the day shifts, slightly
and boring becomes busy
and i, stop to watch


I'm a big fan of conversation.  The ebbs and flows of storytelling and understanding, often shared over a meal or at an event.  The bustle of things around you - the questions and answers not always lining up in a chronological order as folks on either side of the table or conversation enter into and leave the conversation.  Friday night was like that - glasses of wine and french food, lobbying questions and answers across a blue plaid table cloth, laughter and interruption and correction.

And then yesterday's conversation - spoken slowly to account for language barriers and children running around.  Sipping coffee in the afternoon, smiling at the achievements, and making plans for further steps.

I have two people on my facebook - well, one I unfriended and one I unfollowed - who are borderline famous.   The unfriended one is someone I find oppressively shameless and shallow, but who some of my friends find insightful and adventurous.  The one I unfollowed is someone I previously worked with - who is starting to believe her own hype and who traded her authenticity for get rich quick schemes and hashtag mentions by other famous-for-no-purpose people.

I know, I'm harsh.  But sometimes you just want to scream "are you even buying what you're selling?"

we danced, he and I
music that left us too soon
memories remain


Is it possible to be attracted to someone because of the way they deal cards?

Weird question, right?

Obviously, it's not all about the deal - it's a perception of confidence, sociability, and something more interesting underneath the surface.  It was a strange moment, I'll give you that, when I noticed.  Initially I shrugged it off, as a noticing, and forgot about it. Until I saw him deal again and had the same thought and wondered, "is this weird?"

And then a really strange interaction with another player that I've yet to fully process - but it goes something like this:

1. Person sees me with my disabled husband - he's bundled up and I'm pushing his wheelchair and they initially feel sorry for me, or him, and assumptions are made
2. Person meets and interacts with my husband and realizes that he's pretty freaking fantastic and just not "some rando in a wheelchair that she's taking care of"
3. Person tells me about meeting my husband in some sort of daze - like post-first-date-puppy-love, like they need to tell me they get it
4. Person unintentionally preens and measures up against my husband

So strange.   I once had a similar reaction to disabled people - when we started with wheelchair basketball I was shocked that the players were assholes and said mean things to one another - I had thought all disabled people were fragile and nice and .. not human?

two shots espresso
my old mug is coffee stained
with happier times


It's dark in the mornings now.  I'm sitting in my office, one double americano under my belt (belt of my robe, folks, I'm working from home!), dogs laying by my feet, and Alexa giving me my needed facts before starting my day.

I went away on the weekend - drove 90 minutes north and visited an old friend for the evening.  Wine, food, walks, and silly games - we unpacked our lives and reconnected beside a river with a fast current.   I slept soundly before driving home.    I also had a personal day last week - after realizing I was so stressed I could barely think.  It was like my baseline got too high.

Even Monday, I found it hard to talk without crying.   Weird, after relaxing with a friend and unpacking some of my stress.  Between what's happening with my husband and with my brother, I seem to be fresh out of coping skills.  Being honest, I have neglected meditation and fully embraced alcoholism and sleep.  It looks suspiciously like depression, but who's got time for that?

In all seriousness, I feel good this morning.   Positive, optomistic, unafraid.  It's not even seven and I've been up for over an hour and have made breakfasts, lunches, and coffees while taking care of the dogs, writing email, and starting laundry.  I don't feel overwhelmed, but I haven't interacted with anyone besides Bob and his PSW.  And both are lovely.

It's also the kindness we've received over the last few days.  We problem solved, my friend and I, how we might bring Bob up to the cottage.  And then yesterday someone paid for my coffee in the drive thru - a small surprise that brought me to tears and threatened to ruin my make up before 7 a.m.  And then last night, after telling our friends that we can no longer join them for the potluck before our annual trip to the Panto (although we'd meet them at the Panto), our friends decided to build a ramp to the house we all meet at so Bob could get in.   

Sometimes, kindness opens the door just a crack and it doesn't feel so dark inside.

Exhausted, she fell
and just laid there, quietly
watching the world pass



So I took off today as a personal day.  I had breakfast with friends and came home, my blood still pumping in my ears.  In the quiet of the house with nothing to do, I could feel it and hear it.  I wondered, "how long has this been my normal?" 

The dogs run in the snow.  I'm paying bills.  I"m going to the mall to buy a shower gift and find a hat I like and pick up my ring.  I haven't showered or done by hair today.  It's the Oshawa Mall.

I almost started crying today.  Wondering how much more I can take and how bad it will be before I can't do anymore.  And how long before my work suffers and I stop over-preforming to keep my mind from worrying about the future.  I have debated stress leave but don't want to be alone day in and day out with my worry.  At least work gives me some distraction.

To the mall I go.  Alone in a crowd.  Wearing off-brand yoga pants with my unclean hair and body-by-bonbon.  Fuck.  I'm a hot mess.

momentarilly
i breathe, and then step back in
superhero's cape


MS is terrible.  The worst, actually.  No, that's not true.  I'd rather this than a handful of other diseases - ALS, for sure.  Some types of cancer.  Alzheimers.  I'm sure there's more.   

