CFLF Blog

A Matter Of Life Or Death

Tim Wotton playing field hockey

Last week just as the evening was drawing in I went for a run in my local park, South London. It had been a sunny and warm September day and I knew that I had to make the most of it. I view my cystic fibrosis (CF) as a reason to exercise, not as an excuse not to.

If I can’t make an effort and bust a gut on a pleasant night like that then it’s a missed opportunity and I’d feel that CF was beating me. I’m too determined to let that happen…

What Does Cystic Fibrosis Feel Like?

I am always curious when it comes to the questions people ask or don’t ask when they find out about Cystic Fibrosis. Life is all about asking the right questions, right? My good friend once asked me, “What does CF feel like?” Without giving the response much thought, I simply replied the common response; “It feels like breathing through a straw.” That answer doesn’t really do justice to the question. And, this question has resonated with me for a few years while I have articulated the answer.

The List That Keeps On Giving

I've never really believed in "bucket lists".  It's strange to me to have a set list of things you want to do before you “kick the bucket”.  What happens when you only get to a few of them, are you left feeling like you’ve failed at life?  Or worse, what if you do everything on your list, then what?  With all of your adventures and goals checked off the list, what's left to do?  For a while years ago I had a list of things I wanted to do, most of which were completely unrealistic.

My First Love

The gym is always packed and frankly, I hate it.  I'd like to go hiking but the sun is so bright and my medications make me susceptible to burns.  I wouldn't mind swimming, but chlorine gives me a headache.  Skiing?  Too clutzy.  Mountain climbing?  Leave that to Brian. Rugby? Got kicked off the team after helping our opponent up after a tackle.  Cheerleading?  Not since college. Jogging?  Was fun until my knees hurt and my mom became faster than I was. Crossfit?

Giving Back

Just four years ago, I got involved with Cystic Fibrosis Lifestyle Foundation (CFLF) to give back some Time, Talent and Treasure (the 3T’s). For many years my family and friends have supported many cystic fibrosis non-profit organizations with donations, volunteer time and participation in fund raising events like Great Strides.

CF Strong

Half Dome

Just a few short years ago if you asked me if I could ever see myself writing a blog post for a blog focused on being active with cystic fibrosis I would have laughed.  As a child I was active. I woke up early just so I could jump on the trampoline. I danced and even did gymnastics for a few years. I rode my bike and rollerbladed around the neighborhood. I enjoyed being active and outside and somewhere along the way I lost that.

The Gaps Between Trees

I have reached the top of the chairlift at approximately 11,400 feet above sea level at the Highlands Bowl in Aspen, Colorado. Amazing technology has brought me to a spectacular place that only a small percentage of the human population will ever get to experience.

 

30 Is The New 60

This is probably my tenth attempt at writing a blog post for this week.  Since getting out of the hospital I’ve been trying to catch up on work that I missed all the while keeping up with treatments and exercise.  Getting out of the hospital feels like getting out of jail in a lot of ways, and it’s often hard to readapt to life outside the hospital walls.  And dealing with more medical problems on top of it, only makes it even harder.

Patient vs. Visitor

My Grandpa has just had a heart attack. This is the first time that I can recall in my thriving cystic fibrosis ridden life that the role of being a patient and being a visitor is reversed. As I am gathering with my family encompassing my grandpa’s hospital bed I feel a sudden onset of a unwelcomed novel feeling. The room is filled with nurses turning off the beeping monitors, but they are not mine. Doctors cluster around the patient who is not me. IV’s are having blood drawn out from them, but it’s not my blood. How could I not know what to do? What to say?

Grief and Chronic Illness

Grief.  It’s an emotional experience so powerful and all-consuming one wonders if survival is possible.  Loss and subsequent grief seems to be something that those with CF experience quite regularly.  The loss of time when respiratory therapy treatments take multiple hours a day.  The loss of the ability to breathe easily and have energy.  The loss of spontaneity in having another exacerbation and being confined to IV antibiotics.  The loss of patience in having to call the mail-order pharmacy for the fifth time because they billed incorrectly… again.  The loss of having a romantic relation

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