It’s come to my attention that I am time poor. From sunrise to sunset I am scheduled. If I am not sleeping, eating, commuting, working, dog walking, cooking or cleaning, I am generally doing a CF related task. I feel like I’m stuck on a hamster wheel going round and round because I have misplaced the OFF button.
On Saturday night I cracked under the pressure of all I have to do. I experienced a meltdown. Mayday. Mayday! Mayday!
I know that most people find it difficult to fit all they need to do each day into a mere 24 hours. We live in a very busy world. We all have our own time-taxing activities: raising children, studying, working a high powered job, working a second job, studying AND working a second job, caring for an aged parent, house hunting, house painting, lawn mowing, car washing, exercising, creating our masterpiece, learning to sing, and many more things besides.
I don’t profess to have less time than others. Or to have greater demands upon my time. But I have some unique demands upon my time.
Like staying alive. Staying alive takes quite some time and is largely, but not solely, due to commitment to treatment.
I don’t mind popping (quite) a few pills. That’s easy peasy. The thing that really irks me about trying to stay alive is all of the treatment time it takes. Treatment involves:
- Getting the mucus up and out of our lungs.
- Breathing in powders or solutions that thin the mucus, open the airways, or deliver antibiotics straight to our bacteria infested airways.
- And then. Then there is the sterilising. Which takes a while and is fraught with danger. I just might forget I am boiling medical equipment on the stove. I just might melt $2000 worth of said equipment. I just might inhale noxious plastic fumes when I realise the error of my ways. I also just might hate myself a tiny little bit for a week or two.
Dave devotes a minimum of 2 hours to his treatment every day. I will never ever meet a person more dedicated to treatment than Dave. Kudos to him. I devote almost 2 hours a day to treatment. I have a little more wriggle room when it comes to treatment and am therefore open to persuasion if a better offer comes along. I do my best, and my best is generally good enough.
In addition to performing my own treatments, I also help Dave out with his treatment to try and extend the time between Dave’s hospital admissions. I give him half an hour of chest percussion on a weekday and an hour on weekends. Let me be honest. Helping Dave out with percussion is not the highlight of my life and I do whinge about it a little bit…. ok, a lot. It’s boring. It’s tiring. My back and legs hurt as I stand in one place for an extended period of time. Sometimes my wrists hurt if they are particularly arthritis-y. A fair bit of sighing and huffing and puffing escapes me. I sit down, or even lie down, at regular intervals when Dave is otherwise indisposed coaxing the mucus (which I have just loosened by bashing his chest) out of his lungs.
Treatment has no positives whatsoever other than extending our lives. Which is of course the reason why we do it. We would like as many years together as possible before death does us part.
In short, because of CF, a lot of our life is spent doing something which is necessary and no fun, which in turn, leaves less time for the unnecessary but fun things which make life actually worth living. A conundrum.
Sometimes, we try to imagine what life would be like with another 14 whole hours each to play around with and do whatever we like. That’s 28 hours a week combined. 112 hours a month. 1,344 hours a year. That’s a lot! It’s almost unimaginable what life could hold for us if treatment were not part of the equation.
What would I do?
- Sleep. I could get up a whole hour later. Every. Single. Day. What is this bliss?
- I could learn to juggle and join the hoards of jugglers practicing in the park across from our house. Or I could tightrope walk. Or breathe fire. Or hula hoop. These activities happen in the park too.
- I could cook curries. From scratch.
- I could vacuum the burgeoning colony of dust bunnies residing under our bed.
- I could master photography like a boss and have a career change.
- I could “allow myself to be spontaneous” as so urged by my fortune cookie.
- I could write a Pulitzer Prize winning novel.
- I could figure out what’s wrong with our wifi.
- I could spend ridiculous amounts of time with my soon-to-be-born niece or nephew and thoroughly convince them how great their Aunty Janette is.
- I could just sit and breathe deeply and slowly to reset my parasympathetic nervous system. This is an actual thing. And it works.
- I could find out what, if anything, happened between Alicia and Will in Season 3 of The Good Wife. I skipped straight from Season 2 to 6 so I have some pretty sizeable gaps in my knowledge of the major plot points.
- I could have friends over for dinner regularly and dazzle them with my cooking-a-curry-from-scratch skills.
The possibilities are endless. Endless, I tell you.
Things need to change. I need to find a way to achieve all I absolutely need to do as well as enjoy some down time.
Basically, I either need to be a Time Lord, or cure CF. Piece of cake.
What taxes your time? How do you ensure you have enough down time? For those who need to factor in a chronic medical condition (or two), how do you balance your other responsibilities with the significant self/other care time it takes? I’d love to read your comments below.