Life on MS Treatment
Starting treatment for multiple sclerosis can be scary and life-changing on many levels.
It’s not just the inconvenience of having to fit a new medication into your schedule. It’s also the fear of side effects—not to mention the fear that comes when you find out your disease is progressing.
This is what I faced a few months ago when I got the dreaded call: My latest MRI results showed new lesions, and it was time to start treatment. For me, that was Copaxone injections.
I’m not going to lie, the weeks that followed were rough—emotionally and physically. But with the support of family and friends, I am adjusting. Even though I’m still relatively new to treatment, I wanted to share some tips that I’ve learned thus far:
Be Prepared: Injection sites get irritated, but it does help to ice the site beforehand. Also, invest in Band-Aids of various sizes. For me, it was also helpful to create my own “side effect station.” I experienced flu-like symptoms (fever, aches, chills, etc.) on injection days at first. Thankfully, it’s gotten easier as my body has adjusted, but it really helped to be prepared on injection nights with my “station:” an extra blanket, robe and acetaminophen.
Ask for Help: Now is the time to rely on your partner (or family member or friend). That’s especially true when you’re rotating injection sites—some of those spots are hard to reach on your own. But more importantly, this is a time when you need the love and support of people who care about you. They’re the ones who will get you through the dark times when you’re feeling sick, scared or simply overwhelmed.
Talk to Your Kids: As a parent, it’s hard sometimes to let your kids see that you’re struggling. But kids pick up on more than you realize, and it’s okay for them to see you vulnerable. For me, it has helped to let my kids know what’s going on—to be honest about the fact that sometimes mom is not going to feel well. I’m very proud of how caring and understanding they have been.
Make Connections: It’s not easy reaching out, but talking to someone else who is going through what you’re going through can be very helpful. MS is different for each person, and yet we’re all fighting the same battle.
You’re Still You: Sometimes it’s easy to focus on everything MS has taken away or changed about your life. For me, it helps to do something that makes me feel like “me.” Writing has always been therapeutic for me—there’s nothing quite like immersing myself in a story. I’ve also found that playing volleyball with my city league teammates is great—both for the social aspect as well as the exercise.
A New Normal: Most of all, it has helped to remind myself that this is not the end; it’s simply the beginning of a new normal. I know there will be times when you think about how life used to be, or what it could’ve been. But try not to linger there—accept what is now, look for the beauty in every day, and be grateful for the blessings in your life (for me, it’s the family and friends who continue to support me in all of the ups and downs of this disease).
Share Your Tips: If you’re on treatment for MS, what has worked for you? Since I’m still relatively new to this, I would love to hear any advice you have to share!
Playing the drums, which had been effortless and fluid, has become decidedly effortful and deliberate.