Friday, 19 August 2016

invisible or non-existent?

I have a at least two people on my facebook who do not work due to their (self) diagnosis of "invisible disability".  These people always claim it is "like M.S." but "not M.S." as if this validates their claims.

Meanwhile, Bob's at work or volunteering or biking or something.

This morning I had a quick surge of anger as I opened my facebook and saw that one of these women had once again added about 28 photos to her album SUMMER 2016!  So while I work all day - up at 5, office by 7, home at 5 - and have limited energy to enjoy my summer, this woman posts endless pictures of her and her children enjoying their time.

I marvel at the good fortune that one's invisible (non-existent?) disability only impedes their ability to work and not their ability to bike, swim, fish, and play frisbee.   And thank god for the tax dollars I'm generating by my willingness to work!  If not for that, this woman and her similarly-disabled husband might not be able to add photo after photo into their facebook album, showing the world how they are "fighting" their diseases!

How come most people don't fight their disease like Bob does?  By being normal and holding a job and just living his life?

Can we just start being honest about this stuff?  You do not have a disability just because you are too lazy to work.  And this is 2016, folks.  Disabled people go to work.

Thursday, 18 August 2016

pot lights and things we are out of

This week, two of the pot lights in the bathroom needed replacing.  There are five altogether.  The new pot lights are brighter than the first five, and cause an unfamiliar glow in the bathroom.  While I thought it might be nicer, brighter, the bathroom seems more clinical and unwelcoming now.   It has lost it's former ambiance.

Do you remember the Simpson's episode where Homer checks the freezer for ice cream, sees that all the chocolate has been eaten out of the Neapolitan ice cream, and yells, 'Marge!  We need more chocolate, vanilla and strawberry ice cream!"?

That's my life.  Today, as I exited the bedroom with bed head and grogginess, Bob didn't shout good morning, he shouted, "we're almost out of spinach!"  I was happy I was too tired to come up with a witty response that would have prompted more interaction.  I was tired and didn't care about spinach.  We are also out of kale.  And broccoli.  And other interesting vegetables.  We are almost out of meat and almond milk but still have eggs.  Yes, yes, I will do groceries soon.

When I wake up.  When I take stock.  When I am done work and finished cleaning the house and find time between my other necessary errands.

Tuesday, 9 August 2016

nothing good to eat

Is it just me, or is there an ebb and flow to life where it comes to groceries?

It seems to me that at different periods of my life, I have a liked and disliked grocery shopping.  I clearly remember times when I liked to shop, knew what to buy, and enjoyed meal planning.  Now, I'm not sure if it's my age or my work schedule or what, but groceries continually seem like a huge pain in the ass that I just can't make myself do or, when I do, care about.  Last night, I was IN THE STORE, and only bought enough for last night's dinner - and there are schools of thought that this is how we should be shopping, but it was mostly due to me being bored, hot, and tired, and totally not into it.

By the way, I bought food to make nachos.  They were delicious.

Friday, 5 August 2016

the MS Bike Ride

"Fundraising isn't going so well"

This, from my father, after he checked our group site for our MS Bike Ride in two weeks.  We're a bit slow this year - I haven't much biked or fundraised or promoted the whole thing.  In fact, I'm more or less lazy on it and need to get going.  I got my bike back yesterday and rode for a whole 15 minutes - maybe a kilometer or two and then realized I'd have to do 20 times that amount in two weeks.


It's a great event and one I champion - not for the fundraising so much as the collective activity.  In my mind, the province of Ontario funds diseases and cures and therapies quite well - and while the MS Society goes over and above that, I'm still on the fence a bit about fundraising for healthcare when so much of our world does not have access to food, education, health, and micro-finance.  However, it's an amazing event that allows people to work together and "do something" for their friends and family members with MS - I think of my parents and friends who want to somehow lessen the burden of MS on Bob and myself, and how this is a way to come together to somehow make a difference.  I've said "somehow" a lot -- but it's an intangible.  Biking together doesn't solve what we go through, fundraising doesn't either, but there's something about coming together as a community and feeling like we're not alone and that other people care even if they can't actually HELP - that helps us and comforts us.  It's a weird dynamic.

And also a chance to celebrate Bob's courage and strength and spirit as he hand pedals his way through Niagara for 40 clicks and inspires us all.  As the "wife of inspiration" I sometimes feel a little eye-rolly at the whole "bob is our mascot" thing but understand that it's not meant to be as condescending as it often comes across as.

So, wanna donate? ;)

Monday, 1 August 2016

home home home!

This morning he came home.  Hooray.  He had three treatments before they let him go with the promise to connect with the MS Clinic tomorrow morning for advice and direction.  We've written the nurse an email to proceed.

Today was a lovely day of french toast and sausage-potato casserole (Bob's favourites), relaxing on the back deck and playing with the dogs.  I went for a walk and bought new runners, but really there hasn't been much going on.  It was a warm, relaxing day of naps, good food, and happiness at having Bob home again.

Sunday, 31 July 2016

no bounce, baby

So this morning I called the nursing station and heard about my husband's "eventful" night.  Let's just say that he ignored my advice to "play within the rules" and decided to get out of bed, without permission or assistance, and fell.  Good luck convincing the hospital gods to let him come home today now.  He's fine, by the way, with no broken bones or anything.

And after hanging up, I walked into my office and did not see the dog pee until I had already slipped, slided, and smacked down tummy-knees-and-chin first onto the cheap laminate, with a splash.  Seriously?  Nothing like a good morning dunk into dog pee.  I promptly showered.

And now, finishing up my second coffee before heading into another long day.  It's unlikely this boy will be released, which sucks, but is not unexpected.  But then, who knows.

When I texted to ask what I should bring - clothes?  medication?, he texted back with, "latte".  I'm so glad he's taking this seriously.

Saturday, 30 July 2016

memoRies and stuff

Almost four years ago, on September 30th, 2012, the day after I had drinks at Theresa's house with the girls, Bob was hospitalized for a month.  The Friday was one of those nights where I really wanted to go out and even though he seemed really sick and off, Bob encouraged me to go.  And I did.

Thursday, I was out with Theresa again when Bob took ill.  Or not really, as he had already been ill a few days and hadn't quite mentioned it.  Today, Bob was hospitalized again, but there's no way it will be for a month.  He thinks he'll be home tomorrow - I think Tuesday is more likely.  Either way, as long as he's home soon.

MS sucks.  He's got a weird kind of vertigo and has lost some sight in his left eye, and is quite weak.  He'll be fine shortly, but this makes me so sad.  This lovely, wonderful man can't catch a break with this stupid disease.   Argh.. when there are dozens and dozens of assholes who don't deserve to be able-bodied.