This is something I have to remind myself a lot more lately. Brain fog has hit me hard the past month or so. I’m back in a teaching position for the first time since summer 2020. While I am loving it, it has been a lot harder than I could have imagined. I know managing my stress is critical to my disease management, but I didn’t realize that even if I don’t feel stressed or overwhelmed in the typical sense, my brain is still struggling with the additional work load.
I had my first IEP meeting last week. And while my co workers praised my efforts and said I did a wonderful job, I got home and cried. I have always been a talker. And I would like to think that I have always had a way with words. I have run many IEP meeting seamlessly and eloquently. This time was different. Now… my brain fumbles over simple words. I find myself struggling to get a word off of the tip of my tongue. I take long pauses in sentences because I forget what I was saying. It a hard adjustment. I have to remind myself, I’m not stupid, just sick. I know the words are still there and my actual intelligence hasn’t changed… but I feel so dumb. Multiple times throughout my day I find myself apologizing for similar fumbles. I try to laugh them off or come up with an excuse, like it’s been a long day or I’m tired. It’s hard when people point it out or can’t understand what I’m saying. But I know it’s the MS. But I also know that it’s not obvious to anyone else. Which is a double edged sword. I can get along without anyone knowing there is anything actually ‘wrong’ with me, but then each time I meet someone new I wonder if they think I’m stupid, or boring, or lazy. I know these symptoms are temporary and are really just signs that my body is overwhelmed. I know that I am taking steps to heal my body and help it function as much as possible, but for the time being, it all just sucks.
I think the most difficult part of my MS journey continues to be the fact that it is invisible. I constantly share memes or graphics on Instagram, in hopes that that people who know me will see them and think “oh yeah, Devin is struggling with this”. In my efforts to stop being such a complainer, I’m left with feeling pretty isolated. If I don’t complain, no one can see the pain and discomfort I’m going through. If I do complain… well then I’m even less fun to be around. MS has also taken away my fun side. I have to plan out everything; from dinner to birthday parties to going to the gym . Make sure I have enough time to rest before and after it. When I socialize, I can’t drink alcohol anymore. One or two drinks while winding down with friends can turn into a difficult morning after due to disrupted sleep, unbalanced nutrition and so on . Never mind actually letting loose and drinking whatever I want. If I do, the next few days will be debilitating. I have a friend getting married in a year and a half. I am already wondering what I will have to do in order to enjoy it- what IV vitamins and hydration I could use, how many days before or after any wedding events should I take so my body is prepared. There’s a little hope that this season of my life will be over by then, that I will be living in a whole new body because of all the work I’m putting in, but it’s hard to have hope. For now I prepare for the worst.
It is hard to remain optimistic when I feel like MS has ruined my life. It has changed me in ways that make me feel like I have lost the best parts of me. I feel guilty for feeling this way, because others have it so much worse, and I could have it so much worse. But for right now, I’m angry. Im frustrated. And Im defeated. I am sick and tired of planning. I don’t want to think about every piece of food or drink I put into my body, “will this trigger symptoms, is is too much sugar, am I ruining the progress I am making?”. It is all so exhausting.
All the aside, I never like to finish a blog post on a negative note, so i’ll highlight some of the positives. I have had such great support from so many people. But specifically, these two. I have been in the gym getting stronger with Jenna, who runs Fit to Function, an adaptive CrossFit program where function meets fitness for individuals with cognitive challenges, using exercise to strengthen brain-body communication. I’m also working with Meredith, who runs Tactic Nutrition, a nutrition and lifestyle coaching program. She helps me in all areas of self care- helping me balance my nutrition, create healthy daily routines, and overall, just gives me good advice. I am very lucky to have these two women as resources to help me stay on track. It makes the difficulty of having to make all these decisions a whole lot easier.