Treating MS as a piece of luggage

Guest post by: Kelly-Ann Jones  

When I went to the doctor over a decade ago with a sore back, he automatically sent me to see a neurologist, which worried me. After my tests came back, I remember my neurologist talking about MS while I stared at the Parkinson’s poster that was plastered on the wall behind him. I have MS? I tried to keep a straight face, but my brain was working overtime. What does living with MS look like?   

I had already planned a mission trip to India that month and although I was still struggling with my new reality living with MS, I was determined to go. I had just started taking the disease-modifying therapy, Copaxone, which is a daily injection that needed to stay in a fridge. I knew that it would be difficult given where I would be staying in India, but I didn’t want to miss this once in a lifetime opportunity.  

The mission trip took three weeks and throughout that time, I hadn’t yet figured out what living with MS would entail. I constantly had these thoughts flowing through my mind, but I pushed them away in order to focus on the goal of my trip. I was working with young boys living with polio and although, they were going through tough circumstances, they always had a smile on their face. That experience taught me how to look at my diagnosis and I decided to always stay positive in the face of adversity. That trip to India renewed my love for travelling and meeting people from all walks of life.  

About five years ago, I began documenting my travel adventures, as well as my MS journey, on my Instagram profile @ms.thingsisee. I decided to have a year of “yeses” and I refused to say “no” to anything that came my way. I didn’t want my MS to hold me back and I wanted to celebrate every little win in my life.   

With my MS, I get tired very easily and I never want people to have to accommodate for me on a trip, so I found that solo travelling was the right fit for me. I’m able to give myself permission to do what I need to do on my own timeline. If I need to take a nap, I can do that without affecting anyone else. I’m free to explore the beautiful countries and cities that I visit, at my own pace.  

The first thing I research before going to a new country is if there are other people that look like me, as I’m a solo traveller and a Black woman.  

I don’t count how many countries I’ve visited over the years on purpose. I’m chasing adventures and experiences rather than chasing countries. I also ask myself “have I ever been there before?” as a deciding factor when booking a trip, because I tend to not to visit a country more than once.  

Two of my most memorable trips were in 2019, just prior to the pandemic. I visited Lisbon, Portugal, where I discovered Kizomba dancing, and it became my new therapy. Learning this dance forced me to learn to relax, which has really benefitted in lowering my stress levels. For me to do well at Kizomba dancing, I need to clear my head and pay close attention to my partner.   

Another memorable trip was when I visited Egypt that same year. That was the first time that I’ve ever hired a private guide. Fortunately, my guide was a woman (@its_my_egypt on Instagram) who was so kind to me. She set up sandboarding activities and a trip to the Nile River for me. I felt so safe in her care, and I had an amazing experience.  

Some countries on my bucket list include Spain and Ghana. I was supposed to go to Barcelona right before the pandemic, so I’ve been patiently waiting for the world to open so that I can safely explore that beautiful city. I was also planning on going to Ghana with my daughter and will hopefully get to it soon!  

I’ve been fortunate to not have any major flare ups while travelling. The main precaution that I take while travelling is ensuring that I have a functional refrigerator available if I’m going for longer than seven days, to store my medication. I also ensure that I have a comfortable hotel room and bed so that I’m able to get the rest I need. I understand that I live with MS, I have boundaries, and that’s okay.  

What worries me the most about living with MS is the uncertainty of it all. Will my MS progress? I have a daughter so I do worry that she will have to take care of me in the future. It’s something that is always at the back of my mind, but I try not to let it consume me. I enjoy living life to the fullest by travelling, spending time with my loved ones, and meeting amazing people from around the world. I won’t let my MS stop me from being me.   

My mom used to be a nurse that occasionally worked with people living with MS. She would sometimes show them my travel photos and explain to them that I also live with the disease. They would be overfilled with joy to see someone like them exploring the world. Knowing that has encouraged me to continue experiencing all the world has to offer.  

I’ve always treated MS as a piece of luggage that I wish I didn’t have to carry but must come along for the ride. Although MS has brought a lot of uncertainty into my life, it has taught me to not take life for granted and to enjoy every moment. I’m looking forward to many more travel adventures in the future!