Three Ways To Help With The Emotional Toll Of Living With Multiple Sclerosis
The other day I took a walk with my husband and son in our neighborhood. We live in a wooded area, our street unusually wide, and we are blessed to experience the sights and sounds of nature surrounding us on our casual strolls. On occasion there have been wild turkeys crossing our path, and even a black bear was once seen at a safe distance. Yikes.
We are a close-knit family, and I consider myself blessed that our son chose to commute to college. Not only because I love having him home, which I do, but mostly because he’s thriving at school. Empty nest? Not yet.
This particular day I was mindful that we all were together, but unhappy with the walk. Why? My legs were weak and numb, forcing me to walk a few feet behind them. They were talking and laughing as they tried to walk slower to give me a chance to catch up. But I couldn’t.
I was missing out on the joy of being with them.
I told them to go on without me because, despite their kind gesture, I knew a slow walk wasn’t enough exercise for them. They finally listened to my pleadings.
I became upset with MS.
This is not the first time this has happened, and it won’t be the last. After 28 years of living with MS I can honestly say I hated having it that day.
Over the years I’ve had to compromise being the kind of mother I’ve always wanted to be. I could never play tennis or hike on difficult trails with my son. I used to enjoy cooking and baking delicious meals for my family, not always needing to nap.
Now that I'm older I need to sit and nap more. I also miss out on even more special moments.
These days, in midlife, I have more of a need than years ago to elevate my legs in the evening. At the end of the day fatigue and spasticity wear me down. I’ve tried using our ottoman, but somehow my legs feel best in bed.
I don’t blame my family for not wanting to join me in the bedroom to watch TV or carry on a conversation. We love our Great Room; it's the best room in the house.
So in the evening we are usually in separate rooms. When I’m done writing or reading and happen to hear them laughing or talking I feel wonderful for them. But a little lonely inside.
There are no rewind buttons in life. Once time passes it’s gone forever. I’ve missed out on snippets of time, both big and small, and when that happens, I feel lonely inside.
One year I couldn’t go to Florida to visit my in-laws, our yearly vacation that we always looked forward to. I was having an exacerbation and instead of spending time in The Sunshine State I spent a week on the couch with my cat, my constant companion.
I missed a big family celebration and, again, I was very happy for my family. But I felt lonely inside.
Living with a chronic disease is something you never get used to. Year after year a piece of your emotional self is chiseled away. There’s no road map to follow or magical words to say that will miraculously help us feel better about our "new normal."
What I do if I'm feeling lonely or upset are these three things, which I offer to you now:
Journal: I write everything down that’s bothering me. I make a list of what I did that day and why I'm feeling sad or lonely. When I’m tired I jot down only words instead of full sentences. I think it’s important to get our feelings down, even if it’s for our eyes only.
Managing stress: There are endless ways to manage stress for those times when you're feeling overwhelmed with emotion. Exercise, stretch, read, cook, listen to music or spend time with loved ones (even on the phone.) Experiment with what makes you feel best and, hopefully, it will help you deal better with the emotional toll of MS.
Acceptance: I’ve learned, for the most part, to accept my MS. Acceptance is important in maintaining a healthy attitude toward your “new normal.” Acceptance can help us avoid depression, anxiety or feelings of loneliness.
Accept yourself for who you are, and your self-esteem and confidence will benefit from it. We need courage to face our adversities, so if you learn to accept yourself not only are you courageous, but you’re pretty wonderful, too!
Do you have a fear of needles and take medication that requires injection?