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!
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Elissa

Elissa Dickey

Elissa Dickey lives in Aberdeen, South Dakota with her husband and children. A former journalist, she is now an author who also works in communications at a university. Her debut novel, The Speed of Light, will be published in winter 2021 by Lake Union Publishing.

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    3 Comments

  • Jonathan Mitchell Elsenbroek   Apr 26, 2019 8:36 AM
    In response to this MS blog entitled Life on MS Treatment where the writer ends the piece by asking what has worked for you and then states she would love to hear advice. I try to stay away from giving advice. My advice to a person diagnosed with MS is to hang on and enjoy the ride.

    I just turned 50, am a single male with no children, of course I have a mom and dad and even 3 brothers all of whom have families. I was married once to a very talented and beautiful girl and we had a couple different dogs. I was diagnosed with SPMS about 7 years ago, I was having mobility and gait issues (just to mention a few.) Since then life has changed irrevocably, I have stopped working, live on less than $15,000 a year (thank you SSDI), sold my house and live one day at a time in a very small handicap accessible apartment which is perfect for me and my MS.

    I have been on Ocrevus, my 3rd MS treatment, for about 2 years now. I am glad to be on it, grateful even. I did Copaxone and Tecfidera both for about a year. I also did nothing for a couple years. However, I have been with OMS (Overcoming MS) since the beginning in 2012. I have adapted it to fit which may or may not be ok according to certain people, whoever they may be. The thing that has helped me most is lifestyle change.

    I do many, many things since being diagnosed with MS. I stay on top of what’s happening in the world of MS, I avoid stress, I take Ocrevus and vitamin D and fish oil, I have changed my diet, exercise, meditate, drink lots of water, participate in life, read and comment on MS blogs and most importantly hang on and as Mitch Sturgeon says Enjoy the ride.

    I often tell people MS is a funny disease, it affects everyone with it differently, maybe because it deals with the incredibly complex and multifaceted CNS (central nervous system.) I know I have my issues but I still drive (not much) am able to feed myself and even grocery shop. I sure as hell did not expect to be where I am at now, 10 years ago. And it is much different. But I take it a day at a time and do the best I can with my new normal, which changes often.

    Good luck to anybody diagnosed with this dreaded condition. God bless and Enjoy.

    JE

    (Music for this piece is Shakedown Street by the Grateful Dead.)
  • Ted Dickey   Apr 26, 2019 9:58 AM
    I am very proud of my wife. I also appreciate JE's comments.
  • Joseph Genarella   May 5, 2019 3:17 PM
    I just started ocrevus having my 1st
    Treatment. I have SPMS after 45 years of
    RRMS.has anyone have SPMS and on ocrevus,if so, any improvement?
    Also, I am more fatigue than usual.
    Please share your thoughts