MS on a Good Day
I recently woke one morning to the gentle sounds of steady rain. Its soothing melody beckoned me to curl up by my window. The sound of water pouring from the gutters and through the trees muffled out all other sounds in the world. It transformed my home into a cozy cocoon.
I felt safe and warm. Nothing but the promise of a great day entered my thoughts. It was at that moment that I remember thinking, "Yes, but I have MS."
Like a needle scratching across a record on a turntable, I jumped out of my blissfully, pleasant groove into a lackluster standstill. I ended up feeling bad where just seconds before, I was merely a person enjoying the rain. I wondered if other MS’ers experience this kind of moment. When did it become not ok, to feel ok?
I cannot deny the phrase “Yes, but I have MS,” underscores many of my thoughts and deeds throughout the day. This does not bother me in most instances. I find that it serves as a gentle reminder of my efforts to maintain a healthy life balance. It helps me regulate my levels of activity, and it keeps me in check as I set my expectations for the day.
“Yes, but I have MS," and it has an ugly side, however. It messes with my feel-good days.
Cinderella at the Ball
Healthy days for me are like Cinderella’s attending the ball. I sometimes feel like an impostor seeking a scant few hours of great acceptance in the world before I’m transformed back into my real identity.
I feel awkward in my skin, wondering if anyone is questioning why I suddenly look so healthy and I wonder. Did Cinderella ever felt just a little bit guilty or self-conscious about faking it a bit?
The thing is, we are not Cinderella.
We genuinely do float across a few different worlds according to our levels of MS intensity. Not everyone is going to understand this. Some people will wonder why it was only last week they saw you in a wheelchair when now you are upright (albeit not perfectly so).
I, myself feel awkward at times and I think to myself, maybe I should say to them, ‘you should have seen me yesterday, I could not even move.'
I have never been one to worry about what others think of me. Even though I have purple hair, I break fashion rules every chance I get, and I'm the type of person who doesn't make excuses. This kind of self-consciousness entangled with misplaced guilt was not sitting well with me.
Feeling guilty about feeling great is like wasting the last day of a dream vacation worrying that it is almost at its end. Stop wasting a perfectly good day thinking about the next. Stay on vacation. Make the most of every second. There will be plenty of time to focus on going home when you are going home.
I chalk this all up to another lesson learned in being present in the moment while staying in one's own experience. I’m going to work on avoiding falling into guilt or worry traps on good days. It is not my job to prove to anyone that I have MS on any given day. More importantly, I do not need to remind myself I have MS every waking moment of my days.
It is All a Part of Who We Are
MS is a moving target. We have bad days, good days and everything in between. Feel-good days can be bittersweet. They can remind us of our healthier pre-MS days. They can also cause a bit of melancholy, since a good day or two may be all we get. Good days can even leave us second-guessing ourselves. We may reason, “if I can enjoy my day this much, maybe I’m not as ill as I say I am.”
It is easy to fall into guilty or conflicting thought patterns when ‘all feels right with the world.’ One thing is for sure, however. MS symptoms will be back. We will be reminded on no uncertain terms that feel-good days are precious.
Avoid at all costs, over-thinking or over-analyzing what is merely a good day. Give yourself permission to enjoy it.
Don’t waste a moments time feeling guilty. You are not Cinderella at the ball. This is you, living your genuine life, embrace it. Don’t worry about what others may whisper before the clock strikes midnight. Hold your head up high and enjoy the dance.