Living with a chronic illness like Multiple Sclerosis involves adapting to a new way of life. While some people like to say that MS “doesn’t have them”, I freely admit that it’s part of me. That doesn’t mean it runs my life, it simply means that I’ve adapted the way I do some things. With that in mind, I thought I’d take a look at some of the (sometimes weird) life hacks that I’ve adopted because of MS. These are small things I do on a daily basis that make my life with MS go a little smoother. Things that are routine to me, but still a little off-centered enough that I get asked about them.
Apparently one of the first things people notice about me is my beard. I’ve been growing it for a couple of years now and it’s started to get to a nice size. I’ve noticed that beards have been trendy lately, but that’s not at all why I grew one. I’m far from a hipster, the reason I grew one is because of MS. Spasms and tremors in my hands are a big reason. I admit it, I’m a pretty hairy guy, so to keep clean shaven, I’d have to shave every day. Shaving was starting to become a pretty bloody affair because I’d get sudden spasms in my arms or tremors in my hands every time I tried to shave. My hairiness always seemed too much for even a very good electric shaver to tame, so here I am with a beard. Even aside from all the cuts, I feel I can make better use of that time and energy on something else. Sure, shaving may seem like a minor task to many, but when you have a chronic illness, as the “spoon theory” says, everything adds up.
I grew up playing hockey and remain a fan of it to this day. You’ve maybe heard of the concept of a “playoff beard”, where players start growing a beard at the beginning of the playoffs and don’t shave until they have won the championship or have been eliminated. I started growing mine around the time I got pushed onto disability, when things really took a rough turn because of MS. Losing my career to MS was a pretty big deal and I do very much look at this as the playoffs of my life. Being on disability, fighting my disease on a daily basis, it’s easy to look at it like that. This is when I need to be at my best and “play” my hardest. Seeing that beard every day is a nice reminder that I’m “still in it”, I’m not eliminated yet. It may seem silly, but small motivators like that can be pretty helpful.
If you see me wearing short sleeves, from a distance, you might think I’m sporting a few tattoos. Upon closer inspection, you’ll see that I’ve actually just written on myself with a sharpie. Sometimes a lot too. Some of my symptoms are related to cognitive changes, memory being a big problem area for me. One way I try to combat those memory issues is by writing notes to myself. I use an app on my phone for some things, but many times, particularly for short term items, I write on my arms so I will see it and remember it. I know enough to check my arms when I am forgetting something. It’s odd, it may not look great, but it’s extremely helpful to me. And contrary to what many think, sharpie does come off of skin easily.
I grew up with dogs, lots of dogs. They’ve always been an important part of my life and now is no different. I’ve spoken before about how my pups have been enormously important to me since I’ve been on disability. The types of dogs I’ve had recently have had to change though. I have two bigger guys (Murdock and Dexter), but because of their size and need for exercise they have to live with my parents. My legs just can’t handle the longer walks they require. It’s ok though, they have a blast at my parents’ place (they have a massive yard and other dog friends there). In recent times, I have adopted smaller, older dogs. My first, Penny, who has sadly passed away, and now Ferdinand, move a bit slower and need a little less walking than the big guys. They both had/have assorted issues, just like I do. There are a lot of older dogs out there that maybe aren’t as spry as they once were, just like many of us with MS aren’t as spry as we once were. To me, that’s a perfect match. So please, always consider rescuing an older dog, you won’t be disappointed!
Having MS can be pretty lonely, depressing even. Being on disability can make that loneliness and depression even greater. So many people think it’s great to not work, when that is far from the case. It sucks, it’s awful, and it’s boring too. You have to find something to occupy not only your time, but your mind. I found that I needed a release, something to quiet my thoughts at night. My body can’t go play hockey any more, so I needed something less active. Somehow that became toys, I’m not even sure how. I now collect toys (primarily action figures) and also sell them on eBay. It’s my hobby. I have an office (ok, toy room) in the house where I can go and just get away from everything that’s bothering me, I can focus on something other than whatever is going wrong with my body at that moment. It may sound weird, juvenile even (though I’ve learned there are a massive amount of adult collectors out there), but when you live a life in pain and you are isolated a lot, it’s nice to have a distraction. At the suggestion of one of my doctors, this hobby has grown to include the building of LEGOS/Mega Bloks. He suggested it as a therapy to help with both my cognitive issues and the numbness in my hands. It’s actually worked wonders (I’ll even work on a set before I start writing because it seems to get my mind ready). Bottom line, finding some kind of hobby or distraction is important, just remember that you may find one some place you wouldn’t normally look.
The way I dress!
Ok, this may not be so odd, but, because temperatures can be such a trigger for me (especially warm ones), I tend to wear shorts a lot. Like sometimes even in the winter. Those shorts are typically cargo shorts, and you know what? In the summer, there is a good chance I have some sort of cooling pack in the pockets to help me deal with the hot weather. I also get very particular about the material of shirts I wear. If I find something that feels ok and is thin and breathable enough, I’ll buy multiples of that shirt. It may look to some people like I wear the same shirt constantly, when in reality, I have several of it. Finally, I wear flip flops most of the time. My neurologist hates that I do that, because I do tend to fall a lot. Since I fall a lot no matter what kind of shoe I wear, I stick to my flops (again, even in the winter). My hands get numb, so putting on regular shoes can be tough, unless I get my wife’s help. So wearing flip flops is something that allows me to take care of myself a bit. Not having to rely on someone for even that small of a thing is pretty helpful for my mental state!
I feel like I have a lot more of these I could talk about, but for now, I’ll stop here. I’d love to know though, do you have any ways that you’ve adapted to your life with MS that may seem a little different to others? So please hit up the comments and let me know, I’m always looking for some tips! Thanks for reading!