“Have you taken your enzymes, Gunnar?”
“Did you refill your prescriptions?”
“Have you done your treatments yet this morning?”
“Now cough, Gunnar!”
“How was the doctor, Gunnar?”
“Are your PFT’s okay?”
“Did you start your IV yet?”
“Gunnar, it looks like you forgot your vitamins!”
The list goes on and on…
Life with cystic fibrosis often seems like it’s nothing more than a list of reminders. For as long as I can remember, someone, somewhere has been reminding me to take a medication, call the pharmacy, settle something with insurance, or clean my equipment… even if I’ve already completed the task.
I think it’s something that’s become so engrained in my support system – from my parents to my friends – that’ its second nature for a lot of people. I think they feel as if it’s their responsibility to play an active role in my care, which is amazing. I’ll never deny anyone the opportunity to do so.
With the reminders, though, sometimes comes frustration. What I’m really reminded of is having been dependent on others for such an enormous part of my life – especially when I was younger. I still get the reminders, even though I’m clearly capable of self-sufficiency. It almost feels like it’s a window to the past when I was learning how to be self-sufficient.
The reminders played a bigger role when I was a kid – forced coughing during treatments, childhood forgetfulness and everything in between. Any child, with or without CF, is reliant on his or her parents to shape the world in from of them. When we introduce chronic illness into the mix, kids can often be left feeling like there isn’t an independent life out there waiting for them.
In fact, I think my parents recognized that when I was in high school. Like many Americans high school kids, I had a curfew and other house rules set up, but on my 18th birthday my dad told me that they were going to lift the curfew and every other rule he and my mom had set in the house. He told me that it was up to me to “make them proud, and feel good about my choices in life,” but there were no longer any rules governing my existence in the household. Looking back it was my first step towards independence. It was the ultimate dress rehearsal before college and then “the real world.”
I think my parents saw my need, really my want, to be my own person – the reminders, however, continued, despite having proven the ability to take care of myself (for years at that point).
The reminders, more than anything else, reinforce the overall control that cystic fibrosis has had over a person’s life.
We always love saying, “CF doesn’t define me!” It’s the most cliché thing a chronic illness patient can say. Sure, it’s part of our personality, maybe the biggest piece of the puzzle, but not the whole thing. The simple fact of the matter, though, is that the anchored treatment times, pills and overall care of the illness are controlling. Sure we could totally forget about care all together and live entirely free, but that freedom will be short lived (morbidity pun).
Independence is something we crave, and yet something that seems nearly impossible to achieve.
For that reason I value my alone time. I like falling off the grid. Free from the reminders and monotony of CF routine.
I’ve said in countless blog posts that a good routine is one of my keys to success in CF, but what about when that routine feels overly controlling? Is it worth it to change the routine? The answer is whatever your health tells you. If your health is good, I say no. When that routine doesn’t have a need to change (don’t fix something that isn’t broken), I think it’s appropriate to build in “me time” to your life. Figure out a time to step away from whatever feels controlling for a bit. Maybe that’s how you tweak your successful routine. That’s what I do!
I know that my craving for independence is best satisfied when I give myself the opportunity to do things for myself – with or without my CF in tow. For example, if I go on a trip, I’m bringing my CF with me – I’ll still be doing my treatments on both ends of the day – or if I’m off at the gym for a few hours, my CF is left at home – I’m relying on my strength and motivation to get better. Both events, however, allow me to express my independence from my static routine. I have a number of things I lean on when I want to be left alone – playing video games, reading, going to the movies by myself, running around the block, going to the gym. I utilize each hobby (I suppose that’s what you can call these things) not only as a coping mechanism, but really because I enjoy them and being able to do them according to my own free, independent will. They allow me to experience life for what it is – independence.