How Do I Know What is From MS?

You may know MS is called the Snowflake disease because, similar to snowflakes, no two people with MS are alike. That is pretty cool when you think about it; we are basically little unicorns. 🦄

However, the other side to that is that it can be hard deciphering what symptom is from MS and what isn’t. Plus a lot of symptoms from MS could be from other things, too.

Is it MS ... or something else?

Dizzy? Is it MS, or did I stand up too fast? Am I hydrated?

Having trouble regulating temperature? Is it MS or the changing seasons? Or is the heat from the summer exacerbating past issues?

More spasticity? Is it MS? Is it the heat? Am I hydrated? Was the gardening session I did too intense?

More weakness? Did I overdo my workout? Am I too hot? Did I drink too much caffeine?

You see? Some symptoms could be caused by one factor, or a combination of factors, not solely MS.

Trying to track my symptoms

Back in 2005, when I was diagnosed with MS, I remember being overwhelmed with trying to differentiate what I was feeling physically and what factors were contributing to it.

I think the first step to understanding something is to observe it and reflect on it without judgement or comparison. Knowledge is power after all, but knowledge with critical commentary isn’t so helpful.

Once the initial feeling of overwhelm from diagnosis receded, I started to build my knowledge.

I paid attention to how my body (and mind) responded to different variables. What happened when I had 6 hours of sleep? 8 hours? 9 hours of very interrupted sleep?

What happened when I was hydrated? Hot? Cold? When I ate a nutrient rich diet? When I incorporated more movement in my day even if it is the last thing I wanted to do? What about when I over did it: how did it feel then?

Noticing trends

I did this for a long time, as in off and on for years. It took a while for me to notice consistent trends and patterns; some were easier to spot than others.

Every time I noticed a big-picture theme like "when I am not hydrated, I am more tired and heavy-feeling," I felt more in control of my own health (and more knowledgeable of it)! Yay!

Now I am not saying that this is the be-all-end-all, but it helped me realize two things:

• How my specific and unique MS symptoms responded to certain variables (like sleep, hydration, etc.) that were within my control
• What bodily sensations and feelings may NOT be attributed to MS or these variables like sleep, etc.

This has helped me greatly in appointments with my MS specialist, too, because I can report information about my MS symptoms and how they fluctuate. And I know when to ask for a referral to address something that may not be caused by MS.

The process of learning

I think one thing to be mindful of when observing how you feel physically and mentally is to observe, not judge, not shame, not speak badly or critically to or anything else like that. Speaking from a vast amount of experience, shaming yourself isn’t going to get you anywhere. I think what can get us somewhere is being kind. It can soften the prickly emotions.

Whenever I would get frustrated, I would tell myself: "look, this is a process and you are doing it! Be proud of that. It’s okay to be frustrated. Know it will pass."

Then, I would ask myself what I needed in order to balance my feelings of frustration. It may just be a fun distraction, or it may be writing out why I am angry in the notes app on my phone.

Once I felt those challenging emotions subside, I would pick back up with tracking. It was important to me to hold myself accountable, while also being realistic and not holding myself to the standard of perfection or comparing myself to others. By doing this and revamping my self talk to have more kindness and less judgement, the sometimes painful process of learning was softened. I actually enjoyed learning about my body and mind, and I was motivated to do it.

Building confidence and trust in myself

The knowledge brought confidence and trust in myself. I knew what I needed before time in the heat (or insert other scenario here). Everything was less of a guessing game and, most importantly, less of an unknown. The bit of freedom that comes with that is something I will take any day of the week.

I still pay attention and track my symptoms and how I feel, albeit in a looser format now. That said, when there are big changes, like a relapse, pseudo flare or the like, I ramp up the tracking and actually log it so I remember it. It helps me find my footing, calm my overwhelm, and understand what my body and mind are going through. It metaphorically puts my feet back on the ground after being swept away by MS.

What about you? Have you been paying attention to how different factors affect how you feel? What have you noticed?