The Multiple Sclerosis Tapestry: Interviews with People Whose Lives are Affected by MS

What meds, treatments, or alternative therapies have helped you the most?

I found that massage therapy and chiropractic have helped with tingling and numbness as well as the spasms and Lhermitte's.

Since starting Copaxone in 1999, I have not had a major attack so I credit it with slowing the progress of the disease. 

Do you have a personal philosophy that has helped you to cope with having a chronic illness?

Somehow I know that the "universe" will give me everything I need... eventually.  It may not be what I want and it is rarely provided on my timeline, but is always what I need, even if it is simply the strength to get through one more day.  It is this strong faith and trust in a divine universal power (which has no name or form) that sustains me. 

I see myself as a student who is constantly being challenged to learn about my strengths.  This philosophy keeps me curious, and keeps me from feeling like a victim.

What advice would you give to someone who has just been diagnosed with MS?

Learn!  Learn all you can about the disease and your body because you have to be your own advocate.

You are stronger than you know.  Maybe not strong of body, but strong of character.  You don't believe me now, but you'll surprise yourself when you discover what you can overcome, especially if you are armed with knowledge. 

Learn to ask for help.  The National MS Society (NMSS) and Multiple Sclerosis Association of America (MSAA) are great resources to get you started with a caring, supportive community of people who understand.  They can help you to connect with resources and others who can help.

Accept that your story is going to be unique and different from anyone else's story, but you are not alone.

What is the worst thing about this illness?

For me, the worst thing is the fatigue.  Because the fatigue is unpredictable, it's hard to plan my life when I don't know if I'll be able to get out of bed tomorrow.   Some days I'll wake up feeling great and commit to doing things, then a few hours later I'm exhausted for no reason. 

Because fatigue is invisible, it's hard to explain to people why I suddenly can't do something.  After a while, I begin to doubt myself and become my own worse critic, telling myself that I'm just lazy and using MS as an excuse.  I know that's not really true.  But when I'm tired, I forget. 

Fatigue is not caused just by muscle activity like running or walking; it is also induced by brain activity.  I can become exhausted after trying to solve a problem, even if I'm sitting down the entire time.  Being in a room with a lot of activity, such as a meeting or visiting family at the holidays, wears me out completely.    If there is too much stimulation, I'll be exhausted in no time and for a long time.