I was just on one of my favorite blogs, http://www.everydayhealth.com/blog/trevis-life-with-multiple-sclerosis-ms/, by Trevis Gleason. I read thru his posts, comment on very few (I am more of a lurker) and can understand and agree with much of what he writes. His positive attitude and his everyday experiences makes me feel like I know him. We both have MS, that’s true, but I like to think that I share his philosophies.
His latest post was about saying “no”. This is one of the most difficult things that those of us with MS, or any illness, has to face. Being tired, weak . . . most healthy people don’t understand why we sometimes have to say, “No thanks. I really need to rest tonight.” And let’s face it, most healthy people will say to themselves, “What’s the big deal? I’m tired too but I still can manage to go out to dinner (or a movie, or a cocktail party, etc., etc.)”. And trying to explain it to others is almost impossible. I have heard the tone in people’s voices when I say I am tired. They think I am making up an excuse, or just don’t want to go. A quote from Trevis’ blog sums it up nicely, “Beyond the most prevalent multiple sclerosis symptom of profound fatigue, there is one other “symptom” we have all, likely, experienced: having to say “no.” ”
I feel that when others are depending on me, waiting for me, expecting me, I can’t let them down. So I end up doing too much, pushing myself, stressing myself and then I pay, and pay and pay. Days of IV steroids, pills, rest, being all over miserable.
But that’s life with MS. The unpredictability, the uncertainty. How do I know to slow down when I’m doing too much when I don’t know what too much is?