When someone asks what it’s like for me every day with MS, I have to think of an appropriate answer. I say appropriate, because often times when people ask you something like that, they’re expecting a certain response. I think most are hoping you’ll say, “It’s no big deal. Most days I don’t even realize I have it.” Some want you to go into detail because they truly want to understand. Still others are asking because they have unexplainable things happening to them and are searching for something that they can connect with.
I could tell this person some of the basics and just leave it be. It would be up to him/her to ask for more details if they’re interested. I could go with the common problems – numbness, altered sensations, stiffness and the occasional myoclonic jerk that I can sometimes tell is coming, so I throw up a middle finger at just the right moment and blame my rude behavior on the MS.
I could go the route of highlighting the lowest lows and the worst things I’ve experienced during a flare up – vision loss, constant pain, the sensation of being squeezed so tight that breathing seems like a chore.
But the truth about it, for me, is this:
It’s no big deal. Most days I don’t even realize I have it because all of the weird little things that I feel have become the new normal and I don’t notice them most of the time. They’re an educational experience in and of themselves, and I’ll tell you what I mean.
I’ve learned that touching paper for long periods of time is exceptionally uncomfortable for me (bye bye books, hello Kindle). I’ve learned that certain fabrics are going to feel like sandpaper against my arms and legs, so I don’t wear them. I’ve learned that I really shouldn’t use regular pot holders when baking anything and opt for oven mitts (please see all of the burn scars on my hands if you’re wondering why potholders are bad for someone who really can’t feel much until it’s too late). I told you I didn’t have feelings…
I’ve learned that if I don’t get enough sleep, getting out of bed is going to be painful in the morning. I’ve also learned that it will only take a few stretches and the pain just morphs into that “normal” feeling and I carry on. I’ve learned not to hold a cup of hot coffee for very long if I’m over tired or stressed, because that myoclonic jerk will have me wearing it. I’ve learned that if I misjudge how long I’m holding that cup, that I can’t really feel that hot coffee is all over my hand.
I’ve learned that if I take any of the disease modifying drugs that are available, I feel worse than I do when I take nothing. I’ve learned that neurologists are really only helpful when you’re having a flare up, otherwise it’s a waste of time and money. I’ve learned that if I look down at my feet, I’m going to get an electric shock sensation down my spine and that it’s not scary or life threatening – just weird – and sometimes I do that on purpose, just to make sure I’m still feeling things.
I’ve had vision issues, where everything is fuzzy or I can only see in black and white out of one eye while the other functions fine. Through that I’ve learned to appreciate the small things – the color of the sky on a sunny day, the vibrant yellows of sunflowers and the beautiful pink and purple hues of a sunrise, just to name a few.
I’ve learned that I’m always going to be tired, and that’s ok – because it means I’m still active and participating in life. Moms are supposed to be exhausted. So I’m not going to “conserve my energy” because even if I just sit on my ass all day, I’m still going to experience that fatigue. Therefore, I’m getting up and doing whatever it is I want to. I’ll sit when I need to.
When all of these things first happened, they were each terrifying. An entire compendium of shit I didn’t understand. I wasn’t sure how I’d ever wear shoes or sun dresses or read a book or hold anything fragile in my hands. But as time goes on, it becomes normal. It doesn’t mean it’s right or it’s ok. It just means that you stop noticing those things because if you spend too much time thinking about them, you won’t be able to do all of the things you’ve always done.
Most days, I wake up and think to myself that the doctors were wrong. I don’t have MS and one day they’ll find a different way to explain all of these strange things. Then I’ll look at the MRIs. I’ll take stock of everything that I’ve ever experienced on this journey. I’ll realize the ebb and flow of all of it and I know that there’s really no other explanation for all of it. They’re right, but I don’t have to accept that means I can’t be exactly who I am and do all of the things I want to do.
So I’ll get up every day. I’ll be a mom. I’ll go to work and do a fantastic job. I’ll come home and cook and clean and laugh and live. I’ll do a mud run and obstacle course every May. I’ll do a 5K. I’ll drink beer and eat cheese. I’ll ask people for donations. I’ll put together a brewery crawl to help in my efforts to raise money and awareness of something that I try to ignore in my daily life. I’ll watch the Packers and Marvel movies and cheesy TV when I feel like it. I’ll listen to 70s and 80s music and sing along, often loudly. I’ll fly to Wisconsin every September and I’ll walk that 50 miles, JUST BECAUSE I CAN. I’ll love fiercely and wholly and I won’t make apologies for that.
In between it all, I’ll find time to laugh and smile and be inappropriate. I’ll appreciate when people want to be around me and respect when they don’t. I’ll be grateful for my friends and family. I won’t have regrets about not doing something the right way, or losing, or failing, because I’ll know I tried. I’m still trying. I refuse to give up because I think once you exchange the last vestiges of a happy life for something more dark and sinister, then you’re really admitting defeat, and let’s face it – I’m a really poor loser.