Being of the scientific persuasion, I've been quick to judge "alternative" treatments and stuck to well-tested, peer-reviewed ones — the more clinical, the better. So mindfulness has always felt like a bit of a stretch for me.
Deciding to start mindfulness with MS
Deciding to give it an honest try didn't happen overnight and was preceded by countless eye rolls from yours truly. But the practice started to show up everywhere I turned, so I decided to try it. Grounding the mind in the here and now can feel impossible with symptoms screaming for attention, uncertain futures, and days to plan. As we know, MS can sometimes call for our immediate and singular attention.
A practice for stress management
After a few meditation sessions, I realized why it's called mindfulness practice. Not engaging with the thinking mind is hard work. Mindfulness is not about not thinking. Instead, you learn how to let the mind do its own thing and return to the present moment when it starts to take over.
Prolonged stress is, without fail, a catalyst for my MS to flare up, so I decided to stick with the practice to see if it was worth it to me. I'm quick to ruminate and want to learn how to notice when the mind starts to wander. But I had no idea how much harder my MS would make this process. I ridiculed the first few practices with a bit of snark. The thinking would sound a bit like this:
"Yep, right foot still tingles. I would have never guessed..."
"8th year, baby! Must be a record."
"How many days in a row do you have to note the same thing before it becomes a waste of time?"
"I didn't need to sit here in silence to notice that. I woke up noticing it, thank you very much."
Managing thoughts about MS
Perhaps the biggest hurdle to overcome in my practice is not letting thoughts and feelings about my symptoms take over. Since diagnosis, I've tried hard not to think about my symptoms too much, so to sit down to focus on the body (the body scan practice) was uncomfortable. The body scan exercise is a slow practice. Initially, however, my scans looked more like a sped-up mental version of "head-shoulders-knees. and toes." I couldn't wait to finish the exercise and tried to speed through it, rendering the entire process completely useless.
The practice focuses on noting which sensations are present, acknowledging them, and moving on without the need for thought or judgment. Allowing my attention to linger on feelings of frustration and impatience had become somewhat of a standard for me over the years, and it can steal a lot of time and energy.
Resetting the mind
The most beneficial mindfulness practices for me in dealing with my MS are the body scans and mind resets. Getting a daily read of my body without judging what I'm finding is difficult, but it allows me to pay attention to what it needs. Mind resets (or reboots) can help on days when cog fog is exceptionally intense. There are rarely immediate and dramatic effects; as with everything else, it's a matter of doing it regularly and consistently. I have yet to explore the extent to what the practice can offer, but these initial findings exceed all previous (and meager) expectations. More importantly, it's giving me tools to deal with my MS in new ways.
Realistic expectations of mindfulness
Mindfulness and meditation won't be a deal-breaker in how I deal with this disease. After eight years with my symptoms, they don't get the same attention they initially got. I don't have to pay closer attention to them to know what is happening or what I need to do. But my expectations of what mindfulness was and what it could do for my MS were, at first, unrealistic.
After a couple of months, I realized it had more to do with acceptance than attention. MS can (and sometimes will) demand our unwavering attention and sidetrack our minds to become all-encompassing. No mindfulness training in the world will remove that altogether, but thoughts and the subsequent effect on behavior can be as fleeting as they were initially meant to be. It's not a miracle cure or a quick fix for anything, but it can be a valuable tool.
How I view mindfulness
There's a spectrum of what mindfulness can be. Some of it is spiritual, some visual, some tied to religion, some to affirmation, and so (SO) much more. To me, it's a structured practice and a skill that makes my life with MS a little bit easier. It's not going to be a replacement for anything in my existing arsenal of routines to handle this disease, but instead, a strong, anchoring place to start before moving forward. It's not a spiritual practice for me: it's a tool, the same as stretching and a healthy diet can be in dealing with MS. It helps me reduce stress, which, in turn, can help with symptom management.
If you want to give it a try, here are my big takeaways:
1. Don't expect miracles. In fact, try not to have any expectations at all.
2. Find the practice that works for you. One size does not fit all.
3. Give it time, and do it regularly.
I can highly recommend the app/website Insight Timer. It's free (with paid options) with a massive library of courses, themes, and guides.
Have you experienced any of these vision symptoms? (select all that apply)