The Things I Have Realized About My MS Triggers

I have not posted, or written in a long while. I have been navigating a few chaotic life things of my choosing and settling into a new (old) job. What all of this has brought up for me are reminders of how well I know my triggers; but also how frustrated I get at those triggers and how I try to rationalize and justify them away.

For example, Friday night I felt sick … really sick, and I haven’t in awhile. I spent some time trying to pick apart my last few days in an attempt to identify what it was I did or ate to bring on these symptoms, telling myself I’d be sure to avoid whatever it was in the future. When Michael realized what my little, chaotic brain was doing he took a minute to stop what he was doing and tell me, kindly, that I have multiple sclerosis (MS), I have a disease and I often don’t feel well with no rhyme or reason. This was more helpful than I think he realized it would be. So, while I am aware of things that cause me to feel unwell, or exacerbate any of my symptoms, I also have to remember that some of the time I also won’t know, and won’t be able to investigate away what is actually occurring in my own body.

2020 has been a lesson for me in not always needing answers, despite looking for years for solutions and quick fixes. This has been a year of letting go of some of the obsessive ways in which I have tried to reign in this disease and work to eliminate as much discomfort as possible. As my nervous system wreaks havoc on literally every other system in my body, I have learned some of the things I can control to help navigate these awful sensations and poor symptoms.

There’s the standard extreme heat and extreme cold that cause my sensations go to haywire. Hot leaves me feeling sluggish, extra fatigued and often very nauseas, whereas cold leaves me aching and stiff. There’s overstimulation of my sense, which is a hard one to wrap my head around. If lights are too bright, sounds are too loud or I’m feeling claustrophobic my nerves flip into vibrate mode. This feels like my inside are quite literally vibrating rapidly. And then there’s the more visible fatigue of specific body parts. This manifests in the form of arms, hands or legs being just so tired they start to shake; this most often happens after carrying bags or completely any tasks that require dexterity of any sort.

The more internal triggers I am aware of are that of inflammatory foods, extra sugar and sometimes a little too much wine on a weekend. These things lead to my body deciding it cannot function anymore and will nosedive pretty hard (hopefully into a pillow and a few blankets).

Some of the lesser known triggers, however, are what I perceive as making me look “crazy” … thank god for Michael. These include eating too much, or too little, not going to bed super early most nights, having too many mental or emotional tasks in one day, attempting new tasks, standing in lines, standing still period, driving for a long time, being in a car period if I am having a bad day, carrying on a conversation too quickly in the morning, talking for a long time, clenching any muscles, etc. etc. etc.

Any one of (or all of) these things seem monumental to me at any given day. These things are so common and so just … second nature that most people would never think twice about how daily tasks and unavoidable situations can impact others. This fact has led me to manage these on my own, to keep quiet about them or to secretly use my tricks for feeling better without bringing attention to myself or how I’m feeling.

And I don’t share this for pity, as I’ve said before, I share this for information. I share this for insight and maybe some form of enlightenment. More for me than anyone. Often times I navigate this disease on my own, then read another blog or article and realize I am not losing my mind; I’m living the best way I can with the cards I’ve been dealt, which is great because I don’t know how to play cards.