Outward Appearances


I began writing this a year ago November, 2018, at the start of my frustration with Fall every year.  It’s become more relevant as we’re now in Spring and dealing with the worldwide pandemic in 2020, so I’ll clean this blog up and release it to the world and we will see if it makes any sense or is just more purging of crap from between my ears.

At the time I began composing this, I was at that point in the Fall / Winter where I couldn’t seem to get out of my own way.  Choking regularly was driving me crazy, and it was especially aggravating when lying down to sleep.

While I still have that problem, the new one – let’s call it the “whistle” – has been added wherein I am waking myself up because I’m struggling to breathe and have developed a “whistle” noise on my exhales that is high pitched enough to get on my last nerve.  It’s not enough that I cut down the trees in the front yard to keep the birds from nesting near my bedroom window and waking me up in Summer.  Nope, now I’m my own bird bringing my own birdy noise with me wherever I may go.  Oh, joy !

Being in the middle of a pandemic, I’m still in the middle of the whole meaning of life thought process, and the fact that I “appear” to be too well to elect euthanasia, yet I have the functional lungs of an 81 year old.  (I know that label sounds silly, but it was on one of my test results, LOL).

At the time I wrote this, I was meeting with my Endocrinologist the prior day, and I was again teary eyed trying to express myself, as this process of living with multiple challenging conditions was and is on my last nerve.  I believe I am healthier 60 lbs over weight, and I think my history tells the truth of that as I put on the weight in Massachusetts and started to have more stable health without hospital runs, and that same factor continued once I moved to California and enjoyed a new lease on life due to the dryer air and lack of routine moisture or change of seasons to help me retain stable health (for me).

I have so many things going on medically that I just don’t give a damn.  I mean – I do care.  Don’t get me wrong, I’m not suicidal, so I do try and stay as well as I am able.  But…  It’s just so much uphill work.  So, this insistence from my Endocrinologist that I lose weight is frustrating and scary to me, as I’ve also watched my Mom battle this disease and lose 35 lbs in 9 days from the struggle to breathe while hospitalized.

Add in the constant choking from congestion, and the nose bleeds from trying to resolve the congestion as my body REALLY doesn’t like the over-the-counter decongestant choices available, and I’m back to being tired.  All. The. Time.  TIRED.

We tried to do a beginner plant walk in the Fall.  Since they invited kids, I thought it would be a gradual climb to 500 feet due to the “beginner” label.

No such luck.  I was tired.  My legs were both stiff from physical therapy sessions following the car accident and like rubber due to zero energy reserves.  And I had to turn back before we’d gone a mile because the hike was straight up hill.  Beginner plant ID efforts – yes.  Beginner walking or hiking on an easy slope – no.

I hate getting all ready to go and having to turn back.  Never mind having an audience to contrast just how physically incapable I am once the blinders and distractions are removed.  I am competitive, even though I know it’s a nonsense effort as we aren’t starting from the same playing field.  I may accept that fact in the front of my brain, and change my efforts accordingly, but when the evidence stares me in the face that I can’t keep up with my friends and peers, it loosens a crazy woman in me, and I hate it.

Absolutely hate it.

I am way too competitive to give in easily when I decide to do something.  I hate my body failing me.  Failing in its duty.  Failing in what should be its general abilities.

But I hate it more when I’m exhausted, and every effort to get some sleep is hampered by choking on phlegm, and having to calm myself or move to a chair to sleep and still be able to breathe without choking.

Which brings me to today’s topic.  Euthanasia.  Again.

As I go through life, hiding my COPD and trying to fill my days with activities that keep me involved in life and give me something hopeful to focus on, I have other friends who are dealing with their own heath issues and fighting to live every day, despite the reality staring them in their faces.

One friend, in her late 80’s, is fighting cancer and trying to continue with her infusion therapy despite coming down with a bad case of cellulitis in her leg.  She can’t walk.  The leg is swollen.  She’s in extreme pain.  But, she’s also terrified that the hospital will stop her cancer infusion treatments, leaving the cancer to again take hold of her body and very painful back and end her life.

Even in extreme pain, she’s looking for a way to survive despite the challenges.  Despite the reality that we never get enough time.  The pandemic has her running scared, frightened that she’s too ill to be allowed into the hospital setting to continue her infusion treatments.  And, being competitive, too, while also fighting for independence despite her frailty.

