MS LifeLines Ambassador,
living with relapsing MS
We gave some of your top questions about living with relapsing MS to three of our MS LifeLines Ambassadors. If you'd like to ask other questions about living with MS, give the Peer Connection Program a call at 1-866-783-5189.
How have your relationships with your family and your friends changed since the diagnosis of relapsing MS?
Carolyn: I did not tell my family for a long time because I felt embarrassed by my diagnosis. I finally told them after I had a significant relapse, and it was a HUGE burden off of my shoulders. I never realized how much stress it caused me to hide my condition from them. I would make so many excuses, feeling so guilty but not wanting to worry them. I really feel I gained much needed emotional strength after letting go of my secret. Revealing my MS set me free!
Ted: Honestly, not much has changed. My family and friends are very supportive and encouraging.
My diagnosis of relapsing MS has improved my family relationships and brought new friends into my life. At the time of my diagnosis, I was a flat-out workaholic and had very few friends outside of work. The diagnosis has helped me put work in perspective and appreciate the importance of family and friends. I still work very hard and take pride in what I do, but I have learned to slow down, relax, and enjoy my relationships.
Before MS, my identity was wrapped up in my work and my achievements. MS has taught me to love me for who I am. That in turn has allowed me to be more accepting and generous toward others. I married my soulmate nine months after being diagnosed. He has made me realize the value and reward of a deep relationship and has made me such a better person.
What advice would you give others who have been recently diagnosed with relapsing MS?
Carolyn: Consider letting your family know about your MS if you are hiding it from them. The strength that they can give you is immeasurable. The burden of keeping MS a secret from those you love may just not be worth it.
Stay on treatment—give yourself a chance to reduce the frequency of future relapses.
Surround yourself with positive people—don’t listen to stories from people about someone they know who has MS and isn't doing well. Keep your eye on the ball—concentrate on your body and your mind, and make your decisions based on how you feel and what you need—with the help of your doctor and loved ones.
Ted: Get on treatment, stay on treatment as directed by your doctor, and get involved with positive people living with MS.
Christy: To those who are newly diagnosed with relapsing MS, I would first say work with your doctor to start on a DMD therapy as soon as possible, and commit to it. You can't necessarily ‘see’ or ‘feel’ the effects that show your therapy is working, but a DMD is an effective way to treat your relapsing MS.
Second, I would implore you to keep doing what you love to do and to keep setting new and exciting goals for yourself.
Finally, I would encourage you to set priorities, and then stick to them. For me, I needed help learning to say “no.” Now, I regularly evaluate my commitments and choose two or three things that are most important to me.
Has MS changed how you and the people in your life have approached your
Carolyn: My family plans get-togethers in the mornings or early afternoons now. They realize that I would probably miss events in the evenings because I tend to run out of energy later in the day. We celebrate occasions early so I can attend, and it has worked out great!
Ted: I just slow down and do what I can. Everyone who knows me understands when I need a rest.
Christy: I am fortunate that I am able to take care of my day-to-day needs without much accommodation. There are two main areas, however, where I have had to work out some accommodations. The first area is managing heat. We live in the South at the beach. It gets very hot and humid sometimes, but I love to be outside. One thing my husband has done is set up a drip system for all my potted plants and flower beds, so I don't have to physically water them myself every day. I still feel like I take care of them, yet I no longer have the added burden of watering every day. When it comes to exercise, I don't exercise outside in the summer. Instead, I have an elliptical machine in the house, and I place two fans on each side of me to keep me cool.
The other area is an accommodation for my cognitive issues—I have a hard time concentrating and lose my focus very quickly. One of my major challenges with this was to make sure I paid all my bills on time. I set it up so that all of my regular monthly bills are due on the same day, and I only have to sit down once a month and pay them all at the same time. I also do as much online as possible, where I can schedule the payments ahead of time.
What is the best piece of advice that you’ve received to help you with your relapsing MS?
Carolyn: STAY ON TREATMENT! No matter how well you may be feeling, it doesn’t mean it’s time to go off treatment. You should continue to stay on treatment, as prescribed.
Ted: Get on a DMD therapy as soon as possible after a relapsing MS diagnosis, and then STAY on your treatment as prescribed by your doctor!
Christy: The best piece of advice would have to be the importance of staying on therapy, as directed by my doctor.
These comments reflect the personal experiences of three MS LifeLines Ambassadors who are living with relapsing MS. Results and experiences vary from patient to patient. It is best to contact your doctor to discuss what's best for you.