Taking Advantage of the Good Days
A good day? Yes, it is possible to have a good day with Multiple Sclerosis. Maybe the weather is a little cooler than it’s been, and my pain isn’t quite as bad, and I’m not nearly as fatigued as usual. It does happen. None of my issues ever really disappear, but they do lessen. When these moments happen, despite worrying about paying the “MS Tax” later, I try to make the most out of them. I become extremely motivated to get out and be productive or have fun, because I have to admit, these days, as I can see my disease progress, I worry about how much longer I’ll have these moments. That’s scary as hell and a huge motivator.
Not what I once was
As I mentioned, even my good days are fraught with issues, but I’ve dealt with them long enough, that I’ve adapted to them. As I write this, I’ve been diagnosed for nearly two decades. Like many people with MS, that first decade and the associated changes weren’t too bad (even though it seemed it at the time). Exacerbations, followed by periods of near normalcy, a typical life of someone with RRMS. That is, until those periods of normalcy started getting less and less normal. You see, every exacerbation causes damage, that precious myelin lining our nerves is damaged, even stripped away. Nothing ever replaces it, nothing ever fixes that damage. Over time, all of that damage adds up. I don’t think I really understood or considered that when I was younger (If I had, I sure wouldn’t have ever had a lapse in medication). I can see and feel all of that damage these days; I am very much the product of two decades of this disease and much of my life reflects that.
It’s not all bad
Despite my problems and my increasing disability, it’s not all terrible. Perhaps that’s because I try to have a decent attitude or perhaps it’s because this disease has taught me a whole lot about appreciating the little things in life. I do have what I consider “good” days and I’m thankful for that. When I feel decent enough, I try to do whatever I can, I try to get out and see friends, or do something, anything. Sometimes I just do a little more around the house. Even getting some laundry done can make me feel triumphant some days. I do pay for it the next day or two, but I try like hell to make the most out of what I have. Because of that, I live a pretty good life. While it can be frustrating when I think back about all I’ve accomplished and could do before I got to this point, I think it’s important to think of our lives as different, not necessarily worse (even if it feels that way). Small victories are still victories, and they add up. Mostly, I try to celebrate those small victories because I don’t know how many I have left in me.
It’s still scary, but that’s OK
Despite living what I think, is still a pretty awesome life, I have moments where I’m incredibly scared. I know I’ve also been guilty of “overdoing it” more times than I can count, simply because I was scared I’d never be able to do it again. I think it’s OK to admit that life with an unpredictable disease is incredibly scary at times. I think it’s natural and understandable that fear sometimes drives your actions. I don’t talk about it all the time, but, yeah, this disease scares me. I watched my grandfather degrade and eventually pass from this disease, I know how bad it can get. However, a lot of things in life can be scary, it’s how we chose to deal with that fear that determines the quality of our lives. I do my best to not let my fear of the future get the best of me, but I do acknowledge that even I have times when I’m lying in bed terrified of what the future might hold.
Using my fears as motivation
I try to make the best of those fears though and use them as motivation. Sometimes, they’re exactly I need to kick myself in to gear. Will I end up feeling rough afterwards? Probably. Will I regret getting out and doing something? Likely not. It can take some extra motivation to get moving some days and it doesn’t really matter where that motivation comes from for me. For me, on occasion, it’s from the fear of not being able to it ever again.
Does your employer provide workplace accommodations due to your MS?