Having multiple sclerosis (MS) can sometimes make those of us living with it feel powerless. After all, the condition is progressive and unpredictable, right?
And if the disease advances to secondary progressive MS (SPMS), a whole new level of uncertainty can exist.
We get it. Both of us have lived with the disease for the past two decades. Jennifer lives with SPMS and Dan lives with relapsing-remitting MS. Either way, there’s no telling what MS will do to us or how we’re going to feel from one day to the next.
These realities — the uncertainty, the lack of control — make it that much more important for those of us who live with SPMS to set goals for ourselves. When we set goals, we take a major step towards not letting the disease keep us from achieving what we want.
So, how do you set and stick to your goals when living with SPMS? Or any chronic illness for that matter? Here are a few of the key strategies that have helped us to set goals and stay on target to achieve them.
Goals matter to both of us, especially since Jennifer’s MS has progressed over the past 10 years. Goals have focused our needs, mission, and what we’re trying to achieve. Goals have also helped us to communicate better as a caregiving couple.
Jennifer picked up some helpful guidance from her years in WW, the wellness and lifestyle program formally known as Weight Watchers. Here are some of the tips that stuck with her:
- A goal without a plan is just a wish.
- You have to name it to claim it.
Such words of advice aren’t limited to Jennifer’s quest to manage her weight and health. They’ve applied to many of the goals she’s set for herself and goals we’ve set together as a couple.
As you move forward, make yourself solid, detailed, and descriptive action plans for the goals you wish to accomplish. Aim high, but be realistic about your energies, interests, and abilities.
While Jennifer no longer can walk, and doesn’t know if she ever will again, she keeps exercising her muscles and working to stay as strong as she can. Because with SPMS, you never know when a breakthrough will happen. And she wants to be healthy when one does!
Once you have named and declared your goal, it’s important to stay focused and stick with it for as long as you can. It’s easy to get frustrated, but don’t let the first speed bump take you completely off course.
Be patient and understand that the path to your goal may not be a straight line.
It’s also OK to reevaluate your goals as situations change. Remember, you’re living with a chronic illness.
For example, shortly after Jennifer recovered from the tailspin of her MS diagnosis, she set her sights on earning a master’s degree from her alma mater, the University of Michigan-Flint. It was an achievable goal — but not in those first few years of adjusting to the ever-changing new normals of a progressive disease. She had enough on her plate but never lost sight of her desired degree.
When Jennifer’s health eventually stabilized, and after much hard work and determination, she received her Master of Arts in Humanities from Central Michigan University. Nearly 15 years after putting her education on pause, she successfully completed her lifelong goal while living with SPMS.
MS can be an isolating disease. In our experience, it’s often challenging to find the support you need on a daily basis. It’s sometimes difficult for family and friends to provide this kind of emotional, spiritual, and physical support because they — and even those of us living with MS! — don’t fully understand what’s needed from day to day.
But this can all change when we set and spell out the goals we hope to achieve. This makes it easier for people to understand and wrap their brains around what we’re looking to do. And it makes it less daunting for those of us living with a chronic condition because we realize we’re not dealing with it alone.
We both had a goal to write a book about our life with MS and how we rise above the challenges it presents. As if it wasn’t enough to write and pull all the copy together, we needed to turn our sheets of written words into an attractive, meticulously-edited publication.
All of this by ourselves? Yeah, quite a lofty goal.
Fortunately, we have some incredible friends who are professional writers and designers and were wholeheartedly on board with sharing their talents to help us achieve this goal. Their support made the book Despite MS to Spite MS less about just us and more about a shared vision of friends and family.
Most goals can seem daunting at first. That’s why it’s important to write it out, develop a plan, and break your ultimate goal into smaller segments.
Each accomplishment you make gets you that much closer to realizing your goal, so celebrate everything! For example, with every class Jennifer completed, she was that much closer to earning her master’s degree.
Celebrating the little moments builds momentum and keeps you energized and moving forward. And sometimes we mean that literally!
We drive to Iowa each summer to spend time with Dan’s family. It’s a nearly 10-hour drive in our handicapped accessible van, which Dan has to drive the entire time. That’s a long drive for anyone — let alone when you’re living with MS.
There’s always some excitement about seeing family we haven’t seen in a year that charges us for the ride to the Hawkeye state. But our return trip to Michigan can be quite grueling.
However, we’ve found a way to keep everything in perspective. We have small celebrations to encourage us on our 10-hour trek. With every minute we’re on the road, we know we’re that much closer to being safely back home.
Living with SPMS is challenging, but it shouldn’t stop you from having and achieving personal goals. There’s a lot the disease has taken from us, but we think that it’s important to keep our eyes set on all we have yet to accomplish.
Even when it gets frustrating, it’s crucial to never give up on going after your goals. MS is here for the long haul, but more importantly, so are you!