There are days in my life with multiple sclerosis (MS) when I play question-and-answer games with myself. I have found this to be a way to clarify and rationalize my actions, thoughts, and confusion surrounding this disease.
Years before I was diagnosed with MS, in 1986, I met a person with advanced MS who said to me, “Physical issues are easy; it’s the rest of it that you need to figure out.”
I didn’t pay much attention to this comment at the time, other than thinking, “What the heck does that mean?”
Well, here I am, 31 years later, and I have a pretty good idea of what that means.
The Challenges of Aging With a Chronic Illness
Like many others, I live life with many issues on my plate, the main one being aging with a chronic illness — this puzzle called multiple sclerosis. At times I feel I am aging with an entire room full of puzzle pieces that don’t fit my question-and-answer game. This has definitely affected my sense of self.
I am pretty sure that by a certain point in one’s life, one has a good idea of who one is or who one has become. But when you live with MS, the daily question “Who am I?” follows you around like an unshakeable shadow.
My life now is so fluid with this mercurial condition that rarely is one day like the day before. Within this paradigm, I use the puzzle pieces to put together a picture of who I am and who I continue to become, even as my sense of self constantly changes.
The Visible and Invisible Parts of Multiple Sclerosis
As I see it, there are two distinct parts of MS that I deal with on a daily basis: There is the part others in my life see, and there is the part they don’t see.
It’s hard to explain to oneself that within the disease itself there are two parts that require one to be able to figure out how to be. I guess that would include the “rest of it” referred to by the wise person who walked this path before me.
The internal MS that no one but me is privy to includes the “good day, bad day” syndrome. How can anybody explain this phenomenon medically? On a certain day I can barely stand up in the shower, and on the next I have no trouble standing and closing my eyes to shampoo my hair. Nothing that I did during the day was any different from the day before, including the amount of sleep I got. So what affects that balance in the shower? I have no answers to this quandary; it is another piece of the puzzle.
The Interdependence of Balance and Fatigue
There are days when I feel better but cannot say why it is that way. But I have a feeling that balance and fatigue must depend on each other in some way. Maybe I am not cognizant of fatigue on a certain day, so my balance is affected.
Balance and fatigue are among the things that I feel internally with no way to predict how the day will go or how I will feel hour to hour. On most days I need to mentally rehearse my steps before doing an activity to make sure I can do it. It’s definitely not automatic. Interestingly, I can definitely feel within me whether I have enough energy to do an errand.
Balance, fatigue, and brain fog are daily internal companions of my MS that are missed even by people close to me.
On the other side of the same coin, I am confronted by “external” forces that are obvious to everyone around me, such as gait, speech, cognition, and humor.
Taking Small Steps, Enjoying Small Rewards
I start my day with an agenda in mind, never knowing how far I will get with my plan, so I try to accomplish small steps. This way I enjoy small rewards.
I will often dress for some occasion or other, knowing I look sharp but not truly sensing that feeling within me, because I am dealing with so much more than the way I look.
As time goes on and the years go by, I seem to live less day to day than hour to hour. Depending on the internal and external forces, I plan my time while recycling my sense of self.
I look at the changing seasons, a tapestry of colors in the field behind my house. Time is my friend, and nature my guide to help me figure out who I am becoming and the journey it takes to get there.