Living with MS

Living with MS can be pretty scary, inconvenient, goofy, sad, lonely…and there can be moments of “why me”?

Living with MS can also give you an opportunity to teach others about how to live your life as fully as possible. There can be blessings when you are able to connect with someone who either has the disease or does not, but wants to learn about you and your MS.

It is important to remember the people who are trying to help you along the way. Your doctors have spent a lot of time learning about MS and pediatric MS. Your family loves you and wants you to be just who you are. Your friends love you for who you are and good friends are not concerned about your MS. All these people want you to live a happy and full life, but they need your help and here’s how!

  • When you are given medications for your MS or your symptoms, it is important to take those as you are told. Some of them take awhile to begin working and others may cause problems if you only take them once in awhile.
  • If you are having some new or old symptoms and are not sure what to do, keep a journal. When did the symptom start?

Can you describe the feeling so others can understand it? Take your time with this and think hard!

Is there pain? Rate it on a pain scale of 1-10.

How much are you sleeping?

What else can you describe that will help others understand?

  • Listen to your body! This is probably the hardest part about living with MS. When you are tired, you need to slow down and rest. Yes, you may miss out on some fun things with friends and family, but you will feel better. THEN, go do fun things when you feel well!
  • Don’t be all alone all the time. It is sometimes easier to just stay home and not try to do things, but that is not always the healthiest option. Invite a friend over to play a game, go for a walk, ask someone to go out for ice cream, have friends come for popcorn and a movie...make the effort to stay connected with others.
  • Don’t be afraid to tell others about your MS! You may not know it, but often people know that something is going on with you and they worry. If you brush it off and leave them wondering, you may not be getting the help, compassion, and understanding you deserve. If YOUR friend was dealing with something big, you’d want to help, right? Let them help you too!
  • Join a support group or volunteer with the National MS Society. There are countless opportunities, all year long, to get involved! National MS Society