Respiratory Distress

911

I have a client in respiratory distress.

I'll put you through to Urgence Santé.

What is the nature of your emergency?

My client is having difficulty breathing due to a lot of secretions. She has ALS.

Pardon?

She has ALS. It's a progressive neurological disease. She can't cough up the secretions and she can't swallow. We're trying to suction her but she's in distress.

Is she conscious?

Yes.

Can she speak?

No. But that's because of the ALS. Her muscles are paralyzed.

We're sending first responders and an ambulance. Do you have a defibrillator on hand?

No, we're in her house.

Does she have asthma?

No, she has ALS. Her respiratory muscles are weakened.

Okay, stay on the line until the ambulance gets there. Don't give her anything to eat or drink.

She's on a feeding tube right now. We'll detach it.

Ten minutes later, a big fire truck pulled up in front and three firemen entered the house and asked the same routine questions as the dispatcher. They meant well but seriously, nobody knows what the fuck ALS is beyond the ice bucket challenge. Same questions with the ambulance technicians but at least they were well-equipped with monitors and oxygen and wheels to transport the patient to hospital.

This all happened yesterday morning, on a day my boss happened to be tagging along on my visits. I'd already warned her this last visit would be emotionally intense but I didn't bank on it being an emergency situation.

It was very, very scary for all of us, but especially terrifying for the client who was absolutely frantic and unable to communicate with us except through panicked eyes as she tried again and again to clear her airway. Any sound coming from her throat was a good sign, even if it was only a deep guttural moan, as it meant she had an airway. But it was on and off because her tears kept gushing and then there'd be even more secretions to clear.

Kudos to everyone present for remaining calm: the worker who took care of the suctioning, the client's husband who sat next to her and held her hand as we waited for help to arrive, my boss for her compassion under the circumstances and all the emergency personnel who showed up and did their best.

If this had happened in a hospital setting, we would have called a code and more than enough qualified people would have shown up "stat" to assess and treat the situation. Eventually there'd be a shift change, then another, and yet another. Home care isn't like that because a lot of times, there's just you and a cell phone. When your shift ends at 4:00 pm, it doesn't mean the clients are okay or that you can flick off a switch in your head and stop worrying about the ones who are more fragile and at risk.

My boss said I handled it well, that I remained calm. But inside I was freaking out. All I wanted to do was bawl. Not because it was an emergency situation and I was scared shitless, but because my client was suffering intensely and there was nothing we could do to help her breathe.

Not surprisingly, I couldn't sleep last night. My client's tears haunt me. The last thing I said to her was that she would be okay, that the hospital would provide relief and help her breathe easier. But as I said those words, in the back of my mind, I hoped they were true.

Because ALS is so much more than the ice bucket challenge.

Floating

“It may be that when we no longer know what to do,
we have come to our real work
and when we no longer know which way to go,
we have begun our real journey.

The mind that is not baffled is not employed.
The impeded stream is the one that sings.”

― Wendell Berry

Last Friday, I was doing passive range of motion exercises with an ALS client, who can still walk but can't talk or hug her grandchildren anymore, when she started to choke on some saliva. Alarmed, I lowered her arm and sat on the bed facing the bath chair where she sat, and waited. When her airway finally cleared and she could breathe again, she lifted her eyes to meet mine and the tears spilled over. 

That brief exchange, the look of absolute despair and suffering in her eyes, was my undoing. While there is nothing wrong with being emotionally present when a client is in distress, it is completely discomfiting when your own reserve crumbles, the pressure of a carefully preserved, protective wall pushing water from sternum to throat, unstoppable as it threatens to erupt in a paroxysm of gulping sobs and snot bubbles.

The above vignette has haunted me all week, through distractions, tasks, and small pleasures. It underlies my days and each time it bubbles to the surface, my throat tightens, my eyes well up and my voice falters once again.

To healthcare workers, caregivers, helpers who empathize for extended periods of time week after month after year, this imbalance/blurring of boundaries/loss of footing is a red flag. Call it compassion fatigue or burn out, the signs and symptoms are real and the cost to one's well being can be devastating and in some cases, permanent.

If you've been experiencing some difficulties yourself, you may consider taking your own inventory. You can take a self test here.

How do I cope? I cling to the moments of grace and humour that, surprisingly, considering the sadness of my job, are ever present in my work week. These are the melodies that emerge from the cracks in the dam (to paraphrase Leonard Cohen's famous quote), and from Wendell Berry's impeded stream. These moments validate, energize, and carry me when I get stuck.

But only so far.

The truth is, what I'd really like to do right now is float for a while. No turbulent waters, no pain and suffering to ease. A little rest stop before continuing my work.

Isn't that the normal thing to do on a journey when you're tired from traveling?

Namasté.

Reckoning

Woke up
Got out of bed
Dragged a comb across my head
Found my way downstairs and drank a cup ...

Not quite. There was no combing this nest. And before I went downstairs I stripped naked in the bathroom to weigh myself for the first time in about four months.

