clean and I also began to generally pare down and own less stuff. It became very clear to me that the cost (in time, money and energy) to keep my possessions clean enough so I wouldn't have to spend all my time in the ER was just too high. I didn't want to live this way the rest of my life. I also began to feel that "If washing everything I own can routinely keep me out of the ER, maybe it's not just CF that's killing me. Maybe it's also my possessions." And while I can't change the fact that I was born with CF, I can change how many possessions I choose to have and what type of possessions I choose to have. This led to two simple principles that we still live by:

• When in doubt, throw it out.
• Less is more.