sitting alone, I

remember this solitude

is good for my soul

It's been a brutal week and I'm still recovering.   Bob's on a new med for his depression - we changed it to remove some side effects of the original one and to get some benefit from this med's side effects.  He's now taking a medication at bedtime that has a side effect of tiredness - as he was having some difficulty sleeping.

And is my luck - it works.  It worked to the point where Bob is now not waking up to pee - and I'm changing the bed and doing laundry fairly steadily.  He's also groggy in the morning with difficulty enunciating, and a bit grumpy until at least mid-morning.

Help with sleeping is okay - knocking him out cold each and every night to the point where he is unaware he's peeing the bed and can't talk in the morning - not so great.  

I'm headed out for a walk, soon.  I'm a bit overwhelmed by life, still, and feel better outdoors.

i cannot handle
another thing going wrong
my heart is pounding


So.  It's been a terrible week.  Bob's appointments basically distilled down to one message:  he shouldn't be working and it's time to focus on his health - mentally and physically.  I'm hoping he hears this and does it.  I'm exhausted dealing with all of this while he putters through his work day like nothing's wrong.  His mental health is not great, he's torn his rotator cuff, and his range of motion is deteriorating quickly.  The final word:  take 3-6 months, if not forever, and do mindfulness training, physical therapy, and find something to do that you love.

And then my dog died.  We have three - it was my favourite.  Cancer - ruptured tumour - nothing we can do.  A terrible shock that I'm done reliving and just want to forget.

Yesterday, we picked up my husband's sister for a weekend visit.  She's lovely and it's a nice top to the week.  In Florida, Bob's brother and mother were going to visit with our son - the mentally ill homeless one who is currently "hobo camping" in Tampa.  We suggested that Bob's brother assess if his son needed anything and buy it for him, and we'd pay him back.  Our guidelines were:  toiletries, clothes, phone cards, groceries, be reasonable, nothing fencible.

Last night, we got the bill:  $400 US.  His brother got our homeless, mentally ill, drug using child:  a new phone, a new phone plan, clothes, toiletries, dog food, smokes, and other bullshit stuff.  Almost all of it fencible, an extra $40 in cash, and he also included the bill for the boy's lunch.

I'm so over the fucking rails angry.   And then had to listen to what a great visit he was but how worried grandma is about him.  YOU THINK?  All lunches are fucking amazing when there is $400 worth of crap, cash, and free lunch - and you'd be a fucking idiot not to worry about some hobo you barely know now having $400 worth of crap to fence, and some actual cash - as he heads into a punk music festival stoned and mentally ill.

Argh.  Can something please go right?

19 years ago
a first date filled with laughter
that's not a sports car!

19 years ago we had our first date.  After months of talking on the phone and writing emails to one another, we met at an Ikea to wander around and see if there was chemistry or not.  It was my first time, probably, in an Ikea but he needed a cheap bed (he'd been using a futon).   We decided to go play pool, and then decided to have some food at East Side Marios.  Not an especially noteworthy beginning.

We met again six days later and within a few weeks were dating. 

He was walking, then.  And I knew about his MS.  At that time, he'd been diagnosed for almost 4 years officially and 9 years in theory.  I trained as a nurse, so knew what I was facing. 

Today, we have medical appointments.  One at Sunnybrook to address the incident after Christmas, and another in Oshawa to see if we can do something about his pain and spasms in his legs.  But before we start the clinical aspect of our day, we'll have breakfast together.  We will laugh, look back on our relationship, and take a moment to be husband and wife again - before heading into a day of clinical assessments and me as his caregiver.

I don't regret anything.  It makes me sad, how things have progressed in the last few years - but that does not take away from how much we love one another.   Seems funny that we've been together for 19 years.. I barely remember myself without him. 

i wish i could sleep

fading in and out of dreams

my spirit at rest

Skidding towards excellence.  My theme as I hurl towards 50.  

First step:  nutrition and hydration.    