High expectations often yield disappointment. According to what I thought I weighed before we started the whole30, my net loss was 2lbs. Of course, I may have lost more if I weighed more to start with that's something we'll never know and that is a moot point anyway. This eating plan was about healing and health. At least that's what I'm telling myself right now.

The Whole30 bible prepares you for this possible outcome and has  a list of potential benefits other than weight loss as a reminder that good health is so much more than the number on the scale. Here are a few of mine:

The cravings have all gone, at least the physiological ones.

I don't think about food or eating until my body tells me I'm hungry.

I am now able to eat most fruits and vegetables without gastrointestinal distress (my gut is healing but still rejects onions).

I am way more focused/efficient and have ticked off a lot of items on my to-do list since starting.

I have been able to read four books and am on my fifth right now, not to mention there are no chocolatey fingerprints on the pages.

My right shoulder is way less painful and I am able to sleep on that side for longer periods.

I have more energy though not that much more because sleep is still lacking.

I am less irritable ... I think.

Ian woke up a little after me and is down 14lbs and feeling much better overall. We discussed our strategy for day 31 and the plan is to continue with the whole30 and reintroduce some of the foods we haven't been allowed up to now but slowly.

For me, cream is the only thing I'm truly missing. I will delight in adding it to my coffee tomorrow and gauge how I feel the following day or two. Fingers crossed that lactose isn't a problem. The only other item I may indulge in here and there is a glass of wine.

No sugar. For now. Maybe for much longer. It is too powerful, enslaving my body and my mind. It has no nutritional value and the temporary high it provides costs too much in terms of quality of life.

What have I learned after 30 whole days? That I can do this long term. That my body can heal if I feed it the nutrients it needs to function and eliminate what is making it sick. That diet is but one aspect, albeit an important one, to good health with stress management being the other major one, at least for me, and something I need to tackle next.

Speaking of stress management, I got on the treadmill today (walk for two minutes, run for one) for the first time since my back and hip flared up. Fingers crossed that Dr. André doesn't have to undo the damage and that I can continue.

The biggest challenge ahead will be letting go of the number stuck in my head. It's not what you weigh but how you feel that matters most, right?  Well, I'm feeling better and I aim to continue feeling this way.

I'd love to hear your thoughts on feeling healthy if you'd like to share. Has our Whole30 journey made you take stock of your own diet/lifestyle?

Measurements

Last week as I was measuring a client's range of motion, the number ninety-five kept appearing. I wondered if it meant something beyond that the client was clearly doing her exercises. Perhaps I was biased towards that number, unconsciously pushing the limits of the goniometer, or holding back, in order to get the number I wanted.

What's in a number anyway? According to Wikipedia, a number is a mathematical object used to count, measure and label. Subjectively and/or objectively, it has meaning, it has significance, it has value.

For example, a boy I knew briefly in my 20s used to boast nine inches. I vaguely recall checking my meter stick to see what nine inches meant stretched out on a flat surface and being unimpressed. Gross anatomy does that to you as does working with clients who wear johnny gowns all day. Both experiences are great equalizers. To be on the safe side, I studiously avoided accidental glances at his crotch, being unsure if he meant nine inches at rest or during exercise. I was, however, obsessed with proving he had lied about his height. (I could sniff out these white lies having fudged my weight, both out loud and in my head, for a lifetime, all thanks to the magical expanding power of yoga pants. Not only does spandex lift and separate, it also, to this day, keeps my delusions nicely supported.) I'd observe him standing under my hanging plant or reaching into a cupboard and gauge the space between the top of his head and some random reference point then take out that same meter stick once he was gone to validate my suspicions. Sure enough, he was at least two inches shorter than he claimed.

Another man-boy I knew in my 20s confided in me one day that he thought his doody bird was too thin. (Doody bird is an endearing term I learned from my dearly-departed ex-mother-in-law.) How the heck does one even measure that? And for that matter, what do the stats say? While he was distraught over thickness, I was more turned off by the raw spinach that was perpetually stuck between his teeth (I know it was raw because he used to munch on it straight from the bag) not to mention that he drank his tea with two Tetley tea bags seeping in the mug for way past the recommended time, without adding milk.

Then there was Tom, a blind date who neglected to tell me he was 250 lbs overweight, then proceeded to berate my "shallowness" and harass me in a very scary way when I told him there wasn't going to be a second date. That decision had way more to do with his sneaky non-disclosure and subsequent expertise at manipulating his size to guilt you into dating him than the fact that he was hefty, liked Alf and embalmed bodies for a living. This was back in the days before the internet and online dating when there was no way to screen potential dates by lurking/stalking/googling.

All this to say that we sometimes allow measurements to define us, hold us back, keep us stuck, feed our insecurities/obsessions/egos, etc. It's not as if they're going to provide my measurements at time of death the way they do for birth announcements. "We are sad to announce the death of our dear Hobbit friend, weighing in at 110 lbs (yeah, sure) and having shrunk to 4'6" in later years due to bad posture, not enough calcium in her diet and lack of high impact exercise."

