" Not having control over basic functions of my body was an absolute mind f*ck" - Sam’s Story and the Lessons of a Life with MS

Hey there! I’m Sam, and I have had MS for over 19 years, which also happens to be half my life. 

When I was diagnosed with MS my sophomore year at OSU, I thought my life was over especially in my case because MS came on in a very I AM HEREEEE in ALL CAPS type of way. I went from being a college student concerned about school and hanging out with friends, to struggling to walk, write or see properly. Not having control over basic functions of my body was an absolute mind f*ck - in every sense of the word. 

I didn’t know it at the time but over the next 19 years, I would go through countless ups and downs with MS - relapses, pseudorelapses, daily symptoms, medicine changes, lifestyle modifications, mental and physical shifts, spirals, changes in social support, navigating the maze that is US healthcare and the list goes on.

As soon as I would feel like I was finally getting ahead, an unplanned setback would catapult me backward and I would find myself yet again trying to claw my way back to the way I was. Often it felt like the changes (and challenges!) were endless.

There were also major wins in those 19 years. I obtained bachelors and masters degrees, moved states, got married, worked in offices, fell in love with fitness by running boutique fitness studios, spent hours farming and gardening, and put in a lot of time to be in the best physical and mental shape of my life and ultimately created a life that I didn’t think was possible in that doctor’s office when I struggled to see, use my arm, walk and care for myself.

Of course it would be amazing if things could be consistently great, but that’s not how life is. For better or worse, chronic illness or not, life is full of twists and turns, wins and lessons. In my case, one thing that has remained constant throughout my entire journey are the highs and lows. When you zoom out and think about big picture, life with chronic illness is like a magnified version of life itself. Similar to life, the ups and downs occur, but they are in greater intensity and higher frequency when your health is in flux. 

I don’t think you can ever prepare yourself for what this looks and feels like until you actually live it. But, when I started my journey with MS against my will, I remember wishing that I knew that the ups and downs are inevitable (and possibly more often than what is ideal). And, I wish I knew what wins and lessons looked like in the first place, because often they smaller things than I thought.

In my opinion, some of the wins are things you didn’t think you would ever classify as a win… Relearning to write? Wish I never had to do it, and I am SO proud of myself for showing up day after day and doing it.

Being able to cook myself a meal? It makes me sad that this is a highlight and damn, there is no greater feeling than looking at a plate of food I made for myself especially when I didn’t think I could.

And of course there are losses too. There are things you cant prepare yourself for and also things that you cant even fathom happening until you are grieving the unwelcome change. It’s just part of it. 

Some challenges are obvious with big notable shifts of before and after  - changing medicine, relapses, finding a doctor, navigating health insurance. 

But there are also the smaller moments in day to day life - refilling your pill box weekly, prepping for doctor appointments, the constant juggling of energy reserves and strategic scheduling, having to repeatedly answer how you are doing without going down a rabbit hole of how you are ACTUALLY doing. 

Both the daily occurrences and more impactful moments affected me. And as the years go on? 

It gets old tbh. It’s the rollercoaster ride I didn’t buy a ticket for. It’s the bestie that I don’t want. It feels relentless, without an end in sight at times. For the record, I get that it is not all bad and it would be a disservice not to discuss those times, because they are so tremendous and impactful in my journey. Remembering them is remembering how strong I am too, ya know?

And, there is no shame in acknowledging that doing a hard thing like living with a chronic illness is, indeed…hard. It is also a never ending process, not a destination you get to where everything is perfect.

Rough days will always be a thing. Currently, I am at the point where I have some tried and true tools to recognize when I am spiraling and need to bring in some reinforcements, or resources let’s say, to help me. The first step in this was recognizing when conditions were ripe for a spiral. 

To do this, I had to observe from a bird’s eye view how I felt in my body and mind before and after a spiral happened. Are my thoughts racing? Are they inherently critical or judgmental? How does my body feel? Tense? Heavy? Hot? How is my breath? 

