up, but not at 'em

the day stretches out ahead

I am exhausted

My night went like this:  in bed around 9, asleep around 10.  The promise of a good seven or eight hours of sleep shattered at 11:48 when Bob calls for me, he needed to use the toilet.  Half in the dark, I put him in his sling, used the lift, put him on the toilet.  I laid down in bed and fell back into a doze, until he called again, finished.  Cleaned him up, thankful that he woke and that I didn't have to clean up a bed, and reverse engineered him back into bed.  

And I went back to bed, until just after 2, when he dropped his urinal on the floor.  Full, of course.  

And now, at nearly 7 in the morning - I've been up for an hour - dishes done, laundry folded, coffee made - Bob is getting ready with his PSW and is grumpy.  I went to help and he's argumentative and defensive and it's because he didn't sleep well.  

Seriously? 

I get it.  MS sucks.  And he's upset about last night.  But I'm trying my hardest to have a good attitude and clean up the floor and him and the house and not have it smell like an old age home, and he's grumpy and unfriendly with me.  I seriously feel like having a shower, getting dressed, and telling him to go fuck himself.

But I won't.  I'll blog.  I'll meditate and deep breathe and start my day and understand that this stupid disease is the enemy and not him.

 runaway wifey

heading toward the spa, friends

bathing suit is packed!

I'm sitting at my desk, waiting for my friend to get here.  I'm dressed, packed, and listening to ska.  I forgot how much I love ska.  Well, I didn't forget - or I wouldn't have asked alexa to play me some ska. But when I listen to it, I guess I remember how MUCH I love ska.  The energy, the fun, the dixieland feel of it all.

Funny how much work it is to go away overnight when your husband is disabled.

 bougie mom decor

a crate, some storage baskets

re-design my space

My daughter said I was entering the realm of bougie mom yesterday, after I went across town to pick up a used crate to store my living room blankets.  I've redone all the floors on the main level, and with that came some re-design of furniture and room space, some downsizing, and a new look in some of the rooms.  Bob's room, the room we technically share but seldom do - is more spacious now with my dresser gone.  It allows for his medical stuff to be stored and neat, and some room for the PSWs to move as they get him ready.

My room - the technical spare room but the one I spend more time in, got flipped.  Used to be a room where the bed was the main focus and now it's set up like a bright reading area that happens to have a bed.  Well lit with a rocking chair and reading blanket.  

The office - used to be mine but now Bob's - is just a desk, a rocking chair, and a plant stand.  Clean, quiet, utility-focused.  The living and dining area were redone - couch moved, dining table had the extenders removed for a round look, the baker's rack that used to be a dust collector and book shelf in the office moved back to the dining area for a wine rack and storage - baskets, bins, and the odd decor item on it.  

All doors have organizers.  Most closets do.  It's cleaner.  Homier.  Warmer.  Functional.

And speaking of functional - yesterday I worked all day, did errands (the crate, groceries, post office), filled out my DNA test and mailed it, made a good dinner, made a peanut butter pie, did a zoom call with my niece, and still managed to be in bed before ten.  A good day.

 asleep, the world waits

sheets cold and bodies warm, I 

make it wait longer.

I slept in my husband's bed last night - first time since our vacation in September.  I forgot how much I miss this connection.  And, pleasantly, it was a good night and I was able to sleep - no mishaps or loud snoring or any MS-related-issues.

Yesterday, our HR department sent out a request for us to share one or two words that outline what we are most proud of since the pandemic began.  I can think of things I'm thankful for, things I'm grateful for, but am really struggling to give an honest answer about things I am proud of.

The plague wasn't that bad for me.  I stopped commuting, my husband's career ended it's medical stall, we both work from home and have found a  nice rhythm there.  I walk almost every day - with the dog, with friends, or with Bob.  I take photos and write haiku.  I have saved so much money - all while doing some house repairs.  I've bought shoes.  I've learned to bake bread.  I've painted bricks.  I've checked in with friends.  

