I like some of my MS symptoms better than others. Wait, “like” may be going overboard. I tolerate some of my MS symptoms better than others. Nope, too bland. I despise some of my MS symptoms less than others. It’s not politically correct, but then again, what is these days?
I handle the known much better than the unknown. I know each and every day that I need to use a mobility device. I don’t like having to do it every day, but at least I know. I’ve got the handicapped placard in our cars. I know where my cane is. If I think I’ll need the rollator, then I can just pull it out of the trunk of my car. I know not to wear high-heeled shoes. When I plan social outings, I know that I’ll be taking a mobility aid with me.
My biggest struggles with MS are the unpredictability and loss of control. I make plans, but then my MS symptoms make it difficult if not impossible for me to follow through on the plans. How do I know whether my MS will be cooperating when the day rolls around? What is going to trip me up (sometimes literally)?
Not all of my symptoms are predictable. Weather forecasts only go out so far in the future. I’ve known that since before I was diagnosed, because I never thought that I would get married on a June day in NC that was 60 degrees instead of 90. And I don’t know from day to day – sometimes between morning and evening – whether I’m going to be too fatigued to do anything. Planning has its limits.
Do any of these sound familiar?
– Your favorite band is performing in town. It’s an outdoor concert and the temperature is over 90 degrees. Like most people with MS, you’re sensitive to heat, so going to the concert could trigger symptoms.
– You’re enjoying the TV show, and the killer is about to be revealed. Suddenly, your bladder is telling you to go to the bathroom NOW.
– Your friends have invited you over to dinner. But their apartment is on the third floor and there’s no elevator. The apartment is also cramped that feels like an obstacle course because of your balance issues.
– You go to see a movie, but the theater is crowded. The only available seats are in the middle of a row, and you’ve got to climb a lot of stairs to get to it.
At times like this, it’s easy to throw a pity party. It’s easy to focus on the things you can’t do and feel trapped.
What can you do?
– Plan. A movie theater here in Raleigh not only sells tickets in advance, it has reserved seating. I’ve picked a favorite seat in that theater – up one step, sit on the end. The theater has adjustable recliners so I can shift positions during the movie and cut down my spasticity. And the rows are wide, so it’s easier to navigate. It was so much fun on my birthday to go see Captain America: Civil War and not worrying about where I would sit and whether my family could be together.
– Find an alternative. So it’s not convenient to head over to your friend’s place? You could have them come to you. You can keep it simple by ordering pizza or plan some other kind of easy meal. Pull out the crock pot, or pop a store-bought lasagna into the oven. You could also get together at a restaurant where you know you can maneuver. We’ve had to be creative sometimes with plans, but we can do it.
– Be prepared. Bladder issues? Wear a pad – you’ll buy yourself some time, and nobody will notice. I’ll sometimes carry an emergency kit with spare pants, underwear, and cleaning wipes if I’m worried I still could have an accident while I’m out. Sure, it could still be embarrassing if something happened, but at least I could minimize the damage by changing into fresh clothes.
– Pay attention. Yes, it sucks to miss the good part of a movie, but it’s sure better than wetting yourself. Trust yourself instead of wasting time questioning and negotiating when you know what the right answer is.
– Remember what’s important. Five years from now, will it really be so awful that you missed a few minutes of a movie? Are your friends invested in your friendship enough that they’re willing to accommodate your health so that you can get together? When I was first diagnosed, I told a friend that there were potential bladder issues that could limit social outings. Her reply? “Honey, we’ll just slap a Depends on you and bring you with us!” Fourteen years later, we still get together.
It may not be easy to make plans because of MS, but it helps to be creative.
