“But you look so good!”

September 4, 2012

I was invited to be a guest on a radio talk show to discuss multiple sclerosis and living with it. This was the first time I ever did a radio talk show, so I was a bit nervous. There was no audience to speak to directly, and I had to keep in mind newly learned instructions about cues, minutes, red lights, etc. so at times it was a challenge to stay focused.

As the saying goes, hindsight is 20/20. When the show was over, which flew by quickly, I was dissatisfied with myself that I did not give adequate attention to fatigue and those invisible symptoms during the discussion.

When someone looks at me, I look terrific and normal even though I am sitting in a scooter. A guy in the studio was shocked when I told him I couldn’t walk at all. It got me thinking that when it comes to a person with MS being disabled, the impression is that “you don’t look disabled” which then sometimes implies why are you on disability?

After returning home and thinking about this, I took out my webcam and created a video about how disabling fatigue and other invisible symptoms are. Here is the link: http://www.youtube.com/watch?v=rnd1MrkH0vE&feature=plcp  It shows my true colors at a down moment—quite a contrast from my usual upbeat self.

In an earlier column, (April 30th) I talked about invisible symptoms. It’s worth repeating parts of it again:

On the outside so many of us look good unless we have some kind of walking aid to indicate otherwise. We’re not bleeding, we have good color in our faces, and we are not coughing or blowing our noses. When we look good, people automatically assume that we are good. I’m in a wheelchair, but I still look good and completely normal. If I would use a store’s scooter instead of my own, I would get dirty looks. I’m misunderstood.

But very often we are not good because so many of the symptoms are invisible. Pain, tingling, numbness, fatigue, dizziness, tightness, depression, blurry vision, balance, coordination—the list is endless. These symptoms interfere with everything we think, say or do. They are annoying; they hurt; they are frustrating; and they make us crabby. For persons with MS that do or do not show visible impairment or walking aids, these symptoms are very disabling.

Fatigue is the hallmark symptom of MS. It is a universal complaint by over 90% of MS victims. It doesn’t matter if the case is mild or advanced. It doesn’t matter if one had a good night sleep or if the MS is not currently active. Fatigue is always present with MS, 24/7. Why? Fatigue exists because MS is a disease, a chronic illness that causes other symptoms such is walking problems to intensify. Constant fatigue leads to our moodiness or depression. Often we can combat fatigue by pacing our activities, taking frequent rests, or letting others do things for us. But it doesn’t always work.

MS is an unpredictable neurological disorder. New symptoms can appear and existing symptoms can intensify when we least expect it. We never know how long these disturbances will last, how severe they will become, or if they will go away. A new symptom that doesn’t go away requires an adjustment to accepting it and learning how to live with it.

We live a life of uncertainly.

www.DebbieMS.com