How Old Am I Again?
Some days, I have to remind myself that I’m a young girl in her mid-20s. Some days, my body makes me feel like I’m much older than I really am. Some days, it doesn’t. That’s the thing with MS. Every day is different, and each day can bring a new set of challenges and different symptoms to deal with. From my experience, you can never let yourself get complacent with a disease as ever-changing as multiple sclerosis.
What is MS?
According to the National Multiple Sclerosis Society, MS is defined as “an unpredictable, often debilitating disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body”. That is a pretty vague description of something so many of us live with on a daily basis. Living with MS we know that it is absolutely unpredictable, and yes, often debilitating. However, that makes a broad statement that I think is pretty scary to think about.
MS is different for every person
It sounds like once you’re diagnosed with MS, you basically have no option but to end up someday in a wheelchair or hardly able to move or take care of yourself. Of course, for many people, a wheelchair or device to aid in mobility is necessary - that is undisputed. However, for many others, that will never be something they end up needing as for one reason or another, their mobility or ability to care for themselves is not affected, or at least not to the degree deemed “debilitating”.
The challenge of staying active
I was born and raised in an active household. We played sports growing up, and it was a pain to be inside due to rain or bad weather (though I grew up in the Midwest, so there were a lot of bad weather days, and we often just played through the rain or storms unless they were really bad). I’ve always been an avid sports fan and grew up cheering on my favorite teams and wanting to play the games they played. MS has made it a challenge to keep up on the extremely active lifestyle I led before.
Learning to adapt
Initially, when I was diagnosed and having mobility issues for the first time, I was nervous that MS would take away some of what I considered to be the most important parts of my life, some of what made me who I was (in my opinion, anyhow). What I have come to learn is that MS does not have to dictate what I can or cannot do, I’ve just had to learn to adapt and find new ways to approach different situations. There are a million ways to modify every activity you do, and with some creative thinking, you can find that it’s not impossible to do the things you love for the most part, even with mobility troubles.
Taking each day as it comes
Something else that has taken me some time to accept with MS is that you have to take things one step at a time, one day at a time, sometimes even one hour at a time. There are going to be days that are better than average and days that are worse. You’ll have to make adjustments based on what each day brings, and that can be really tough. I’ve had a hard time learning to be flexible in my plans. I don’t like having to cancel because I’m not feeling well or having to adjust to what my body tells me is going to be necessary.
I still have trouble
For someone who loves to know a month out what my days will look like and where I’ll be on what day at what time, I still have trouble when I can’t keep plans or I have to change plans last minute. But thankfully, my friends and family are good about going with the flow and everyone understands that I don’t change plans last minute on purpose, but out of necessity.
How have you learned to adapt and make your life work around your MS symptoms? What are some tips and tricks you use? I’d love to hear what everyone does to make sure they live their life their way, MS or not!
Have you ever experienced any of the following financial struggles due to your MS?