Setting Priorities

I took a shower on Friday.  It had been 10 days since my last shower.  Or maybe it was closer to 14 days.  I’m not really sure. I know that probably sounds gross to most of you. I’m lucky that I apparently don’t have strong body odor.  Yes, I’ve asked.  Since I don’t have a sense of smell (because of PCD) it’s something I’ve been paranoid about in the past.  And I know it’s not just friends being polite because these friends would have told me. 

I was in Morocco in August of 2001 with several friends, walking around Fez and a very hot day.  We got back to the hotel and Kathy (one of Running On Air’s board members) and her sister Susan were talking about how much they stank and needed to take a shower.  I asked if I smelled, and they (grudgingly) said I didn’t.

The thing is though that these days I typically go about a week between showers. I’ve never been a fast shower taker and with combing out and drying my hair it takes a good 45 minutes to an hour.  It also takes a lot more effort than it use to.  I’m considering getting a stool to sit on so showering doesn’t take as much energy.

The reality is almost everything seems to take a lot more effort. And it doesn’t just vary day to day but even hour to hour.  Some days I can move around the house fine and go up a flight of steps with almost no increase in breathing and other days I have to take a break unloading the dishwasher.

I just finished four weeks of IV antibiotics that were on an 8-hour schedule.  This means I was finishing up my nightly IV and going to bed around 10:30-11 at night and getting up by 7 to plug into the next IV (IV needs to be done 7-9 hours after the previous one).  While 8-hours of sleep is great, the truth is that I don’t just fall asleep the minute my head hits the pillow.

Despite doing several bronchodilator treatments a day and being on IV antibiotics for four weeks, I spent Thursday night on the couch listening to my lungs gurgle and wheeze with every breath I took.  It’s discouraging to have my airways be so tight and constricted after four weeks of antibiotics and seemingly constant airway clearance.  I ended up falling asleep on the couch as I didn’t want to wake Ed up with my constant coughing.  I think it was around 1 am.

There’s a lot of stuff falling to the bottom of the to do list these days.  And bathing is one of them.  Of course working from home and not leaving the house often helps.  I’m lucky I get to work from home fulltime, which was happening even before Covid.  I would be on disability otherwise.  I’m two years and two months away from being eligible to retire, so it’s worth continuing work financially, which will help ease disease progression expenses post retirement.

Although working fulltime this past year is a bit of a misrepresentation.  If a full week of work is 40 hours, I averaged about 27 hours this year.  That’s 13 hours of leave a week.  Now of course all of that was not related to being sick, but most was related to having PCD.  There were probably 80 hours’ worth of travel or Longwood Garden days, and probably 48 hours were due to trips to Georgetown as part of the drug study I was in, along with 4-6 hours a week for 6 months for pulmonary rehab.  Still though, that’s averaging 12 hours of leave a week due to PCD.

I’m lucky that my job provides flexibility in when I can work and of course being able to work at home.  I can work from 5:30am -10pm Monday through Saturday and essentially work comp-time on Sundays. I’m also lucky that they have a leave transfer program.  I can take that much leave because of the generosity of healthy employees who donate their excess annual leave to me through the offices leave transfer program.

Now that things have opened up, we traveled to more Scottish games this year including to Canada’s North American Championships.  I feel bad though because I’m not in the shape I use to be, I require more oxygen, and I’m just generally moving slowly.  I feel like I hold Ed back from doing the traveling he wants to do because I can’t keep up.

I know I make more work for myself with Running On Air.  I spent much of my free time this week getting the Move 4 A Cure shirts and medals shipped out.  The shirts certainly added a time suck factor. It’s worth it though to generate awareness and money for the PCD Foundation. Part of the problem too is I’m a perfectionist.  I probably spend twice as long packing things “just so”.

There’s also the exhaustion that just hits.  There are times I wonder if I have narcolepsy because this wave of exhaustion hits and I feel like I might fall asleep right then and there.  It happened this past Tuesday.  I stayed awake long enough to attend a 10am meeting and then took a 3-hour nap.

It happened again yesterday.  I planned on writing this blog but instead I took a nap.  I’m constantly having to adjust my schedule based on how I feel.  I can wake up early and energetic and then by noon be crashing, or I wake up feeling achy thinking I might be taking the day off but feel fine a few hours later.

It doesn’t seem to be low oxygen level related.  I do check with my pulse oximeter and I’m usually in the 90’s.

There’s a lot to keep up with and for every one thing I accomplish on my to do list there’s always at least two more things added.  I feel like I need to do better with my time management, however that won’t change my 30% lung capacity.  I hope that by setting my priorities and using better time management though I’ll be able to accomplish a little more on my to do list. My priorities are: my health, my husband, my family, my job, Running On Air, housework, and last of all, bathing.

Now excuse me while I go fold the laundry I washed yesterday (before the nap), pay some medical bills and do my 5K for PCD awareness month.  Or maybe my body will decide it needs a nap instead.  We’ll see.

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