Navigating the Fire Swamp

Today is World MS Day and in honor of that I am going to give a quick update on my own journey with this disease. It has been 6 months since I was diagnosed and I’ve learned a lot. I still have ongoing symptoms – numbness in both feet and my left leg, weakness in my left leg and spasms in my left side. I can’t walk very fast and tire quickly but I’m learning how to navigate this new reality every day.

I often told my kids to use the wisdom I learned from the Princess Bride when facing new challenges. When Wesley and Buttercup were making their way through the Fire Swamp escaping Prince Humperdink, they discovered how to successfully navigate each obstacle. One at at time, they figure out how to get past the first two challenges, the Fire Spurt and the Lightning Sand. At this point, Buttercup despairs that they will never make it. Wesley reminds her that they have been successful with these two obstacles and then states, “ROUS’s (Rodents of Unusual Size) I don’t believe in them!”

As I navigate through the Fire Swamp of MS, I am facing each challenge individually and learning how to navigate them. My own challenges have included:

Fatigue – I am tired all the time. Whether it’s body fatigue at the end of a day of work or brain fatigue, I am tired. There is not much available to me to deal with this but I have learned to guard my sleep time. I’m in bed early and I do what I can to make sure I can sleep. I now limit myself to one cup of coffee in the morning and no caffeine after noon. I am working on keeping everything simple – simple meals, simplifying household chores, downsizing my stuff and letting go of things that cause drama. I’m still tired but I’m coping better with my new limits.

Weakness/Numbness – In January, I had a really hard time walking. My balance was bad, my left leg felt like it weighed 1,000 pounds and I got tired really quickly. Grocery shopping in one store for 30 minutes seemed overwhelming. When I saw my neurologist in March, he wanted me to start PT. I was little skeptical that it would help much but knew I needed to do something. His piece of wisdom was that if I was going to be tired at the end of the day, I might as well exercise and be tired. It really wasn’t any different than being tired and sitting on the couch. So I began regular PT visits in April. And they have been very beneficial for me. I feel stronger now and walk better. I have never been regular with exercising but now I’m motivated to continue because I’ve seen improvement.

Heat Intolerance – Last summer I knew that heat made me feel awful, I didn’t know it was MS related. I am anticipating this issue this summer but I’m trying to come at it more prepared. When I get overheated, my symptoms flare. My legs are weaker and my legs buzz with each step. Thankfully, our house is well air-conditioned. I can stay inside when it is really warm this summer. But I’d like to be outside some as well. I have purchased a mini fan that fits in my purse and is charged by USB. It will serve me well in a pinch when I need a quick cool down. I’m looking into cooling vests and other things that will help me stay cool.

Relapse/Exacerbation -Wesley had never seen a Rodent of Unusual Size so he suggested they didn’t exist. He didn’t want Buttercup worrying about what might be ahead. Thankfully, I haven’t had an exacerbation since I was diagnosed in November. It has been a challenge not to be paralyzed with anxiety by the thought of one. The exacerbation that led to my diagnosis has left me with continued disability. I fear another one that will take something else away from me. I am doing all that I can to not have one. I am due another dose of Ocrevus in July and the one dose I had in January seems to be doing what it is supposed to do – no flares. But I have learned that MS is not predictable. Each person is different, each experience is different, there are no patterns and there are no guarantees. It has been hard learning to live with the threat of a flare around every corner. I would like to be as flippant as Wesley and declare, “Exacerbations? I don’t think they exist!” But more often, I am Buttercup frozen on the floor of the Fire Swamp anxious about what terror might lie ahead. This is an ongoing challenge for me. I have much to learn as I continue on my journey through the MS Fire Swamp. Wesley and Buttercup made it through and even faced the dreaded ROUSes. They did it one step at a time and eventually succeeded where others had not. I keep reminding myself that I can also face each challenge one at a time and to not borrow trouble from tomorrow. Because I know in the end, I can’t control everything – like when an ROUS will attack or an exacerbation will come. I am thankful for my faith that gives me strength where I am weak and hope where I would despair.

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