As a romance author living with multiple sclerosis, I sometimes feel like I’m living my own romantic comedy where the heroine keeps tripping over her own feet.
MS is a rollercoaster—just not the fun kind. It’s more like an old rollercoaster that keeps you upside down for longer than necessary and you spend the entire ride wondering if this is the time it breaks down. You get off feeling nauseous and dizzy, with a headache and wobbly legs.
But it’s not all bad—I promise. I’m just one person living with MS. It’s a snowflake disease, and no two cases are the same.
So, in honor of MS Awareness Month, let’s take a look at what it’s like for a romance author. This one in particular.
MS is a chronic autoimmune disease that affects the central nervous system, causing a wide range of symptoms such as fatigue, muscle weakness, pain, and cognitive issues. But despite the challenges, I’ve found that my writing has been a source of strength and inspiration.
One of the biggest challenges of living with MS is managing my energy levels. Fatigue is a common symptom, and it can make it difficult to concentrate on writing for long periods of time. I’ve always been a fast writer, but I’ve noticed the need to slow down in the last six months or else I feel like I’ve been hit by a truck.
Memory problems go hand in hand with fatigue for me. The number of times I’ve had an idea for my books and couldn’t remember it thirty seconds later is criminal. You know that feeling when you walk into a room to get something and next you know, you’re standing there, staring at the four walls and wondering what the hell you’re doing? Yeah, it’s like that but all the time.
Silver lining: I’ve learned to use it to my advantage when my husband wonders why there’s so many Amazon packages arriving to the door. “It must be the MS,” is my usual go-to catchphrase.
Then there’s the muscle weakness. Like all those times I’m writing a steamy chapter and my fingers decide it’s a good time to go numb or shake uncontrollably so I need to record it into my phone or I’ll forget. You will never know true awkwardness until you’re sitting on your own, describing a spicy scene out loud for the first time. Let’s just say it took a while to get used to that one.
My point is, no matter what, there’s a way around. It takes some adjustments, but you will adjust.
Everyday is different. I’m under no illusion that just because today is good, doesn’t mean tomorrow will be. It’s like a game of symptom roulette. For me, the fear has been the hardest part. The fear of the unknown, the fear of pushing my body harder than it can handle and the consequences that can bring, the fear of where I’ll be in ten years.
It took me a little while to realize it doesn’t need to be that way, and fear can be a motivator. It’s trial and error, and it all takes patience.
That’s the best advice I can offer for anyone with MS or any other chronic illness: be patient with yourself. Be kind to yourself. You’re allowed to get frustrated and angry. It’s natural when your body doesn’t do what you want it to do. But you’re also allowed to live. You might need to slow down a little and learn your limits, but it’s still your life to live. You’re allowed to enjoy it.
Life might not be what it was. Things will change.
And that’s OK.
You’re still you. Just some days you might be a more unbalanced, forgetful you.
Despite the challenges, I’ve found that writing can be a source of comfort and inspiration. Writing allows me to escape into a world full of romance and adventure.
If you’re living with MS or another chronic illness, here are a few tips that helped me on my journey.
- Take care of yourself: Self-care is essential when living with a chronic illness. Make sure to prioritize rest.
- Use tools and technology: Living with a chronic illness can be isolating, but it’s important to stay connected. Join an online support group, reach out to friends and family.
- Don’t be afraid to ask for help: Reach out to your local MS Societies and support groups. I’m currently working with MS Ireland’s MoveSmart programme. It offers specialised, tailored, symptom-specific online exercise programmes for participants living with MS, grouped by age and stage in their MS journey.
- Write: I don’t mean this for just authors. Keep a journal or start a blog. Your words have the power to uplift others, and to make a difference.
This MS Awareness Month, let’s embrace the humor and keep fighting. Because as long as we have that—oh, and a comfy pair of pajamas—we can conquer anything, even MS.