Last June, right after getting my immunization for my Kenya trip, I became violently ill at work.  Sparing the details, I will tell you that I was vomiting and that the last meal I had had before that was a breakfast shake.  Post-illness, I could not make myself a shake without my mouth souring - and I went back to bagels or toast or other alternatives.  This led to me starting to not eat right again - carbs for breakfast are not particular filling, leading to more eating during the day, or unwise choices, *yadda yadda yadda* and here we are.

Called a nutritionist through my EAP - and even before speaking to her, through the endless forms and documents one fills out, I realized I needed to start doing a few things:

• Hydrate.  Minimum 1.5 litres a day, goal 2 litres a day.  Found a stainless steel, strawed, attractive metal cup - 2 full is just under 1.5, and 3 full is just over 2.  Perfect.  I also resumed my practice of no coffee or breakfast until I had drank at least 24 ounces of water.  

• Document.  For whatever reason, I choose better foods to eat when I'm documenting it.

• Protein Shakes.  Breakfast of champions - almond milk, spinach, 1/2 banana, small spoon of peanut butter, and a half spoon of Vega protein and green.  Under 300 calories, tastes good, and keeps me full.

• Vegetarian options.  Both for the environment and for me - a further reduction in meat.  Including one or two meat-free nights a week.

• Eating in.  My husband hates this. He loves eating out.  It's his favourite.  So this means work for me, because I have to be offering more than your typical casserole to hold his attention away from whatever restaurant he's currently interested in.

exhausted, i crash
into a fitful sleep, where
dreams evade me, still


I've been up for a half hour.  In that half hour, I have put Bob in his shower chair, put the dogs out, fed the dogs, made coffee, made Bob's lunch, washed the dishes, moved the christmas decorations downstairs, and opened up my computer. 

It's been strained here at home the last few weeks.  Ever since Christmas, with the blow back from Bob's issue with his medication - I've just been - hollow. 

Everyone praises my husband - so brave, so stubborn, so defiant of his limitations.  So amazing he still works, still faces down his disease, has a life and travels.  For pete's sake, I feel the same, most days.  He's amazing.  But no one praises me.  The one who wakes up early so that I can get him ready for his nurse who gets him ready for work.  Who makes all his meals.  Who orders and picks up his blister packs.  Who arranges my schedule to accomodate him.  Who goes to value village to find the right carrier for under his wheelchair so he can bring the right medical aids to work, unseen.  Who does laundry before she leaves for work and laundry when she is making dinner, because he works 8 hours a day and can't always transfer well in the washroom.  Who calls pre-emptively to restaurants to ensure they're wheelchair friendly, who books friends and events, who has to get someone to stay here with him when I need a break, who takes off work for all his appointments, who gets talked to like shit when he's frustrated that his MS steals all the joy.  Who gets him in and out of the car, who finds parking, who pushes him up streets, who has her meals interrupted to take him to the washroom - so that you all can say how amazing he is for showing up for a dinner party.

The one who has had her marriage - her wonderful, equal, spirited marriage - reduced to caregiving and administrative tasks.  Who sees her husband giving his best to work, and trying to live his best life, while mine dwindles away.

A little woe is me, this post.  I'm sorry for that.  January blahs, or another readjustment to my life.  I miss what I had so much these last few weeks - and I feel a little melancholic that all that I loved about my marriage is slipping away.  He's still here - and I adore him - but I feel, some days, that I'm tapdancing through a musical without the orchestra to support.

another decade,
or year, of my faltering
hands out on dark walls

Skidding towards excellence - that's my theme for the next 15 months. 

It's been an entirely spastic season - highs and lows.  The highs of a gorgeous green christmas and family and friends huddled together alongside of the lows of medical and mental issues. 

I sometimes sit in my front room, staring out at the road, and wondering if I have energy to walk another year or more of it.  Of how much more I'll have to shoulder before I get to rest.   Of how long I can pour out of an empty cup.