For a long time, we did MS really well.  He was biking to work 13 years ago.  We were camping.  Traveling the world.  We still do that - travel - but it's different now.  Somewhat sadder, maybe - a continuous reminder of what we'd be doing "if we could".   We did Prague and northen Europe, Puerto Rico, and South Africa in a wheelchair.   Those were the good days.

This year we did a cruise around Italy and Croatia - a bucket list item for me.  It was gorgeous and was moving - but just a bit short of my (our) dreams.  I'm not complaining - just saying.  It was around the time that things were getting worse.

Today kinda sucks.  It's a "worse" day.  Normal days are laundry for the bed pads or his pants, more housekeeping than emergency.  Great days are no laundry days.  Worse days are more laundry or different laundry.  The days where you take a moment and wonder if you've hit the worst yet, or if there's more to come, and what the hell are we going to do?

I think of Grand Canyon in June - his bucket list item.  And me finding a wheelchair cabin, and a flight, and making plans.  And then I think of this morning and think, "that's probably not going to happen" - and wonder how long I have to fake it until I make it.  Do I cancel the trip now, and not waste money?  Do I keep it a while longer, hoping we get ourselves sorted?  I don't know.  No one knows.

asking the question
bravery in syllables
do i want to know?

Last night we were exhausted.  As we were catching up on "this is us", Bob was sitting in his wheelchair, with a long sleeve shirt and a blanket over his legs.   I looked up about half way through a show, and saw that my husband was naked from the waist down - his blanket now on the floor, a snoring little hound dog having made it their bed. 

I pretended I didn't notice.

Wondered about all this laundry.  What the future looks like.  Glanced at my converse-clad feet and was glad to have them up and resting.  That laundry, though.  I guess that's today's problem.

my life, disarray -
patio furniture, out -
and getting snowed on.


An update:

1.  The PSW issue was solved by recording the start times on the calendar, and what they did or didn't do.  The PSW in question reads our calendar and course corrected.

2.  Two of our PSWs switched to another office (our local one has unionized and is threatening to strike) and now Bob's 6 a.m. time slot is in jeopardy. 

3.  I've decided to let Bob go back on THC and just deal with it.

4.  Fridge is fixed and running again.

5.  I'm dealing with some weird emotional stuff.  My brother has cancer and it's bringing up some internal turmoil I didn't expect.  He's got a great attitude and a great prognosis - which maybe is the problem?  I feel jealous that he's got an end to his ordeal and I do not.  How messed up is that?

the wreckoning comes
in a storm or gentle breeze
i'm caught, unaware


Alright, so this blog is becoming a black hole for my stress.  Feel free to stop reading; I will promise you that I will try to be little-miss-sunshine about my shitty life soon - I'm just not feeling it this day/month/year.

No good calls start with, "hey, Chrissy".    It's a strange thing, when you're not even 50 and your world is beginning to unravel - literally and physically, the cupboard doors are coming off in my hands and the fridge has stopped working.  Yes - literally and physically - I can have these repaired, but nothing is as strong as it used to be and we're all inching toward destruction. 

Fuck ;)

collapsing into
a cloud of my built up stress
feels like giving up

Fuck.

Don't swear, I'm told.  Really?  Let me describe my Sunday:   I woke up to realize my fridge was dead - the realization hit slow and then hard - panicking to figure out what I could save and not save.  I rushed Bob through his care - hoping to have him up and dressed before a repair person came - and he ended up falling and hitting his head against the wall.  The repair person was late - my son-in-law's parents lent me a beer fridge and cooler.  The repair guy delivered bad news - 400+ for a motherboard and a few days of living out of a beer fridge and cooler.  Relieved, I was putting away the dishes when the cupboard door came off in my hand.

Fuck.

Today, the repair guy is coming to fix the fridge, the cupboard door is still leaning against the lower cabinets, I'm knee deep in preparing for a class I'm delivering on Friday and my husband's goose-egg has gone down.

I can hear my pulse in my ears. 

Fuck.

arguments ensue
who has the most consequence
for our decision?


Living with MS is not easy.

Today's argument is cannabis.  I'm adamently against.  It stinks, it affects Bob being "fit for service", it shows on urine tests.  And while Bob argues that I'm a drug-snob and I say I am not, I will confess to some feelings on this being totally low-end.  Bob is for.  He's smoked recreationally and likes chilling out.  His legs feel better. 

Did I mention he gets paranoia and it's unbearable to deal with?  And that it stinks?  And that he could lose his job?

But who has the most to lose, here?  Yes, it's his disease and he should get to choose how he treats it - but this is my life, too, and I hate the smell, hate the paranoia, and hate worrying about the consequences.  Tonight, he threatened that if I didn't let him smoke again he'd start using opiods. 

And this is where his judgement starts.  Not a lot to lose, quite frankly.

I hate MS.