Am I an MS ‘Outlier’?

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My speech therapist calls me a multiple sclerosis (MS) outlier based on observation and on anecdotal reports from me. Let me tell you what I told her. I Get Better as the Day Goes On I get better as my day goes on, not worse, not devoid of energy. I do need to “reset” myself and my brain after lunch with a power nap for 20 minutes, during which the body refreshes itself and so does the mind. I am just amazed that my body and mind need less than half an hour to reset, sort of like restarting a computer. I just know that any longer than 20 minutes would make me groggy. Why I do better as the day goes on is a total mystery to me. My early mornings are very difficult, but as soon as I go through the motions of grabbing the bars in the bathroom and toileting, it’s as if all I needed was a dress rehearsal to make me independent for the rest of the day. It’s as if sheer grit takes over, with a “Show me what you got” philosophy and an emphatic, “You can do it!” I Have Insight Into My Energy Level and My Fatigue Level Another thing I explained to my speech therapist is that I have insight, meaning I can tell how things will go before they happen. I can tell if I have enough energy to complete a task. I also have insight into my fatigue level, almost as if I had a gauge. Actually, none of this makes me novel, because many people with MS have figured this out. But the second point about insight is something I would like to explore, because it is not cut-and-dried. My speech therapist said it would be great to be able to bottle up this insight, but alas, that is not possible! I also notice that my insight does not waver as much when I have energy. In other words, I don’t have to think as much when I have energy: Everything is more straightforward, and I see things more clearly. An example of this is how after my power nap, I am able to turn over onto my stomach without thinking. If I had to do the same motion before my power nap, I would tend to overthink turning onto my stomach. A simple motion like that becomes a big deal. My level of brain fog before the power nap makes thinking more difficult. My Insight Is Affected by My State of Mind My insight is also affected by my state of mind. I don’t make important decisions when I am in a low energy state. Once again, what led me to all this is insight! It’s so curious how it comes about. Insight almost seems as powerful as energy! Insight is most powerful when I have a lot of energy. It is weaker when I have less energy. It is a simple as that. Insight is a very powerful tool. I wonder if all persons with MS are aware of, or have, insight. Maybe one has to be very in tune with oneself to have it? This would make a great study. Personally, I can see wisdom being an important criterion for the study. How I Wake Up My Brain in the Morning As I mentioned earlier, mornings can be tough for me. Sometimes it feels as if my brain is still asleep, and my insight has not yet kicked in. To deal with morning, my speech therapist suggested the following: Focus on an area, and state five things that I see. For example, mirror, dresser, painting, hair brush, and diary. This helps to jog the brain into awareness. On a recent morning, I neglected to do this exercise. I tried to stand up at the bars by the toilet and almost fell off my chair. Clearly, I was not ready — with or without insight. This is an exception to everything I have said. Insight must be another tool that I make work for me. It is good that I realized this. Apparently, once I uncovered this tool I’m calling insight, it is with me for the rest of the day. With MS, I Have to Work at Everything With MS, nothing seems to come naturally. I can always assume that I have to work at everything. I know from experience that my own limbs will not save me if I fall. So while other people can exercise my legs passively, I have to know to use spasticity and strength to stand up when I need to. In short, I need to take what I can from the help I receive from others, then figure out how to make it work for me. After all, I know myself best.

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