life, writing

Bathroom Renovation: Part 1 – It’s a Go!

At the end of February, it will be ten years since we moved into our house. We have been oh so responsible in dealing with the renovations, starting with the very unsexy updates of new gutters, roof and windows. Having three kids and both of us being allergic to debt means we’ve taken things slowly.

Previous owners did some updates in the 90s – sadly, they had a love affair with brass – and a fresh coat of paint before it went on the market made it a nicer house than we ever thought we could afford. Our starter home was a 2 bedroom, 1 bath that we updated ourselves, adding two bedrooms within it’s very small footprint.

We called this house, just a few blocks over, our starter house on steroids. 💪🏻💪🏻💪🏻

But this is where it gets disgusting. The previous residents were college boys, so you can imagine that maintenance and cleanliness were not of paramount importance. If you own a jacuzzi tub, you know that it requires regular use and cleaning. Otherwise, a whole new world starts to colonize the pipes.

Our old house had a tiny blue bathtub, so I was excited to have a deep soaking tub with jets. But there was no way in hell I was getting in without a decent cleaning.

I had no idea what I was in for.

The sludge that oozed out of the pipes the first time I turned on the jets was reminiscent of the black slime of childhood nightmares. Chunky, glutinous snakes, hibernating and growing for years, spurted into the tub like ogre vomit, over and over again. I had to empty it in buckets so it wouldn’t clog the drain.

My sensitive stomach had an intense workout as I repeated the process 47 times. That may be a slight exaggeration, but not by much. I ran those jets with bleach several times a day for weeks before I could bring myself to get into that tub. Even then, I had to NOT think about it very carefully to be able to relax and enjoy a soak.

MS fatigue and the neck injury that causes me crazy pain and headaches made me overpower my squeamishness and revel in the comfort of Epsom salt baths. Until the damn thing started to leak – in the opposite corner of the house. Water started dripping down through a pot light in the basement.

Awesome.

That was three or four years ago. Luckily it was only the tub that leaked, not the shower. Those slimy snakes must have been so big, they damaged the pipes. Ugh.

For the past couple of years, we’ve tried to find someone that would take on the renovation the way we wanted it to go. Meaning, a separate tub and shower fitting into a minuscule space. Strangely, not one of the six contractors we had in, wanted to take on the job. It may have to do with the fact that we’re not prepared to spend obscene amounts of money to make it happen. So, we’re replacing the current fixtures and calling it good.

Having to clean the tub before having a bath is a first world problem.

So, we hired a designer to deal with the project and I just got word that we’re starting this week. Yeehaw! I love me some demo, so I already started removing some tiles. Years ago, I replaced the sad brass light fixtures and faucets.

A tip for new homeowners: the savings you get from the ‘big box stores’, is not worth it when it comes to quality. They may carry the the same brand names but it’s like buying your fixtures at the dollar store. Renovations cost a lot, time-wise and money-wise. Spend your money wisely and buy quality.

BEFORE PHOTOS

Goodbye brass! The final frontier… Soooo ugly!!!

Hopefully once they get started, it won’t take too long to put things back together. We all know how that goes, though. Fingers crossed for quick and on budget – no surprises. 🤞🏻🤞🏻🤞🏻

I’ll keep you posted…

❤️ Amanda

Poetry

FEAR

First of all, I have to acknowledge the overwhelming positive support I got for my last post from my various ms ‘families’. For an introvert that overanalyses every social interaction (yeah, I think they call that social anxiety 🤔 ), it took me a long time to put myself out in cyber world and open myself to potential criticism. Not that I expect rave reviews, constructive feedback is always welcome. But we all know that feeling of ‘what if everybody hates it?’ Right? Everybody feels that, right? 😉

Anyway, thank you to everybody who clicked and read and commented! I am astounded at the support and encouragement, and so grateful to be a member of such amazing, caring groups.

This is a poem I wrote when I was amping myself up to share my writing. Fear is another of those emotions, like guilt, that many of us try to ignore or fight against. There is a tendency to distract ourselves from the ‘negative’ emotions in life but when we face them head on they provide the counterbalance to the positive emotions we all strive for. You can’t have one without the other.

While fear is a universal emotion, it develops a particularly strong flavour when one receives a diagnosis of multiple sclerosis. Being told you have an incurable neurodegenerative disease, that nobody knows what causes it and there is no way to predict what damage will be inflicted on your body, introduces a whole new level of trepidation. Add to that the daily adventure of never knowing what symptoms might crop up to stop you or slow you down, and the accumulation of disabilities that strip away the identity you have built up over years or decades, and the fear can be paralysing.

I’m coming up on the third anniversary (that so does not seem the right word) of my diagnosis. Three years since I left the classroom. Three years coming to terms with my new normal, trying to heal and to carve a new identity for myself. I realize now that fear was the main thing holding me back from moving on to a new chapter. It’s still there, making my palms sweat as I type this, imagining putting out another piece of myself. But I will face the fear, because if there is one thing I have learned over the past three years, stagnating is not an option and pushing through the fear is the only way to get to the light.

