Learning About Life With MS
I’ve discovered many things since my long journey dealing with multiple sclerosis (MS) began over 23 years ago.
How MS Affects Everyday Life
I suppose that in order to really understand how much has changed in my life, and that of my family’s, requires traveling back to some of my childhood memories. I was raised by loving parents who had both been members of the Armed Forces.
Dad was in the Air Force. Mom was in the Navy. They ran a very tight ship; somewhat lenient but very organized. I distinctly remember one particular statement being made by both of my parents frequently: "A place for everything and everything in its place.”
I have to admit that even as an adult that saying is ingrained into my mind. It probably always will be. I guess you could say that I’m a neat freak; before I was afflicted with MS I had a definite routine.
Clean the house on Monday, do laundry on Tuesday, run necessary errands on Wednesday, clean the refrigerator on Thursday, make the shopping list and grocery shop on Friday.
Once I was diagnosed with MS all of that changed. I can no longer accomplish any of that myself; my husband does all of it in addition to working full-time.
Over the years I've learned to deal with my inadequacy that was brought on by MS. Well, most of it anyway. I still have my tough days, regrets, doubts and weak moments. I'm sure I always will.
These are somethings I've learned along the way:
- Allow yourself to be imperfect
- It's okay to ask for help
- Find ways to contribute
- Accept imperfection
MS Has a Mind of Its Own
A while ago I had surgery to remove my gallbladder. I wasn't concerned or frightened — I've had many surgeries in the past, including a mastectomy.
I did experience something my surgeon had warned us about; she said occasionally MS patients have a reaction after being under anesthesia. They often experience uncontrollable spasticity.
I, of course, am one of the unfortunate ones who experienced this complication.
After my most recent surgery, I am definitely experiencing spasticity. It is totally involuntary and uncontrollable. My husband and I go through the same thing every night.
He rolls me on my side facing away from him, and my right leg quickly bends toward him. This leg, along with the other one, hasn’t been mobile for many years.
I've done countless research concerning spasticity. I've learned about possible causes, treatments and medication that may help. In doing this research I’ve learned that many people, with and without MS, are afflicted with spasticity.
It's comforting to know I'm not alone. I'm not some kind of "freak." There are many diseases that cause spasticity, but just as there are causes there are also many treatments.
When you have MS, it’s important to accept yourself as you are and accept your diagnosis. Even more important is to accept you aren’t alone; there are many people like you out there who are going through similar experiences. This is perhaps the most important lesson.