Unreliable

Posted On March 1, 2023

Unreliable was about the worst thing you could be called in my family.  If you were not 15 minutes early you were considered late.  My grandfather took lateness as a personal insult and drilled promptness and reliability into all of his children. 

“Why don’t you like this person, Grampy.” 

“Well sweetie, he’s just unreliable.” His tone implied this was on par with being an ax murderer. 

The drive to be a reliable person, above all else, is a trait that’s hardwired into my DNA. So I tended to do what a lot of us do. I overextended myself. I struggled to say no to anything that was asked of me and if I committed to something I threw myself into it full force until I essentially burned out. It’s not a good gig for the nervous system, I’ll tell you that for free. And then my nervous system did something unforgivable, but perhaps understandable.  IT became unreliable. 

The symptoms have been happening since I was 18, luckily with enough space between them that the pattern wasn’t discernible or confirmable until recently. Maybe because of my age, or maybe because I finally stopped pushing and gave myself space to listen, my nervous system finally got heard last year. On June 1st 2022, after months of testing, I was diagnosed with Multiple Sclerosis.

It was a weird double edged sword. On the one hand, I had an actual diagnosis that was treatable even if it wasn’t curable. On the other hand the symptoms of said diagnosis had been going on since my freshman year of college. On the one hand, I was still fully mobile, on the other hand….it had gone untreated for so long and there was no way to know where it was going to go from here. 

It shook me.  And the main reason is that, as I researched the disease, one word kept coming up: unreliable. 

MS is basically a condition of the immune system being unreliable. It could do what it’s supposed to do, or it could choose to attack the myelin sheath in your brain or spinal cord. This makes communication between your brain and body unreliable. MS makes planning difficult because your health is unreliable. You could feel well enough to hike a mountain one day and find yourself bedridden the next. 

Despite the fact that I have so far maintained full mobility with this disease, I found it all emotionally paralyzing. I felt like I could not commit to anything. I backed away from my summer job as a tour guide because evenings are worse for me when I’m having a flare and I might suddenly not have the stability to do my tour. I found the idea of job searching, something that had been on my docket for last fall, completely overwhelming. There were too many questions. What level of flexibility would a job have to have in order for me to be a reliable employee? What am I still capable of?  Prior to my son’s birth I worked 12 hour days. Can I still manage that? Should I? Likely not. Mostly I was terrified that this new diagnosis meant that I automatically became something even worse than Unreliable. A Burden.

It was a long dark summer, compounded by 80% of our family plans getting canceled due to covid. There was too much time to sit with all the thoughts and questions that come with a diagnosis like this. Luckily, I am, as one of my best friends likes to describe me, “Stubborn as F@#$.”  I reached out to my herbal teacher and got recommendations for plant support to go along with the allopathic medicine I would be starting. I researched and tested diet changes. I stayed active. Another amazing friend hooked me up with some free physical therapy. I kept doing yoga, and started making plans to hike again. 

When I finally got to see an MS specialist at the end of the summer, I discovered that I’m one of the lucky ones for many reasons. 

#1: I have a low lesion burden even after over 20 years of sharing my body with this disease. 

#2: I “magically” (my MS doc’s word, not mine) do not have the level of disability normally associated with my lesions. This is a gift we do not have an explanation for and I am endlessly grateful to my body for handling things so well. 

#3. My MS responds really well to diet, exercise, and super hydration (This may be at least some of the magic that has kept me able bodied).

#4. My disability level is at 1 and that is only due to the fatigue I experience from my body forcing signals through damaged nerves all day everyday.

#5. I qualify for a new medication that stands a pretty good chance of stopping this in its tracks, that I only have to take once a month, and that may allow me to go about the rest of my life “pretending I don’t have MS.”

There are still a lot of unknowns about the disease in general, how it will or will not progress in me, and how I will decide to work with and around it. So far I am responding well to medication and have more energy than I’ve enjoyed in years.

As for the reliability issue, I’m learning to do something that I’ve never done before. I’m learning to be reliable to myself. I commit to the things that make my body a more functional and comfortable place to live. I prioritize healthy food, exercise, and rest. I cut myself some slack on days I can’t do all the things. I’m learning to show up for friends and family in different ways. I take advantage of the good days, without burning myself out. And I am grateful for every moment.