Some of you may already know this, I know that I have personally spoken to several people and encouraged them to start the practice of logging their symptoms. I started my symptom log as a way to keep track of what I was feeling and when regarding new and persisting symptoms. It was a way that I could keep track of changes, know how long certain symptoms were lasting and I could also take it with me to my doctor appointments to help me advocate for myself and not worry that I might forget to mention something important.
Over time, my symptom log turned into a journal of sorts. It was a place where I could vent and be afraid without worrying about how that might burden someone. Instead of just writing that my chin and bottom lip were numb and it was causing me to slur my speech, my brain felt like it was under water, or my leg was too weak to go for a walk that day, I started writing how those things made me feel. I realized that for whatever reason, simply writing what was happening didn’t feel like enough. I didn’t think I was doing my experience justice and it was causing me to feel even more anxious and frustrated. Seeing my symptoms diminished to a couple words on a piece of paper felt like I was minimizing the intensity of what was happening. I wanted to remember my mental state, how my emotions were impacted and my outlook during those experiences so that I might be able to revisit them and remind myself that hopefully those things, too, would pass like most negative feelings do eventually.
The first time I was feeling better and went back to read some of my old symptoms and the emotional diary entries that I’d written with them, I felt compelled to address those feelings. I instinctively felt the need to answer the rhetorical questions I’d written months before to no one in particular. I saw the words on the page and remembered how afraid and alone I felt while writing them, knowing at the time that the only reason I’d written them there was because I knew no one would have an actual answer for me elsewhere. Why me? When will this end? Will this ever go away? I wanted to give that girl the friend and motivator that she needed when she was literally facing some of her worst fears with this disease and had nowhere to turn but inward.
This started my process of keeping a running journal of my worst and best days. I do my best to confide in my journal when I am feeling lost or alone in my symptoms. Then, when things are feeling better, or I have accomplished something difficult and I feel triumphant, I go back and I write little notes in the columns to myself so that the next time I am in a place where the light at the end of the tunnel feels so far away, I have those words to comfort me. I answer those questions for myself.
Example:
“Question: When will this end? I feel like I’ll never be able to run again… I can’t stop thinking about worst case scenarios. What if this is “the one” that takes it all?
Answer: When you asked this, you had no idea you were just a couple weeks away from feeling okay again. I know it can feel like symptoms will last forever and it absolutely SUCKS to have no idea when you will start to feel like you have your life back. No one knows for sure what will happen next time, but in just two short weeks, you were able to run a 5K again. You’ll get there. Be patient and kind to yourself. Still show up. Still get dressed. I know it feels so unfair, but today has been a great day and there’s so many more to come. Look at your life before MS and look at it now. You are so much better off. You will feel better again and this weight will lift. Do something for your mental health anytime you feel like you’re stuck and can’t move. Expand your mind and take a deep breath. You’ve never not been okay eventually. You always tell yourself that MS is the reason you’ve gotten to where you are and you wouldn’t trade it. This is the harder part of that journey, but it is worth it as long as you make it so! I love you, keep going.”
Those little notes that I have written to myself have become invaluable to my MS experience. I have my own words to remind me that those symptoms did eventually fade and that I did go on to do things that made me so proud of myself. I always make sure to mention that it’s okay to feel like something is going to last forever, as long as I can remind myself at some point that in the past, it didn’t last forever. Things were eventually okay and I learned to either cope with, or move on from my symptoms in the best way possible. I found that because I was hearing those words from someone I knew with 100% certainty understood what I was feeling on every level, I took them to heart so much more.
Reading those responses to myself on bad days ended up making a world of difference. I didn’t feel like I had to be polite to a friend and tell them that I’m sure they’re right when they said it would be okay but I was secretly thinking… “How they fuck would you know?” I didn’t have to save face; I didn’t have to be grateful someone was listening to my “sob story.” Of course I appreciate that people want to try to understand and be supportive, but on bad days where I feel so far removed from the world where my non MS friends and family get to live, I can honestly feel resentment creep in when they try to pacify or encourage me. This was my way of being able to be that person for myself. Good day Suni got to be there for bad day, week, or month Suni and there was simply no judgement or patronization on either end.
Doing this has been a way to continue the journey I have been on of searching for creative ways to be an amazing friend and support to myself. I love that I can go back and see the progress I have made, both in learning how to express myself in a healthier way when I am experiencing negative thoughts, and also learning how to speak kindly to myself and have compassion for whichever version of me picked up the journal to write in it. Because MS is so unique and personal for every single person living with it, it is important that we make friends with ourselves, to care for the most tender and vulnerable parts of who we are and then supplement all of that self-love with other friendships and love from our families. We don’t ever have to do any of this alone, but having a good relationship with yourself is one of the most important areas of strength we might often overlook.
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