Acreage and MS
I know what you are thinking, what does MS have to do with this house or with the renovations? MS always plays a factor in all my decision making, something many people will never understand. Every single thing I do and most decisions I make can come at a cost or come with risks when living life with MS. With what we know about MS, everything I do I have to assess, is it worth it and how might the decision I make be impacted should my MS progress. Does the benefit outweigh the potential costs and risks and are there ways to mitigate these risks?
One of the things that almost held me back from moving forward with buying an acreage was the fear of becoming isolated and losing independence. What would happen if I could no longer drive? What if I needed help? Being too far away could create a huge barrier to my independence should my MS progress. We had an absolute limit on how far away we would go, and to be honest the proximity of this property to the city was one of the biggest factors in the decision. One of the other main factors that we took into account was that we preferred a bungalow. Because stairs and mobility issues just didn’t really seem like a good idea. I know what you might be thinking, why would you be worried about these things they may never happen? That is the thing about MS, you never know. Today as I write this stairs are no problem, but tomorrow they might be. Without any warning at all. I live a lot of my life trying to live it to the fullest, but also always trying be prepared for the worst and being realistic. There are many decisions in my life that I have made because they offer the most stability. The unpredictability of MS is by far one of the worst parts of it, so if I can be at all prepared I try to be.
In a bungalow we do have stairs to the basement. The decision to put carpet on the stairs was also a decision that was made with MS in mind. Trying to crawl up and down stairs would be a lot less painful on carpet than hardwood. The laundry room also being at the bottom of the stairs will give me the ability to still do what I need to without having to go too far.
The painting on the wall above the stairs in one of the first things you see when you walk in is named “Sing Hallelujah.”
If you’ve followed me for a while, you might remember the significance of this painting. For those who haven’t or if you don’t remember I will explain. I have been a huge fan of Giselle Denis for over a decade. I was lucky enough to attend a fundraiser with Paul where I got to sit with her when she took a break from her lived painting. I told both her and Paul the story of seeing one of her paintings online titled Hallelujah in memory of Leonard Cohen. I wanted so badly to buy it, but it was gone by the time I saw the post about it. So why this painting?
When I was put on immunosuppressant steroids to get my vision back they nearly killed me. Between not being able to sleep or eat for almost a month, I remember very little. There is however one thing I remember very clearly. The song Hallelujah sung by KD Lang on repeat. This song without a doubt kept me alive. It gave me something to hold onto. Netflix was only just starting to be a thing and really all I could do was listen to music. I had a playlist of relaxing songs. Hallelujah is the only one I remember.
Then Christmas 2019 happened. Christmas really has never been about gifts for me but I woke up and was so spoiled with many incredible and thoughtful gifts. Once everyone’s gifts were open, Paul whispered to me that he forgot one for his Mom upstairs and asked if I could get it. I got up the stairs and opened the closet only to find this stunning masterpiece. It was painted just for me. I will never forget that first Christmas we had together. It’s funny what sticks with you in your toughest times, but also how having a reminder of those tough times pushes you to remember what you have overcome but also the beauty that can come from it.
When we were coming up with a wish list for the house we also had on there a space that I could use to exercise. It didn’t have to be big, but just somewhere I could put my spin bike and a few other pieces of equipment. Exercise is one of the main ways I manage my MS so having a space where I can do that has been amazing. The TRX was also and absolute must not only because the space isn’t huge but because it allows me to still exercise on the days when I am struggling with balance and numbness. As I mentioned in the post about the basement, we stole some space from one big room to make this small room into the perfect little exercise room. It was also already set up to have built in shelves where I could put a TV to watch exercise classes. The shelf the TV is on is put at such a height that I do not need to bend my neck down at all. That might sound weird, but as someone who has a lesion on my spine, I sometimes get Lhermite’s sign. Lhermitte's sign is a sudden, brief, sometimes buzzing sensation like an electric shock that moves down your neck into your spine. The neck pain may move into your arms and legs and sometimes to your fingers and toes. It is usually triggered by bending your neck so that your head moves down with your chin moving towards your chest. This trigger gives Lhermitte's sign its alternative name of barber’s chair syndrome as this movement is similar to when you move your head forward to let the barber cut the back of your hair.
There is one last part of the house that MS played a critical part of the decision. We decided to put in a shower with seat in the master bath. Showers seem to be both my greatest ally and my worst enemy. There is something about water that I find so healing, most of the time. Then there are the rare moments where water feels like I am being pelted with hail. More commonly on the days I am fatigued, lifting my arms to wash my hair is exhausting so having a place to sit is amazing. Also for days I am struggling with my balance having somewhere to sit is also awesome. And an added bonus, whether sitting or standing, shaving legs… I think a lot of women understand that! I remember hearing a lot that couples can struggle with renovations. I get it, it was a very stressful time. Paul and I seemed to do ok all things considered other than when it came to this shower.
When I walked in as the space was being prepped for tile, I realized there was no seat and Paul didn’t think it was really that big of a deal. Sometimes people living with MS are so good at coping with it, that even the closest people around them really have no concept of how tough it is. When Paul asks me how my day went my answer is usually something like, work was busy or it was good, or maybe some exciting fact. Very rarely do I ever think to say, I had to sit down in the shower today. Part of it is trying to protect him from feeling helpless with my struggles, but part of it is also to protect myself from the mental struggle with MS. It is similar to not wanting to tell people that I had MS when I was first diagnosed, because when I actually said the words, it somehow made it more real. I get asked a lot how I get through the tough days and I never know how to answer. The simplest answer is I just do. But the more complex answer seems to be explained a bit in this post. It is being prepared, being realistic, but part of it is also being in a bit of denial. It’s not denial in the sense that I don’t believe I have MS, but more in the sense that I don’t let it control me. If I focused on my struggles or fears, it would be absolutely paralyzing. I wouldn’t be able to get through the day. Instead, I know it’s always there, but that “denial” has allowed me to get to a place where I know how much of it can I just learn to ignore or push through until it just becomes a “normal” part of life I deal with. You start to learn what you can ignore and what you can’t. The problem with that is, then those around you don’t always understand, especially when you make it easy to forget that you are struggling. So for Paul the shower wasn’t that big of a deal because really, how would he know? Luckily thanks to Schluter Systems it was easy to add and turned out amazing!
Somehow with all of this, acknowledging what may be helps me to feel at least somewhat prepared if my MS does start to progress. For now I am just enjoying all our hard work that made this house our own. As I sit here writing this looking out the window seeing Mousse running around in the trees, I feel at peace. I know we are right where are supposed to be, and I am glad MS was part of the decision making because I love this place.
