TOP FIVE STRATEGIES FOR LIVING WELL WITH A CHRONIC ILLNESS

by on August 5, 2008
in cystic fibrosis, Wellness

I get asked frequently, “how do you stay so healthy?” It’s a good question, really, because here at am, almost 48 years old, training for a half-marathon with a disease that kills half of its victims by age 37…of lung failure, usually. It’s a rather morbid subject, because it forces me to think what might have been, and could still be. I don’t fully understand why my cystic fibrosis has been so easy on me compared to most others, and I doubt that I ever will. I just keep on going as best as I can, and hope that my luck continues.

Cystic fibrosis shares much in common with other illnesses that are life-long; therefore, I think what I have learned along the way about staying healthy–regardless–may be of value to many other people, even those with health issues that are different from mine.

I have five very practical rules that have been evolving over the years. They have kept me healthy through medical school, through psychological traumas of loss of a sister and divorce, through mothering two boys largely on my own, through retirement from medicine and the loss that it brought, and through the start of a second career. I’ve definitely been through my medical ups and downs…but, as the song says, “I get knocked down, but I get up again!”

Here is how:

Rule #1 is simple: Don’t look back, and don’t project into the future. Stay right here, right now.

I hate thinking about the future, and I avoid it at all costs! This can actually be a problem, because I often fail to communicate my plans (for the future) to key players in my life. I can even forget to look at my planner, which is not good when your career is largely through telephone appointments. But these are small costs to pay, when I consider the anxiety I would feel if I dwelled on future plans and the “what ifs” that could ruin them. What a way to spoil a good day!

I fully embrace Eckhart Tolle, and his book, “The Power of Now.” It has lead to my mantra of “now is all I have.” As my son quoted the other day from the movie Kung Fu Panda, “the past is history, the future is a mystery, and the present is a gift…that’s why it’s called a present!” It’s so true, yet so hard to remember sometimes. I work at this ALL the time.

Is this too simple and too obvious to embrace? Try it for an hour or so, and see first, how hard it is, and, second, how good it feels. Even if you are in pain, my guess is that the physical pain is less than the psychological pain and fear that comes with dreading what the future might bring.

Rule #2: Exercise every day (unless you are sick, of course). This has been my rule since college. It will be my rule until the day I die. I always have found a way to do this…even through medical school (which I still can’t believe I did…when I look back on it). Now, when I preach this, I hear a lot of “yeah, buts…” “Yeah, that’s easy for you to do…but I don’t have time.” Or, “Yeah, but I just don’t have any energy…this (name of disease here) is just too draining.” Or, “It hurts too much.” Or, “I don’t dare…what if my (fill in the blank) gets worse by the stress?” Yada yada yada

I am not a sympathetic soul about this one. You don’t have to go out and run 10 miles. You don’t have to bench press your weight 10 times. You don’t even have to work that hard. You just have to move. We have evolved to move…even if our bodies are not perfect, they are still better off in every imaginable way when we move…just a little (30 minutes)…every day. As we say in our Cystic Fibrosis Exercise Pilot Program at Stanford, “If you can breathe, you can exercise.”

Rule #3: Laugh every day. Now sometimes this one is tough, I know. I can remember a few days where I slipped up here. It’s easier if you have family or friends around, of course. You may have to change the topic to something light-hearted if everyone else is crabby, but this is doable. What is harder is laughing when you are alone. Ellen Degeneres helps me with this one. I can’t keep a straight face when I watch her…it’s impossible. Or sometimes I’ll just watch my dogs play and that will work. A funny book or a stupid sitcom might do it for you. Just find a way.

Rule #4: This one is going to sound very “rose-tinted.” I apologize in advance.
When you have dealt with the reality of your illness and have come to accept that it is with you for life…when you have grieved for an appropriate amount of time (this is variable, of course) for whatever you have lost as a result of being ill …when you are done with these essential things—it is time to find the opportunity.

There is at least one opportunity that is only present as a result of your illness. There are probably several. It may take awhile for them to present themselves, but they are there if you are open to receiving them.

There are many, but the greatest opportunity that having cystic fibrosis has given me is the clarity of knowing that I am not my body, nor am I anything that is wrong with my body. Maybe (hopefully) I would have eventually realized that in a healthy body, but it would have come much later in life (probably when I got old and sick☺). This has enriched my life in ways I cannot really describe, and it came to me because I was defective somewhere on both of my seventh chromosomes.

Rule #5: Find your passion in life, and make sure you engage in it as many days, in as many ways, as you can. Yes, sometimes we need to do boring jobs to keep food on the table, but there are still many hours left in the day when the work is done, or when the weekend comes. One of my passions is writing…usually about health and wellness, and this blog is the result. So even if you hate this material, it is doing someone some good…me.

So that’s it. If you read it over, these are basically good, old-fashioned ways of staying happy. Being present, being active, finding humor, finding meaning, and living with passion all have one thing in common…they make for an abundance of positive emotion. And that, in my opinion, leads to optimal health, no matter what body in which you reside.

Subscribe to feed
If you enjoyed this post, please consider leaving a comment or subscribing to the RSS feed to have future articles delivered to your feed reader.

Comments

4 Responses to “TOP FIVE STRATEGIES FOR LIVING WELL WITH A CHRONIC ILLNESS”
  1. BJHance says:

    Hey Julie,

    Great site. I can’t wait to see more. I also recommend Brian Regan for laughter (Google him and you get some good u tube spots) when the dogs are asleep and there’s no funny humans close by and you can’t find Ellen D. on reruns. Also, I like the hardest working man in show biz, James Brown, for lightening any mood. IMPOSSIBLE to listen to him and be depressed….

  2. Julie says:

    Oh, I’m so HAPPY someone read my blog!!!!
    Thank you, thank you, BJ. I will check out your suggestions tomorrow. Today, I have already laughed…a lot. Cookie at the beach is a site to behold.

  3. Chris says:

    Thanks for doing this site. I’m guessing thelungshenoworksogood.com was also taken, and besides, it would be pretty tough to come up with 22 posts to correlate to that URL.

    Seriously, though, you are an inspiration to me every day and have been since the day I met you. I hope you don’t mind if some of us “well” people read your blog, too. We need your brand a “medicine” as much – maybe more – as folks living with “illness.”

  4. Barbara Austin-marcotte says:

    Hi, thanks for my first day of sick and happy. I have decided you will be my watch or read during my pipe. I hate to do it. But it helps. I have LAM or lymphamgioliomyomatosis or close. Late visit at NIH fev1 drop of 10 yuk. I will change and you will help me on my journey. Thanks have a great day.

Share Your Thoughts