A Tangled Orange Ribbon
A Tangled Orange Ribbon
Thriving with MS
If you’ve been around for a while, you might know me for my misadventures in quilting and homemaking. If you’re new here, I’m still up to the same thing. However, in the past, I’ve tried to compartmentalize my life to keep multiple sclerosis from creeping into every aspect of my life.
I’ll give you a hint…that didn’t work too well.
I’ve spent most of my adult life living as a single parent with multiple sclerosis (MS). If it isn’t obvious enough, that means I’ve had a lot of challenges to overcome and some limitations to accept. It also means that I’ve had to face some feelings I’d rather never admit to having.
Yet along the way, in a world of uncertainty and isolation, I found a new focus. It may appear to be a tangled mess, but it’s my mess all the same.
I learned to deal with those feelings of loneliness and ambiguity by focusing on a few things: purpose; gratitude; perseverance; acceptance; creativity; dreaming big; and, living simply.
Bear with me if that all seems quite hokey to you.
Give me just a moment to explain.
I’m certain of my purpose in life. It’s ingrained into who I am, and I have always had knowledge of my purpose. That isn’t to say I have a clear direction, but I’ve had my life’s purpose on my heart all my life.
What is it? My life’s purpose is to…
…serve others with a grateful heart.
I’ll admit that isn’t always easy to do, especially as a single mother with MS, but there is nothing vague about my purpose. It’s written on my heart and I know that every decision I make needs to honor that purpose. I can’t do that if I’m sitting alone wallowing in self-pity and insecurity.
It’s easy to notice inability and lack when living with MS.
I can either focus on scarcity and lack, or I can appreciate the blessings in my life.
I might not be grateful for pain and fatigue, but both have forced me to slow down and enjoy an otherwise complicated life.
I prefer to feel strong and healthy, and at the moment, I can no longer run 6 miles, 6 days a week. However, I can go for a short walk and enjoy nature all around me.
Being thankful and appreciating life allow me to live well with MS.
Never give up.
That’s what my parents always taught me.
There have been many moments where I want to throw in the towel. Yet I have two kids that depend on me, and they need to see that I can do anything I set my mind to.
Nah, I’ll openly admit that a good portion of that might be solidly grounded in obstinacy and stubbornness.
Endurance or tenacity sound much nicer.
Whatever the reason, there is a drive that can only be found in doggedness. I’d reason that it is based on devotion to my life’s purpose and nothing less than that.
I have a tendency to want to retreat to a world of my own making and stay stuck in my head. Anyone with MS, or another chronic illness, might understand how that can be safety and security in an unpredictable world. I’ve had moments where I’ve felt angry and lonely living with MS. I’ve had moments where I’ve felt scared of what might lay in store for me in the future.
Acceptance isn’t simply toleration. Acceptance is coming to terms with the realization of the truth that living with this disease process is a challenge.
Yet it’s a challenge I can face. Acceptance is willingness to believe that I can thrive despite this diagnosis.
I believe creativity fosters inspiration for passionate living. It challenges your visions. It forces inventiveness and resourcefulness. Creativity breaks down the boundaries and limitations of chronic illness.
It’s hard to imagine life without chronic, daily pain and debilitating fatigue. It’s next to impossible to remember what it feels like to have strong muscles and know I can keep up with others.
Yet ingenuity and imagination can write stories and create beauty that fuels a furnace of creativity. Rather than focusing on MS, and its destructive nature, order can be found through writing. Painting can add color to a dreary moment. Stitching can add a bit of solace in a world of uncertainty.
If you have MS, or another chronic illness, you might know that dreaming big is just hard.
It’s something that not everyone can understand.
It’s hard to dream big when you wonder if you’ll be able to walk a mile when you wake up the next morning.
It’s tough to dream big when you have a huge long-term goal, but know just a trip to the grocery store can be arduous.
Perhaps it’s the most furtive portion of life stolen away by this disease.
The disillusion of dreaming big and setting goals is hardly noticed, until you find that your life plans diminished to simple and attainable, replacing challenging, life-changing goals in a cloak-and-dagger fashion.
I am still working on this one.
I think it will always be a work in progress for me.
Dreaming big isn't easy to do anymore.
Living simply might seem to be a catch-all category for consumers wanting to sober up from over-consumption and shopping binges, or a reason to pare down belongings to less than 100 items.
To me, it’s not having a bohemian wardrobe or diminishing my carbon footprint.
Perhaps it could end up being those things along the way.
Where I’m currently at in life, living simply just means living with passion and purpose.
Living simply is basically authentic living in the moment.
If you made it through all those words, congratulations, and thank you. I'm definitely a bit long-winded. Yet I really wanted to share a little bit about me with you. Moving forward, I'll be sharing more about living well with MS, as well as a lot more about quilting and creativity.