Guest post: What It’s like Living with Multiple Sclerosis by Karen Lanzetta
I am Karen Lanzetta and I am living with Multiple Sclerosis, a neurological disease that attacks the myelin sheath (which helps speed nerve conduction) surrounding all neurons in the nervous system. I have had it for decades, but wasn’t diagnosed till Halloween 2017 (which felt fitting for a zombie disease where my immune system is eating my brain).
Symptoms of Multiple Sclerosis
For me, the biggest symptoms are fatigue, balance and gait issues, and heat intolerance. It was actually a relief when I finally got diagnosed because now I knew what was going on and how to best deal with it. It didn’t take long before I started so-called disease-modifying medication and physical therapy. Some of this medication is injectables, which freaked me out, but it actually was surprisingly easy and I did get used to it. Still, it was nice to switch to an oral one six months ago.
Even with MS, we still live a full and satisfying life. I have a very supportive husband, and we have eight children between the two of us. We love to travel the world and explore new destinations and old favourites. We have family and friends “everywhere”. My biggest challenge is that I have lost a lot of strength and endurance. We love to hike, but there have been numerous hikes where I have to turn around long before I had hoped. I get tired sooner than the average bear, so I sometimes end up in tears, frustrated with my limitations. Often, I have had to rely on family, friends and even strangers when I wasn’t able to walk and needed someone to lean on.
Most likely, also thanks to MS, I deal with an overactive bladder, which means that I am always thinking about the closest bathroom and have to balance keeping hydrated with not having to pee all the darned time.
History of my Multiple Sclerosis
Twenty years ago, after a satisfying career at IBM, I decided to stay home and raise our family when I was pregnant with my fifth child. Unknowingly to me, my MS was already active, mostly manifesting with pins and needles in my hands and feet, but I also started to have balance and fatigue issues. Looking back, I wonder whether I would have wanted to be diagnosed in my twenties when my symptoms started. Yes, I would have liked to know, so I could have slowed down the disease thirty years sooner and have less disability now. On the other hand, I am not sure that I would have chosen to have children due to possible complications with MS and pregnancy, and it is hard to imagine my life without our current children.
How I deal with my MS now
At this point in time, I don’t think I am able to work full time anymore. So instead of working full time, I started a travel blog Our Carpe Diem to share our stories, both about travel and about multiple sclerosis. I would love for other MS warriors to know that their life isn’t over after a Multiple Sclerosis diagnosis.
When I know I will be walking more than I can without support, I use hiking poles for support. I chose hiking poles instead of a cane thanks to my physical therapist who pointed out that this makes me look sporty instead of handicapped. When I am out and about, many strangers ask “what mountain are you going to climb?” so I happily reply with humorous answers like “I am training for Mount Everest.” One thing I would have liked to have known before I got diagnosed is what a huge difference physical therapy can make. Also that you can regain function with the right exercises. That it is not all downhill from here. That there is a lot of support for MS patients, surprisingly both from the pharmaceutical industry (copay assistance) and from organizations like the MS Association of America. (cooling vest and assistance with the cost of MRIs)
Conclusion about living life with MS
For me, the most frustrating thing about Multiple Sclerosis is that there is no cure. I use medication to slow down the disease and I make adjustments like cooling vests and exercise, but I will never be cured. On the other hand, my quality of life is excellent, and I am slowly learning what modifications/accommodations I need. I am blessed with the best husband in the world, an extensive network of good friends, dear family and online support. Of course, there is my worry that the illness could progress and get worse over time, but we all know that there are no guarantees in life for anyone. So I like to live by the motto “Carpe Diem!” Seize the day, live every day to its fullest.
Maybe you have heard the joke “An MS patient walks into a bar…”
“and a chair, and a table, and the wall…”
That is me 🙂 So yes, I drop things, I stumble, fall, cry, walk into walls more than I would like to admit. But I also hike, exercise, get stronger, practice yoga, pilates, watch birds and enjoy every single moment of my life. I live my life, not my MS and I hope I can inspire others to do the same.
Please feel free to ask me any questions about living life with Multiple Sclerosis.
Where to find Karen online
Our Carpe Diem blog: https://ourcarpediem.com/