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These Are the Things I Have to Think About As Someone With MS

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Multiple times this week I was reminded of, and spoke out loud the things I have to think about almost daily, at least weekly. The things that come along with having a chronic illness and the things that follow me due to the anxiety and silent depression I continue to carry.

The first time I was reminded of this was during my completion of the therapy I thought I needed (turns out I am more insightful than I realized and was told I no longer need to attend sessions). This educated and incredibly talented therapist asked me to describe what my day-to-day experience is with multiple sclerosis (MS). When asked that, these are the things I thought about:

I often start with the physical effects on my already compromised body. Each morning I must remind myself to listen to my disease-riddled, immunocompromised, beautiful body. Each day I don’t know how I will feel and each day I work to lift my hundred pound legs one at a time in order to carry my tightened torso in a forward motion. I am lucky if my head and neck are able to keep up with what the rest of me is doing. More often than not I am successful in completing whatever task list I have created for myself, and more often than not I collapse into bed thankful to have managed a day without a relapse.

The following thought is usually, “hmm, I wonder how last night’s insomnia will effect me today.” This lack of sleep wreaks havoc on my brittle nerves; making my fatigue inflate so I feel as if each step I take is similar to moving through molasses. Next comes the pain induced by my nerves misfiring; luckily the self-care baths I have learned to look forward to are a source of consolation.

However, the response I had to this wonderful therapist was, “I am often in pain and so tired I can barely move, plus I typically want to throw up.” She asked why I don’t share the things I think about with others as frequently, as I actually think and feel it. The answer to that is because I don’t want those to be the things other people think about.

The next time I was reminded of these things I often think about was when I was having a conversation with friends over delicious vegan food and wedding planning for a lovely bride to be. Whatever the topic of conversation was is not important, but I remember saying things I have never, or rarely, said out loud, but often think about. These things I said were explained more simply, but it was shared that I have fears for the future: fears of having children and not being able to support them in the way they will surely deserve, fears of being alone and unsupported, and fears of what my body will do to me, or what my body will be unable to do for me. All of these things are thoughts I have to think about because MS is very real, and very scary.

And as I worked to fall asleep later that night I replayed these fears in my mind, feeling contented in having said them out loud to someone. Somehow, the few thoughts I managed to speak seemed to lessen the fears, for that time and for the rest of that evening.

So to my friend who wondered how it impacted me in talking about it, I thank you for you concerns, but also thank you for holding space for me to release that, allowing us to learn from it.

As I am writing this, and thinking these thoughts, I am practicing self some self-care. I have found this is a necessary routine I must actively work towards to help quiet these scary MS thoughts. Self-care to me is drinking coffee under cozy blankets, watching cooking shows, taking a bubble bath with Epsom salts and essential oils, being outside and drinking wine with dinner. Self-care to me is saying no when I really want to spend time with friends or family, and it is ordering groceries on Instacart in order to ensure never leaving the couch. Self-care is permission to feel, physically and emotionally. These are also the thoughts I have to have in order to remain positive and motivated. Self-care is conversations with friends that turn into inspiration and it is leaning on those you love and who love you in return, even when you don’t want them to have to think about those things.

A banner promoting The Mighty's new Self-Care Lounge group on The Mighty mobile app. The banner reads, Taking care of yourself is important, but that doesn't mean it's easy. Join the Self-Care Lounge group so you can prioritize you. Click to join.

Today, I felt inspired to remember my desire to share my words. I am sharing these things I think about, not for sympathy, but to serve as a reminder for any person who needs a nudge.

I heard a series of words today that are so simple, but ring so true to the things I have to think about. Those words were “you can do anything right now, everything is immediate.” So, to honor the immediacy of those words, and of my words I choose to share this, to face fears now and to let you in to the things I have to think about.

Getty image by Marina Borodacheva

Originally published: October 23, 2020
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