In other words, the number that matters to you is not likely to be a major preoccupation with the next person unless you point it out all the time, put it on your business card or write regular blog posts about it. And even then, they're likely to be fixated on their own special number.

Which brings me to the fact that it is day 26 of our Whole30 challenge. If you do the math, we are 13/15th's of the way through. Considering the fact that I did not weigh myself at the beginning, I am surprised to discover myself being overly concerned about what the scale will say on day 30. I have an idea what I want it to read but considering I lie about my weight in my head anyway, does it really matter what it says? Wasn't the initial goal to get healthy versus weighing less. I'm definitely healthier though my sleep hasn't improved and my left hand is still numb and my hair is still galactic and my bloody yoga pants still fit.

One of the absolute pleasures of this eating plan is that there is no measuring, no counting, no weighing of food, unless of course you are following a specific recipe. I can't tell you what a relief this is to someone like me who is obsessive about the bevel mark when measuring yet quite adept at rounding off pounds to the lowest tenth when stepping on the scale.

Stay tuned for Monday's wrap-up when we take stock of the past four weeks, weigh-in ( or not) and plan for reintroduction.

My trusty tape measure.

Two Out Of Three ...

Coffee cream reality check:

And all I can do is keep on telling you
I want you, I need you
But-there ain't no way I'm ever gonna love you
Now don't be sad
'Cause two out of three ain't bad
Now don't be sad
'Cause two out of three ain't bad.

(Meatloaf ... which we're allowed, by the way)

20/30 = 2/3

Two thirds done. Ten days to go. Yeesh. Ten days is obviously a lot longer than ten minutes left on my run. At the ten minute mark, I would be furiously scrolling through my iPod looking for songs to keep me going. Maybe negotiating some sort of reward for making it to the end, like a latte ...

Not that this is going to be over in ten minutes or ten days for that matter. It's a lifestyle.

Two out of three ain't bad, three out of three completes (me).

Coffee cream, I love you.

Hey Nineteen

"Hey Nineteen
No we can't dine together
No we can't eat at all
Please take me along
When you slide on down (the scale)."

I thoroughly dislike the number nineteen and was going to skip an update today but what the hey nineteen.

Ian says there is less of me to hug these days but my theory is he can get a little closer to me now that he's lost weight.

There are lots of advantages to losing weight. Things like spooning versus stacking; being able to see for yourself when your toenails need cutting rather than waiting until you draw blood from your partner; retrieving your low-rise panties from the back of the underwear drawer even though you can't fit in your low-rise jeans yet; and going a whole week without anyone asking when your baby's due.

As for the food, we have been 100% faithful to the whole30 plan. If we can do it, you can do it.

Hey nineteen.

Top Of The Hill

Hullabaloo, day fifteen and half way though. The scream for cream has subsided to a whimper and will hopefully settle there until reintroduction. Insert wistful sigh right about now.

The benefits, at least for me, are emerging slower than the Spring thaw, not quite as stubborn as molasses. A little less bloat, improved gastrointestinal function, clarity of thought at least twice a day, and a rib-spotting earlier this morning.

Ian's data is more scientific: 10lbs lighter (after breakfast and wearing fleece penguin pyjama bottoms, the kind that weigh at least a kilo or two) and an inch and a half less around the middle. I am thrilled to be losing weight vicariously though him. It almost feels as though I've lost weight too.

Almost, not quite.

One thing I have noticed so far is that I cannot skip a meal. No way José. I got into trouble yesterday after eating a late lunch then heading into town to watch a play that Ian's daughter was in.

Right before, we stopped by the Plâteau to pick up some ordered prints from lovely street photographer Mikaël Theimer, who, by the way, has offered to take our "after" photo, then dropped by the Starbucks near the theatre to gulp down some black coffee.

Chugging his café allongé, Ian munched on the organic almonds and dates he brought along but I desisted because almonds make my teeth hurt and dates remind me of large, legless cockroaches. I simply cannot eat anything that looks like it was once alive: no pleading eyes begging for mercy, no hands and feet waving good-bye, and no insect shaped food with or without appendages. The only exception to the latter rule would be rainbow-coloured, fruit flavoured insects made with 100% sugar and food colouring.

Getting back to the play, it totally rocked but by the time I left the theatre I was weak at the knees. Not far from the ground, I know, but still wobbly. Snatching the snack bag from Ian, I closed my eyes and pretended I was eating date squares. It helped briefly but was no replacement for a solid meal. And eating something substantial at midnight wasn't really an option.

Thank goodness for the clocks moving forward. It was the perfect excuse to get up for an earlier breakfast.

Lesson learned. To be fair, two weeks ago sugar ruled. Now I am forced to respond to my body's needs.

I probably won't post about our Whole30 adventure as often from here on in, that is, unless my nine subscribers clamour for more which is highly unlikely considering how slim and trim they all are.

See you on the other side of the hill!

Checking up on an old friend.

A hilarious scene from Alkestis, performed by second year theatre students at Dawson.