One of the reasons I stopped painting is because I need to go up the stairs in order to clean up or use the washroom. A task that has become increasingly difficult for me. It has resulted in many many oil paint coloured fingerprints in many areas of the house.
Painting has also gotten harder and harder to accomplish which in turn made it less enjoyable. So I decided to take a break and close my studio doors. At least until the we had a bathroom installed in the basement, near my studio. And bonus, we could use the studio as storage while work is being done in the basement. But the process of constructing a bathroom is taking much longer then anticipated. We’ve been waiting/working on it for almost 6 months. We’ve converted to electrical heating (we would of done this regardless but having the oil tank removed will allow us space for a shower), we’ve had many contractors come to the house, we’ve met with an interior designer on many occasions. And finally a plan has been selected, parts will be ordered soon, and work SHOULD begin late January. Lasting about 3 weeks which means late February I should have an accessible bathroom in the basement near my studio.

When I closed my studio doors I didn’t think it would be for over 6 months. Since then I have been somewhat depressed. The arrival of winter is playing a big part in this.
But I recently watched a video of a guy with MS who found strength in his struggles and I was inspired. So a couple weekends ago (feeling confident, energized, and pumped to push through the struggle) I went to the art store, purchased some oil paints and a canvas (36×36). And on Friday afternoon I got to painting again.

About 2 minutes in I was reminded why I stoped. I struggled to even get the cap off a tube of paint. A few minutes later, I dropped a tube of paint into paint and the mess began. Eventually I started painting but could feel the pain in my back and joints. After painting for about 1~1h30 I was completely depleted and had to call for help to get to the staircase. (about 15 steps). I rested the next day.

I don’t know how I feel about this. A little scared, a little sad, a little proud of my strength, a little happy to have a painting in the works, and very anxious for the bathroom to be done. I don’t know what will happen once the bathroom is done but one thing is sure, this will be the last painting until I have a bathroom downstairs.

A work in progress….
week 1

week 2

Perhaps a very down, depressed version of myself.
But I’m here. Highs and lows.
Fears and hopes.
Writing but not sharing
Planning trips, journeys, and home renovations.
Excited and anxious.
Alone and surrounded.
Focused on distracting myself.

I’m slowly starting the Walhs protocol again

because nothing says “get your act together” like seeing your daughter cry out of concern for you. So I’m slowly going to say good bye to dairy, sugar, and grains. Oh bread, how I will miss you. But I reserve the right to have cake on my birthday and stray from the protocol while on vacations.
Speaking of vacations. 2 planned, 1 in the works, and if all goes well Portugal for my birthday. And hopefully Iceland at some point. No idea when. Too much going on right now… but if anyone wants to help me go to Iceland (with the kids) then let me know. I figured I could give Dean a week off. He needs a break and video game time is almost down to zero hours a month. That’s just insane!

I’m still in the process of getting an accessible bathroom and laundry room done in the basement. I think we (well a lovely kind determined designer) finally figured out how to make it all fit inside a tiny space and the contractor has okay’ed it.

So work will probably start after the Christmas holidays. January will surely suck. (cause of the construction and I imagine the dog will bark the entire time, and you know…the freaken weather)

And this week I have started researching and contacting home elevator companies so I can access every level of my house again. My daughters reaction “nooooooooo!” (She hates elevators, she keeps thinking she’ll get stuck in one). And my son’s reaction “COOOL! We will have the coolest house”. His reaction is making the process a little easier for me to digest.

I’ve been … let’s say fragile these days. I really didn’t think the deterioration of my body would progress this fast…or at all really. My ego is taking a beating. I don’t know what to think, what to plan for. Part of me knows I need to mourn, because this sucks. This is hard. This is something anyone would have a reaction to I would think. I can’t imagine anyone waking up unable to move their right hand and be like “ladida, no biggy” and go on with their day. Right?
But I also have to stay strong for my kids. I don’t know how to do both simultaneously. The more I try to hold back tears the more they want to come out. Perhaps January should be spent in an accessible condo/Airbnb downtown with Leo. But then who will take care of the kids. (Dean travels lots for work)

And occasionally I work on my book but I’ve decided to push back any talk of release till after all the trips I have planned. In the hopes I get some pictures worth including in there. But for now I’m touching up my favorites. And I’ve dropped off over 200 35mm negatives to be scanned. So my favorites are of the highest quality.

So in conclusion, Ms sucks, planning home renovations sucks the joy out of renovating your home, very excited about upcoming trips, very depressed about winter and MS, puppy is cute, kids are good, Dean is busy, I need to win the lotto.

Another full on crying frenzy

I’ve been having a lot of those lately. I’ve broken down down in front of friends, family, neighbors, and even strangers. I can not talk about what is happening without tearing up. I am trying to stand, I am trying to keep a smile on my face and to stay positive but it’s much easier said then done when you are basically being kicked when you’re down. Having a progressive disease is very hard to adapt too. Something new keeps popping up. It’s like every day is the worst I have ever felt yet probably the best I’ll ever feel ever again. It’s a mind fuck. I often think if I were to switch bodies with someone for a day I would hit the ceiling, and they would crumble to the ground and probably call an ambulance.

I hurt my right hand today, smashed it into the library while trying to squeeze by a tight corridor with my wheelchair. Also I can barely lift my right hand today (was like that before I smashed it). And I’m planning to go to a camera shop tomorrow to switch some lenses since some are getting too heavy to lift. If you know me, then you know that not being able to hold up my camera is heartbreaking. Yet I try to smile through it all. I can, as long as you don’t ask me about it.

In good news I’ve come to grips that I must sell my car. Well I guess I could keep it and just never use but it makes for a very large and burdensome paperweight. So sell I shall. Now I just have to come to terms with using wheelchair accessible taxis…hold on, need a tissue….

K

I focus mostly on my legs, but I have lots of other symptoms. They’re just embarrassing at times, less obvious, or personal.

I catch myself laughing out loud and crying at the same time. It feels like such a bad joke you can’t help but laugh at how ridiculous this disease is. I’ve tried MS support groups but it’s too much, too scary, too depressing. I can’t help feel like I don’t belong. Everyone there does. It’s not a fun party.

I’ve tried therapy but can’t help disregarding what they say because they just don’t know. They can’t know how this is, how hard it is to lift yourself up when it’s the perfect excuse to lay down. You’re sick?! You should rest. You have Ms, fight through it.

My son will be home soon. Happy face time!

Everything will be alright. You are strong. You can do this. You are woman. You’ve pushed 2 babies out, you can handle this.

I wrote,
And I feel better now.

The tears have stopped, the wounds are healing, and the pain is fading.
I can dream again.

I will be tested once more, hopefully not too soon,
and I will handle it then too…

F-U MS, this girl isn’t going down without a fight
💪🥊