And as I write this, I know what I'll respond with.  Being there.  I was able to be there this year for friends struggling with mental health, for some lonely folks, and for a dear friend that lost her oldest child.  I'm probably more thankful I was there, but proud that in this midst of chaos and challenges I could be there for other people - even where I volunteer.   It's also what kept me mentally well, I think.

 anger, resentment

a soup boiling on the stove

the pot, not in charge

It's not even 8 a.m. and I'm already annoyed with my husband.    We had a conference last night with old friends of his from high school and university, celebrating someone's 50th.  He's been pissy ever since.  What it essentially boils down to is him being incredibly upset that their lives are continuing and his is not.

And mine, I suppose.

So that's fun.  They all get to smile and talk about seeing Bob, and I get this moody person roaming my halls.  Gone is the good natured man I fell in love with and married and raised children with.  Gone is the joking, the smiles, and the joy.  He's had so much ripped away - his walking, his cycling, his driving, his traveling - that he just no longer faces the world with the joy I used to know and count on.

So it's just me, alone in this house.  Remembering who he was.  Grieving him while he's still here.  

 the house, unmoving

silence envelops hall, mood

waiting for some light

I have all the glamour jobs.  My alarm goes off at 6:30 and I let out the dogs and use the washroom.  Wake up Bob, turn on the lights.  Unlock the door.  By 6:40 I'm usually in his room and putting him in the sling to use the lift so that he can sit on the toilet for a few minutes.  We're attempting to "bowel train" him - MS affects everything, these days.

Once I have him balanced, it's time to chore.  Laundry, if it's there.  Dishes, if they need to be washed or put away.  Coffee to be made and brought.  Today, I had to stand and hold his coffee while adjusted his core - the laundry and my coffee waiting in another room.  Strip his bed, if needed.  Lay out clothes, on days it matters what he wears.  Turn on my computer - so that once his PSW arrives I can check my own email or blog.

He arrives.  I hear him move Bob to the shower chair and run the water.  Where is the soap?  Razor?  I answer, trying to keep my annoyance to a minimum.  Where they always are, the closet.  I sip my coffee and ignore them move to the living room for the wheelchair, the bedroom to get dressed, back to the living room for shoulder exercises.  The bed is made - exactly like a rushed 50 something guy would make it.  The shake is made in a similar fashion.  Bob's dressed - sometimes like an aging gentleman in a nursing home, sometimes like the athlete he used to be.  I try not to show any visible registration of what I think of these outfits.  

I sift through emails, answering, filing, creating meetings, while mentally planning my day and along with it my outfit.  His PSW has been here for 36 minutes already - almost time for him to go and me to shower.  He was showing off yesterday that he can do his 10 hours of patient care in just over 6 hours, not realizing that I understand that he's rushing and is likely not giving Bob the care he deserves.  But Bob is young and has me, so I try not to register the admission of neglegence.  

Momentarily called away - there was a near miss that I had to assist with, my husband dangling from his wheelchair, pants around his thighs.  There is no dignity left in this place but he didn't get hurt.  There's always that.

Last night I fell asleep wondering how long we could go on like this for and how empty my days might be once we are done.

 the fire place is on

an early autumn morning 

colourful trees, watch.

Monday morning.  The fire is on and out my winder I can see colourful autumn trees slowly losing their leaves.  Winter is coming - but before the first snow it always feels romatic and relaxing, let settling into a good book with a cup of cider beside me.

Right now, though, I'm sipping coffee.  Looking at my schedule, I wish I could sleep instead of getting up and prepping for a crazy morning of meetings.  

I'm still grieving.  It's challenging saying no all the time.  No, we can't buy a cottage.  No, we can't buy a place for winters.  No, we can't fly.  I know he's clinging to the semblance of normalcy and hoping to check a few more items off his bucket list, butI feel like I need to wind down - accept that we cannot travel anymore, accept that he's too far advanced, and stop feeling guilty that I don't want to use this last bit of time by lugging around medical equipment and being lonely.

I feel horrible, truth be told.  He wants a place for warmer winters - and all I see is work.  Needing to buy equipment, needing to hire PSWs in another country.  Being away from my support circle.  Seeing no one but him, alone in another country, potentially no vehicle.

We have compromised - if Joe wins the election, I'll entertain buying a condo somewhere on the lower east coast that's warmer and driveable.  If not, he may be stuck here.   I'll buy wine.  He'll be fine.