Knowledge is power after all. 

For me, I know conditions for a spiral are brewing when it feels like there is no hope in sight. I notice my perspective shift - negative thoughts and beliefs overpower any neutral or positive thoughts I have. 

My thoughts are some flavor of this - I gotta deal with this, damn it. I hate having to take breaks all the time. Now I gotta do the pharmacy, then the portal messages, why won’t this ever stop?  Why can’t it just be easy? Why can’t I just get up and go? Why does everything take so long? I am so slow. Literally everything is a production - even basic needs. UGHHHHH having an illness is so exhausting….

It looms over me like a dark cloud and with it my mood shifts. I find myself noticing negative, critical, judgmental thoughts exponentially more than a light happy thought. My body tenses up, my jaw clenches. My heart might speed up. My breath becomes more shallow. Then I usually feel an a lot of tension, weight and heaviness in my body. 

And again, there is no shame here. No, it is not ideal for me to be experiencing it, but shaming myself for that is just adding salt onto the wound and I REALLY don’t need that. 

But, then in typical chronic illness fashion, all hell broke loose the last 6 months in my life. Sh*t hit the fan, like REALLY hit the fan, in more ways than one and I could feel myself slipping into more of a dark place mentally. My spirals were happening WAY more often than I would prefer and my quality of life went down the toilet. After a particularly rough breakdown I reached the point where I knew it was time to make changes.

Since I have experience in knowing what is going to help my quality of life vs. hurt it, I was able to recognize these patterns and start making changes to improve my mental health. The key word in that sentence is ‘recognize’ because THAT is what I do. I recognize it without shaming, judging or critiquing my experience. I just observe, accept that is my current reality, and then shift things accordingly. 

What this looks like in the big picture is: 

1. More acceptance 

Instead of living in the past or future, I focus on the here and now. Sure, maybe I can’t relieve stress by going at max speed during an intense workout like I used to, but I can move my body in ways that work for me. And I can put on my favorite music, have fun with it, and really pay attention to the mind-muscle connection and how good it feels to just move in any capacity. 

2. More compassion  

I can choose to nurture myself instead of tear myself down. I like to think of it like I am my own cheerleader, and I speak to myself like how I speak to a friend when they are going through a rough time or trying something new. In practice that looks like saying ‘I can do this’ to myself. It also looks like really pausing, reflecting and soaking in the positive moments when they do happen. Like, ‘oh, I was really nervous about having enough energy to take that shower and I did it, yay!’. 

3. Listening to my body and mind 

This one is two fold - because it is about paying attention to your body AND your mind. I have found that often my thoughts are more likely to veer negative or critical if my body is feeling exhausted or overstimulated. Knowing that my body can influence my mind is helpful, because then if I notice thoughts getting particularly prickly and negative, I can pause and check in on how I feel. Am I tired? Hungry? Do I need to stand up? Stretch? Take a break? Cool down? It’s not about being hyper fixated on knowing what you need ALL the time, especially because sometimes our bodies and minds do their own thing (as frustrating as that is). It’s about being able to tune into your body and your mind and learn how to tend to it in a kind, compassionate way. No need to go on a hunting expedition to figure out every peice of your body and mind, even just a 5% increase in listening to your body and mind can make a big difference! 