❤️

FEAR

Creeping

Lurking

Hiding behind the mask

The mask of fine

It paralyses without acknowledgement

So ingrained we don’t even realize

The control it has

How powerless we are

Unless we face it

Under the bed

In the closet

The dark

Untried adventures

Nebulous

Heart racing

Skin crawling

Sweat dripping

Light on

Distract

All is fine

Everything is fine

Fine but stagnant

If you let it overpower

Stuck in your small world

Beating against the bars

The bars you hold onto

Justifying

Numbing

Distracting

Wilting

Fight for the light

The dark will always be there

Give it a nod

Let yourself feel it

Then

Move on past

Move into the light

So much brighter

Reflecting the dark

Dark loses power in the light

The light is stronger for the dark

ALC – 17/05/18

Partners/Caregivers

Shoutout to partners!

Happy Monday!

Since I just started this blog, I was planning to start with a more introductory post but I’ve noticed a disturbing trend in many of the facebook ms support groups I belong to and I think it’s a topic worth discussing. Every day, I see at least two or three stories about partners (and sorry guys, but it’s predominantly husbands) bailing out post-diagnosis. Apparently for some people, ms is a deal-breaker of the ‘in sickness and in health’ part of the marriage vows.

I kind of get it from this side of the fence. Standing by while you watch the person you love struggle daily, losing basic abilities, fighting through pain and fatigue, never sure what further deterioration the future may hold, must be terrifying. When the nerve pain is so bad that nothing can touch it, and the slightest touch is like knives or fire so you can’t even comfort with a hug, must be a special kind of helpless feeling. The mood swings that transform your partner from Jekyll to Hyde to a blubbering puddle on the floor, the sensory overload that makes it difficult to be in busy places without shaking like the Great San Francisco earthquake, the bladder and bowel issues that make any out trip a potential disaster, the list goes on and on.

Some people just don’t have what it takes to be an ms partner. Neurologists have told their patients that the partner fleeing is quite a common phenomenon. Believe me, if I could, I’d run from this bugger too. But I don’t want to focus on the cowards that can’t handle the reality of the monster. I want to celebrate those that have the backbone to stand by their partner as support in whatever way is manageable for whatever weird symptoms crop up on a daily basis. Are they perfect? No, of course not. They don’t always say or do or react in the ‘right’ way. Nobody does. But they stay. They fight the fight alongside and even in the silence of the dark bedroom when you’re drowning in the fatigue tsunami and can’t hold a conversation, you know they’ve got your back.

It’s a delicate balance for both sides. The ms warrior wants to maintain independence as much as possible, the partner wants to help but also respect their partner’s dignity. The warrior pretends to be fine, not wanting to complain or explain the latest in the list of symptoms, the partner sees when things are getting too much and takes over a larger chunk of life’s daily chores. The two things that make it work, when it does, and this applies to all marriages really, are RESPECT and GRATITUDE.

It is inconceivable to me when I hear people say that their partners call them lazy or think they’re faking their ms. I do understand that ‘you don’t get it until you get it’. People cannot possibly understand the power of the fatigue that comes with being chronically ill (especially those assholes who claim to be just as tired), and I wouldn’t wish it on my worst enemy. Not even the doctor who told me my symptoms were ‘just a virus’, but that’s another story. Respect means that even if you can’t imagine what your partner is going through, you believe them innately when they say they can’t do any more. It also means not expecting that caregiver to do things in exactly in the same way you might, which was/is a difficult one for me to manage. 😬

The old saying is ‘love makes the world go around’. While I believe that’s true, it’s gratitude that makes that love continue to grow within a marriage. When two people are genuinely grateful for the other person’s existence and how their partnership improves their life, the love can only grow deeper and richer. One of my life mottoes is ‘it’s all about perspective’. I can choose to focus on the negative things in my life or the annoying things my partner does. I can whine that he doesn’t say just the right thing when I’m in a mood, or stack the dishwasher properly. Or I can filter the focus through the lens of respect and gratitude, recognizing that it can’t be easy to be riding on the ms rollercoaster with me. He never bought a ticket but he’s holding on tight, ready to take the corners and dips and loops by my side. I couldn’t be more grateful or have more respect for anyone.

Respect and gratitude to all the amazing partners who are fighting not fleeing!

Poetry

Guilt

I don’t consider myself a poet but some things, emotions particularly, seem more accessible when I let the words flow freely and simply. I wrote this poem about guilt last year. Guilt is an emotion I strenuously fought against but I encountered it full-force when I stopped working. Happily, a year later I’m more at peace with where my life is so the ugly parasite guilt doesn’t get me down as often anymore.

Guilt.

Useless and yet

So pervasive

Sitting waiting hoping

Wanting to move

To do

To work

Rational mind knows

It is what it is

You are where you are

Acceptance

Honour.

Sitting waiting hoping

Wanting to dance

To create

To educate

Body resists

Concrete in my bones

Static in my brain

Days doled out in

Cups of tea

Sitting waiting hoping

Wanting to accept

To be

To honour

And yet

Guilt.