Part of our conversation when we talked centered around our very different health challenges, and ages, as well as our very different choices in life for how to prepare for the inevitable.   K was telling me that her husband was preparing dinner in the other room, as she could barely walk, and she was frustrated because she couldn’t be as “cheerful” as me.  Seriously?

We had a good gallows humor laugh over that, and exchanged horror stories about how we’d poorly treated the people in our lives at various points (in my case, it was me exhausted after a night of very little sleep and being awoken by the squeaking of the kitchen faucet (worse than nails on a chalkboard to my noise-sensitive ears).  Rolling out of bed after being awoken by the noise, I was up and screaming at the houseguest to quit turning the kitchen faucet on and off while trying to do the dishes when I wasn’t even up for the day – she can’t simply leave the water on so that it’s hot and rinse the dishes, she’d rather rinse them one at a time, conserving the freezing cold water and NOT getting them cleaned).

See?  everyone has their petty moments, and we know some of mine as I’ll admit them in this blog from time to time.  At any rate, in talking to K, I remarked that I’d had 60 years to figure out all my flaws and to practice social distancing so that the ugly side of my personality wasn’t on parade when I wasn’t at my best, and that she has to cut herself some slack and simply try to be nicer next time as she was still new at this game, only having had the cancer diagnosis for a few years.

Yes, it’s gallows humor, but the honesty helps us figure out how to get along when we are not at our best, and the world is on our last nerve…

Success.  Happiness.  Motivation.  Resilience.  All of these things are topics that each of us have to drive from within ourselves, based on the choices that we make for how we want to be in the world despite the challenges that have been handed to each of us.

Whether we have children.  Whether or not we get married.  Entitlement.  Levels of expectation from friendships or family units.  On and on and on…

As I sit here with incontinence issues due to the diabetes medication and the pints and pints of water I’m drinking to stay hydrated (between 70 oz and 110 oz on an average day, or 5 pints), I’m losing patience with the sheer work involved in living.

I go traveling and try to find things to keep me distracted and content, but when I can’t find an open bathroom and have to pee every hour on the hour, it gets old.

When the latest medication, Jardiance, is dehydrating me so that I’m drinking lots and lots of water all day long including before bedtime, I’m out of patience.  I’m exhausted and cranky, despite my outward moments of success.  I was already operated on once to help control my muscles and keep me from peeing myself.

I remember that surgery vividly, as I was about 5 years old, and they tied me to the bed for days to keep me from pulling the catheter out, it was so aggravating.  So, more surgery to repair yet another aggravation?  No way.  My cousin, T, may be considering it, as the incontinence problem runs in the women in our family…  However, this is the same woman who has had 21+ surgeries on her leg to keep from losing it due to infections and bone disintegration following a broken ankle in 2009.  I’m just not that kind of medical warrior.

At this point, I’m up multiple times a night to pee, AND I’m finding that I didn’t always move fast enough (thank heavens for pads!) so I have to change my underwear and PJ bottoms on a regular basis in the middle of the night.  The pain / frozen small of my back makes it particularly challenging to move quickly after last years car accident, adding yet another joy to my evening routine when battling a full bladder.  Trust me, ain’t nobody got enough time for this kind of drama and laundry !

So, I tell you all that to tell you this.  I’m pretty good at hiding my illness and keeping up outward appearances to give the facsimile of being well.  Until you have a competitive houseguest who is watching every thing you do or don’t do and keeping score…  Until you can’t find a bathroom when out and about because all restaurants and most stores are closed.

I’m pretty good at giving the appearance of being out and about and active, until plants remain in my yard for days at a time because my energy was wiped out by the sheer act of shopping, or while plant thieving, and I have zero energy left over to actually get them into the ground in a timely manner within a day or two.

I’m pretty good at giving the appearance of ability, until boxes moved onto my porch or into my driveway for sorting through and disposal / recycling / donation remain there for months at a time, giving lie to my outward appearances by not being addressed in a timely manner.

Nobody wants to be seen as “less”.  Less capable.  Less active.  Less able.  Less independent.

So, I’ll keep lying my head off through my outward appearance of passing for normal, and hope that no one will look behind the curtain to see just how exhausted I am trying to keep up most of my outward abilities to pass for normal and capable.

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