Sunday, January 05, 2014

Chronic Illness: Parents Part II

So this is actually the blog entry that's been rolling around in my head for the last, oh, six months since Bridget was diagnosed with her Funky Lungs.  That's the official name: Funky Lungs.  And her official cure? Coughing massive amounts of phlegm up into her mouth.  I saw it Thursday night.  It was gross.  Really gross.  But she immediately went to 100% oxygen saturation while on room air.  She had never hit 100% on any amount of oxygen support during this trip to the hospital.  I also finally got to see (up close and personal!!!) the crap clogging up her lungs when she gets her Funky Lungs.

So back to me.  This feels like a selfish and highly vulnerable blog entry.  It's about the effects of Bridget's ongoing and long term Chronic (but not Critical) illness on me and, well, my career.  Yes, Dave is affected, too, but he needs to write his own blog to process through his Midwestern emotions.  Both of them.

So what's the scoop? First, and strangest for someone who always honors commitments, everything is tentative.  Sure, we'd love to come over to dinner (as long as Bridget isn't in the hospital).  Sure, I can go to that academic conference (as long as Bridget isn't in the hospital).  Sure we can host a big party at our house (as long as Bridget isn't in the hospital). Sure we can have our regular lab meeting on Friday (as long as Bridget isn't in the hospital).

Yes, she's only been in the hospital 3 times last year (8, 10, and 6 days each), but there have been at least other 4 respiratory incidents that we were worried she might have to go back in.  Plus, for each hospital visit, she was sick about 5 to 7 days before.  Then there are the visits to the multiple doctors to see how she is doing afterward and how we should tweak our treatment protocol. Regular colds are two weeks of time spent worrying.  Hospital visits take around a month.  I'll do the math for you:  we've had about 6 weeks since April where life was "the old normal."

So tentative.  Everything.  And for the previous 40 something years in my life, deadlines were deadlines and they were hard. Commitments meant I would do what I said.  Now there's an asterisk to much of what I say I can do.

Similarly, I am behind on most of my research and teaching prep.  In the hospital, I can get up at 4 am and get some things done.  But then around 2 pm, I. Am. Done.  And Bridget doesn't willingly take naps anymore.  So I spend a few hours lying in the hospital bed while Bridget lovingly (to her) touches my face and asks me when I'm going to get up.  At home, I try to stay on a normal schedule, but checking her stats throughout the night don't make for a restful night's sleep. Hypervigilance, doncha you know.

And I've gained back nearly all the weight I lost last year, mainly because it takes me a while to recover from her hospital visits.  And by "recover" I mean drink wine and sleep longer.  Neither of those are good for running 1 hour early in the morning.

Finally, and most annoying, I don't have a lot of interest or energy for all the things that used to be so much fun.  Knitting, sewing, and gardening still sound appealing and exciting, but in a distant and remote way.  If I have a few hours free, I'm more likely to take a nap than finish up that sweater I started last April (when I was at a different weight and wouldn't fit now anyway).

So the things that make me feel good about myself:  exercise, teaching/mentoring, working on my research, and my fun stuff have all taken very big hits since Bridget's diagnosis.  I really don't give a crap about cleaning, so there's no "hit" there.  I just live in an exceptionally messy house.

And I don't know when it's going to change.  The big realization from this last hospital trip is that Bridget IS going back to the hospital. Our treatment protocol made massive improvements in her condition.  But she will still need oxygen support at some point in the future.  We're going to start prednisone earlier next time.  And I am (for the first time) enthusiastic about doing that.  But I'm not convinced that with another bad virus, it will still keep her off oxygen support and at best 4 or 5 days in the hospital.

And I want to stress again, Bridget has a chronic illness that is not life threatening.  My brain and my heart cannot even fathom adding in those emotional factors into the equation.  As one Mom in the chronic/critical illness club once told me: "You don't get to quit.  You don't get to sit down on the sidewalk and say I'm done with this. Somebody else take over."

So I guess we just figure it out, eh?  Important: sleep.  Not important:  Clean.  Need to figure out:  exercise, work, hobbies probably in that order for my mental health.

1 comment:

Carroll said...

Geez, Anita. I'm finally getting around to reading about all this. That oath you uttered seems ENTIRELY warranted -- an understatement, even.

Chronic, but not life-threatening, but Plan A is dash straight to the hospital if X,Y,or Z happen to manifest? Aieeee!

I know you know in your heart of hearts that "this too shall pass", but I saw something yesterday that really seems to resonate with your situation. Those people who blithely tell parents of young children "It goes by so fast!"... Oh HAH -- who do they think they are kidding?! Almost any given day in your life this past year has probably seemed like a year unto itself.

Good for you for being able to get this all down "on paper" the way you've done here. And it does not surprise me at all that you are willing to "mentor" forthcoming club members in your unlucky elite cadre.

Hang in there, my friend. Sure wish we lived close enough for me to be something more than just moral support from afar!