Top Ten Most Frustrating Factors of M.S.

  • 15 March 2012
  • admin

Multiple Sclerosis Awareness Week is this week! In honor of the week, we introduce Julie Brush, a local nurse who is battling multiple sclerosis. Her honest and insightful perspective reminds us of the meaning and driving force behind all of the MS-related events occurring this month and throughout the year.

Top Ten Most Frustrating Factors of M.S.
By Julie Brush

I am not a survivor of a disease. I live with a disease, one which will never have an end. Here are a few major hurdles people living with M.S. have to cope with on a daily basis.

1. The road to diagnosis can be long, draining, scary and expensive as you try to make sense of a myriad of symptoms. You may wonder why your left foot is dragging or why you feel like the room is tilted or why your legs are numb. These are just a few of the symptoms that can be present prior to diagnosis.

2. Most people don't realize that MS is one of the most expensive diseases to treat. Since there is no cure and no chance of beating this disease, you must spend your life maintaining it and these costs can be astronomical.

3. Once you are diagnosed with this disease, someone you know will inevitably say, "But you look okay." This is a frustrating statement to hear and there are books on how to cope with this kind of attitude. While you may appear fine at that point and time, symptoms of M.S. can shift and progess day to day and even hour to hour.

4. Since so many symptoms of M.S. are invisible, i.e. pain, numbness and tingling, oftentimes your family members, loved ones and coworkers may think you are malingering. Rest assured the community impacted by this disease intimately understands the gravity of your symptoms, invisible or not.

5. Choice of treatment is a huge decision that can have several outcomes. Deciding treatment modalities like whether to use an injection, infusion or oral medications to modify the progression of the disease can be an extremely long and daunting process.

6. Symptoms can change from day to day,hour to hour and many times,within a matter of minutes.

7. Oftentimes, you can go through the five stages of grief on a daily basis. (Only a person with M.S. understands this).

8. It can hard to cope with the loss of the things you used to do and love along with constantly trying to figure out ways to modify the things you once loved, again. Whether it's running, biking or even walking, you're never sure what will happen next to impact the life you've always known.

9. The sheer unpredictability of the disease and the fact that there is no cure can be unbearable.

10. Going to bed each night,wondering if tomorrow will be the day you will wake up and not be able to walk.

_Editor's Note: Photo credit: Hugh Thompson_