Right now, I feel as though multiple sclerosis (MS) has taken over my life. The devil is staring me in the face all the time. There is no way to explain how my life is continuously changing, and 37 years with MS really sucks. But as I soldier on, I try to remember that I am not the only one in this predicament; also, there is always someone in a worse condition than me out there.
It’s Hard to Say Exactly When Things Changed
People ask me why I cannot do certain things, such as stand, put on a jacket, or wash my hair in the sink. I do have an answer to each one of those scenarios: Pretty much every one is because of cerebellar damage or fatigue.
But the people who asked are correct, because I used to be able to do those things — at least I could five years ago. A person even asked me why I'm building an addition to my home, when I have lived in the house with no problem for so many years. These are all valid questions and observations.
Too many people may think that what I go through may seem like denial, but I see it as acceptance. Denial, because I carry on; acceptance, because I do it well. But with life going on around me, it is hard to say when all the changes being observed even happened.
The other day a friend and I talked via Zoom. My friend also has MS. We decided to record our conversation for future use. Later, I watched the video and observed myself. I witnessed that I was struggling with cerebellar tremors — not horribly but they were noticeable.
I continue to ask myself: When did these changes even happen? I need some way to know how things have changed over these many years from 1986 to now. So I have thought of a few things that I definitely used to be able to do and now can't.
Why Don’t I Wear This Robe Anymore?
I needed to start with everyday activities to notice changes. I have noticed during the past few months that I have not been wearing my favorite fleece robe. The weather is chilly, and that robe was my favorite go-to robe.
So I took the robe out of my closet and wore it. Right away, I noticed that the robe was too long and interfered with most things I did. I started thinking, it is interesting that was never a problem before. The robe never seemed too long, and I never had trouble going to the bathroom and negotiating the length.
Now the robe is so problematic that I don't wear it anymore. Wow, my favorite robe is no longer a constant in my closet. That is a huge and noticeable change.
Why Didn’t I Write Christmas Cards This Past Year?
As I was putting away Christmas cards, I knew I had not sent any cards this year. I knew why, but I refused to believe why.
The answer is that I have lost my fine motor coordination ability to write. A task that once seemed easy and comfortable enough is now impossible to do.
In the early 2000s, when I was in graduate school, I attended seminar after seminar and did a lot of writing. But now, two decades later, my writing is unrecognizable. In other words, I have lost my unique penmanship. That breaks my heart.
Normally, one just writes, because this is a preplanned motor activity. However, when neural connections are impaired, the motor activity is altered.
I even bought a built-up pen meant for individuals with Parkinson's and arthritis, so that the grip on the pen is comfortable. I use this pen on a regular basis. However, although it is comfortable to write, it is hard to make basic movements.
My occupational therapist friend, Roxanne, suggested that I occasionally close my eyes when I write. I know it sounds strange, but her reasoning is that I would use preplanned motor planning to write, without interference from the eyes and brain. The motor plan is already there, and this way, I use my fine motor skills to unveil it. I have been trying this activity with my eyes closed, and it seems to work amazingly well.
When Did I Stop Building Fires or Washing Dishes?
When it comes to making or maintaining a fire, I am not able to do things that I used to do. Anything requiring standing is not possible. In the past, I used to pile a bunch of logs on my rollator and bring them to the stove. I do not have the motivation to even try that anymore, because I could fall.
I can do some things sitting down, but I first have to make sure I am not too fatigued. This could include grabbing a log, but the physical demands of lifting the log and putting it in the stove with the fire roaring are nothing short of daunting!
These activities often depend on the time of day. For example, mornings and night time are better than afternoon, when fatigue is the worst.
At the moment, I am waiting for a power wheelchair with elevation ability. This way, I can reach the sink to wash dishes, which at the moment, my partner is doing at every meal. Standing at the sink has become impossible and difficult. I must really have taken a nosedive or, in disease terms, had a major flare-up. But all this took years and did not happen overnight.
These Changes Sadden Me, Even as I Press Ahead
The robe and handwriting examples just make me sad.
Without a doubt, my energy and stamina have decreased. My muscles definitely seem weaker. True to the disease process, the muscles are innervated by weakening nerves. Therefore, I am on track regarding the MS disease process. I certainly don't like the process, but I have no real way to slow it down.
All of this is very tough to articulate, because this is a loss like no other. Year by year, parts of my body are being chopped away. The upside — yes, there is an upside — is that I know it's happening, and with a little positivity I can plan and learn ways to deal with this onerous situation.