Fearing the Future

Living with a highly unpredictable disease like Multiple Sclerosis can be an exercise in controlling your fears. Every day (and night), we can easily get consumed with worrying about or at least thinking about our future. With a disease that can change your life in the blink of an eye, these concerns are not unfounded. While it’s important to acknowledge and prepare for the future, we have to be careful not to let the fear of it consume us.

Legitimate fears

Let’s face it, MS is incredibly frightening. We never know when we won’t be able to walk, or see, or stand, or do any number of things that we always do. I have literally woken up and been unable to walk or use my legs due to an exacerbation. At this point in my career of MS, I know if something like that happens again, it might very well be permanent. It’s not easy to think that you might be working one day, but be unable to the very next (again, that’s actually happened to me). You might not only lose your mobility, senses, or ability to think, you may lose the chance to provide for yourself and your loved ones. That’s extremely terrifying, and it’s the kind of fear you can’t appreciate until you experience it.

The Blame Game: Yourself

Having a chronic illness like Multiple Sclerosis can seem extremely unfair. For many fighting this disease, there is a natural tendency to want to assign blame. I think we’ve probably all done it at some point. I know I sure have. Like many people who live with a disease like this, one of my primary targets when assigning blame is none other than myself. What did I do wrong? How did I cause this? I must deserve it. Even though I know better, I still find myself guilty of this. Which is why I’m here to remind both you and me, that when it comes to the blame game, you can’t look at yourself.

Was I unhealthy?

It’s easy to think back and try to figure out why this happened to us. One common train of thought for people is wondering if they weren’t being healthy enough, maybe not taking good enough care of their body. This isn’t one I worry about (I was in the best shape of my life when I was diagnosed), but it is extremely common among people that I talk to about this issue. Many people worry that they did something that caused MS, or rather, they didn’t do something to prevent it. Maybe if they’d exercised more or taken a different vitamin, then maybe they would never have gotten this disease. If you were extremely reckless with your body, like smoking, or were otherwise extremely unhealthy, perhaps then you’d have some traction in this argument. Even still, there are plenty of people that are in perfect health that eventually get diagnosed with Multiple Sclerosis. So chances are, you didn’t do anything to cause this and you couldn’t have done anything to prevent it. So stop blaming yourself.

My Sliding Scale Of Accomplishments

As we make our way through life, we come upon numerous successes that we are proud of. Whether we attained these goals through hard work or luck, or a mixture of both, they are still moments that we celebrate, moments that fill us with pride. The first time you ride a bike without training wheels, when you make the team, graduating, getting your first job, bringing home that first real paycheck, being promoted, getting married, having or adopting a child, I’m sure you know the moments I’m talking about. As I’m coming along nearly two decades of being diagnosed with Multiple Sclerosis, the type of accomplishments I’ve been having aren’t exactly the ones I expected to be having at this point in my life. I’m no less proud of them though, but that hasn’t always been easy for me.

A mountain for me

I started thinking about this a week or so ago when I came upon, what was to me, a pretty nice accomplishment. A local historical area near me had a traveling WWI exhibit that they were going to have on display for one week only. It may not come as a surprise, but my nerd-dom extends far beyond just loving LEGO; I’m also really into history. So this exhibit was something I really wanted to check out. I was also pretty adamant about going to see it by myself (I hate dragging people along to things they have zero interest in; I do it often, too). So, I set this goal to go to this thing, by myself. It may sound easy for most people, especially when the exhibit was only like five miles away, but for me, it was tough.

Identity Crisis

How do we view ourselves and what does that say to the outside world? Having a serious disease challenges our identity at every turn. For those of us with a chronic disease like multiple sclerosis with no known cure, the question of shifting identity can be challenging.

MS wasn’t going to change who I was

From the beginning days with my MS diagnosis, I was fairly confident in saying to others, “I have MS,” aligning myself with the profile of people who have relapsing-remitting multiple sclerosis (RRMS). There were treatment options, and from all I read, I could expect to live a fairly normal life outside of having MS. Having MS didn’t mean changing my life, and I could continue on the same path. MS wasn’t going to change who I was. Or at least that’s what I thought.

Reality set in

Then reality set in – living with MS began to peel away at my identity in small ways. I walked slower and eventually began using a cane for balance and safety. The everyday activities I once did became more difficult. No longer could I be in the summer sun tending to a garden or pulling weeds. Vacation times and locations became more focused on weather conditions and what the physical demands might be, rather than where I really want to travel to next.