4. Reducing stress 

Stress is inevitable, especially with an illness in tow. That is all the more reason I personally choose to prioritize minimizing stress. The way I do so is NOT by avoiding anything that causes stress, it is accepting that stress is part of life. I also like to choose to carve out space for things that aren’t as stressful, like play, pleasure and finding glimmers. Because the stress and hard days will exist. Really, experiencing those harder times are the only reason we are able to identify the times when things are good. You can’t have the dark without the light after all. Adding in play, pleasure and looking for glimmers helps balance out the stress by helping me get to a more rest and digest place vs a fight or flight place. It helps remind me that life is nuanced, not black and white. It shifts my perspective from seeing only the negative to seeing other things that are neutral or even positive. Adding in play, pleasure and glimmers is like anything - it takes time to make it a habit, and it won’t become a habit if you don’t try it. In order to add in more play - do things that are within your capacity that are playful - no rules, no right way to do it, just play. I got a coloring book for this - it allows me to have a world to escape to that I get to design as I go while being creative. Adding in pleasure is about things that feel good in all different ways - you could feel the warmth of the sun, have yummy food, learn something new, look at art, create something or move without rules, bond over a shared interest with someone or play games. And glimmers are about finding little sources of neutral or positive vibes to tap into throughout your day. Sometimes it is my cat sleeping sweetly by my side, other times it is looking at a picture on the wall and remembering what I like about it. 

Now all that is great, ANDDD remember how I said I am stubborn and all that? 

Well, I can still get stuck in my head a lot during the day. In order to not get carried away by my thoughts or with the stresses that inherently exist when living with an illness, I need ways to redirect myself. I can’t always access the ability to reframe a thought or to be accepting, compassionate or kind to myself because my body already feels anxious and overstimulated. So, sometimes calming down to get to a point where I can think logically needs to happen first. 

This is when I tap into my senses.

Sight, sound, smell, taste and touch are all very powerful ways to influence how we feel. Personally, I find that it allows me to reconnect to myself especially in times of overwhelm. 

Below are examples of how I connect to each sense in case you are curious…

SIGHT

I look for stuff in the space I am in that I know I like already - it sounds silly but one of my favorite colors is blue, so I slowly look for blue things around me while focusing on my breath to slow down my mind. And since I am purposely looking for things and gravitating towards things I enjoy (in this case something blue), my body will naturally soften and sometimes good memories will come into my brain. Also using dim lights and minimizing bright lights with glasses has really helped take the edge off, just in general. 

SOUND

I love a good ear plug :) The kind I have just soften the sharp edges of sound which helps my body relax, especially when in loud environments. I also really like brown noise when I am trying to focus. It is like white noise but emphasizes lower frequencies. I find that it really puts me in more of a flow state and it is a nice way to slow my body and mind down. 

SMELL

A candle, a flower, an aromatherapy inhaler can all shift me from an escalated towards a regulated state. I found little inhalers online that have different themes - dream to chill out, blaze for a boost of energy, happy for cheerful and bright vibes. To my surprise they really pack a punch in the best way possible.

TOUCH 

We are physical beings and touch is something you can do to bring in feelings of safety and peace. I do a few different kinds.  Pro tip: Pair these things with slow breathing for added benefit. First, I will lightly touch my arm, gliding my fingertips along my forearm on each side. I tune into how that feels, light touch is often overlooked but it can be SO calming. Second, I will apply light pressure, especially if I feel extra anxious. Cupping my hand on the front of my head (by my forehead) and on the back of my head and applying light pressure helps me contain my body. Another light pressure option I do is just putting my hands on the tops of my thighs and lightly pressing into them for 3 seconds, then release and repeat a few times. Lastly, I will sometimes give myself a big hug. After all, life is hard and sometimes we all need a little hug!

TASTE 

Nourishing food can be balm to the soul, which is why I like to make a moment out of tasting something. So say I get a little chocolate treat, I eat it consciously and feel the chocolate melting in my mouth and I feel how happy it is making my heart. 

These are just big and little things I have found to be particularly helpful over the last 19 years and I wanted to share. As I said above, living with illness is relentless. In my opinion, it causes thousands of paper cuts over time. I’ve learned that the way to heal from all those little and big cuts is through acceptance and compassion mixed in with thousands of glimmers, moments of joy, pleasure and happiness. Because both things can be true - life can dish ya out endless challenges, and we can find moments of joy in between tears and anger. 

If you want to hear more from me, swing over to www.samanthasalvaggio.com to find my blog and more.

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Clinical definitions will never capture the full weight of living with these conditions.

But we can.

Chronically Me.