XO Samantha Jo

Tag: MS

  • How I Still Show Up for My Life (Even on Bad Days)

    Not every day is a good day.

    But I still have a life to live—and a pretty full, abundant one at that.

    I refuse to waste time if I can help it. So this is how I show up for my life, even on the bad days.

    Lowering the Bar (On Purpose)

    I intentionally schedule at least one bare-minimum day into my week.

    Sometimes that means rearranging my gym schedule. Sometimes it means saying no to weekend plans.

    FOMO is real—and my social group is, well… extremely social.

    But I had to set a boundary with myself.

    If I want to keep showing up for my life—and for the people in it—then sometimes that means not showing up and missing out.

    That doesn’t mean I say no to everything. But I don’t jam-pack my weeks and weekends anymore.

    I remind myself that my gas tank is smaller than everyone else’s.

    And that means I have to refuel more often.

    I’ve also had to completely redefine what productivity means to me.

    A typically healthy person might be able to shower, do dishes, do laundry, work for a few hours, vacuum, and then go out to dinner.

    That’s just not my reality anymore.

    And if I do manage to do all of that?

    I’m probably going to be in bed the entire next day, completely wiped out.

    So now, productivity might look like this:

    • I got the essential laundry done—but the rest can wait
    • The trash got taken out—but vacuuming isn’t happening today

    And I’ve had to be okay with the fact that my version of productivity doesn’t look like everyone else’s.

    My Non-Negotiables

    There are days where I wake up and my energy is already gone.

    Completely spent and I haven’t even gotten out of bed yet.

    But I do have non-negotiables:

    Going to work
    Drinking water
    Eating something
    Basic hygiene

    On bad days, that might not look perfect.

    I might not eat a full meal—but I’ll drink electrolytes and get some protein in.

    I might not take an “everything shower”—but I’ll handle the basics.

    And some days, the basics are all I can do.

    My life is not Pinterest-perfect.

    This is what it actually looks like.

    Energy Strategy

    I’ve built my life around conserving energy wherever I can.

    Some of these things might seem small—but saving even ten minutes of effort or frustration can mean having energy for something that actually matters later.

    I get my eyelashes done so I don’t have to spend time and energy on mascara every morning. It’s a small thing, but it helps me feel put together with less effort.

    The peace of not having to deal with waiting for it to dry, or the frustration of it smearing everywhere while I’m already tired and running late is priceless to me.

    I do grocery pickup at a store near my gym so I can knock both things out without draining myself walking around a store.

    And sometimes? I’ll drop off laundry for wash-and-fold.

    I don’t do that all the time—but when I know I need that energy for something else, I’m not above paying for convenience.

    Simplifying my life like this allows me to spend my energy on things that actually make my life fuller and happier.

    I know not everyone has access to these options—but for me, it’s about prioritizing anything that makes life easier, not harder.

    Letting Go of Perfection

    Showing up for my life also means letting go of perfection.

    Not every workout is going to be great.
    Not every day is going to be productive.
    My house isn’t always going to be clean.
    My laundry isn’t always going to be folded.

    And that has to be okay.

    My life is not going to look like everyone else’s.

    And I have to keep reminding myself of that.

    And honestly?

    That’s okay too.

    Small Wins

    I’ve learned to celebrate the small wins.

    Showing up to the gym when I really don’t feel like it—and leaving feeling even just a little bit better.

    Getting out of bed and going to work with a smile on my face, even when it’s the last thing I feel like doing.

    Choosing myself—even when the people-pleaser in me wants to say yes to everyone else.

    Those things matter.

    Those are wins.

    And some days, I have to remind myself:

    Showing up is the win.

    This is my life.

    And not every day is Instagram-worthy.

    It might not look impressive—but it’s real.

    And it counts.

    XO,
    Samantha Jo

  • The Things I Had to Grieve After My MS Diagnosis

    Getting diagnosed with MS didn’t just change my health.
    It changed my expectations for my life.

    The shift was gradual and sudden all at the same time.

    Overnight, I had to start moving differently—medications, doctor’s visits, monitoring everything. But I didn’t immediately change who I was.

    I still had an active social life.
    I still competed in powerlifting.
    I still showed up the same way.

    At least, at first.

    The Version of Me I Thought I’d Be

    When I was first diagnosed, I had only been powerlifting for about three years—but I was obsessed. It had become a huge part of my identity.

    I pushed through workouts without consequences.
    I had what felt like unlimited energy.

    Three max-effort squats, bench, and deadlifts in a single meet? No problem.

    I was in my peak powerlifting era—and I was killing it.

    And then came the medications.

    The side effects lists.
    The appointments.
    The reality check.

    I didn’t lose that version of myself all at once.

    I lost her slowly.
    Little by little.

    She still shows up sometimes—on really good days. But even then, it comes with a cost.

    And there’s always that quiet thought in the background:

    Who would I be if MS hadn’t found me during this chapter of my life?

    In the words of Toby Keith:
    “I’m not as good as I once was, but I’m as good once as I ever was.”

    My Body Changing

    My body didn’t change overnight—but it changed in ways I couldn’t ignore.

    The first medication I was prescribed took a serious toll on my immune system. And at the time, my doctors weren’t monitoring it the way they should have been.

    When I switched neurologists, she told me my immune cell count was lower than an HIV patient’s.

    And this was during the height of COVID.

    She immediately took me off that medication. What followed was weekly lab work, waiting and hoping my immune system would recover.

    Then came infusions.

    At first, they were rough. I had allergic reactions and had to be pumped full of steroids and antihistamines—which came with their own set of side effects.

    Everything felt unfamiliar.

    I felt like I was living in someone else’s body.

    Not the one that could back squat 500 pounds.

    And somewhere in all of that, I stopped trusting my body the way I used to.

    What’s wild is that even before my diagnosis, I had symptoms. Weird things would happen—but I brushed them off. I pushed through.

    Part of that came from years of medical gaslighting. Not being believed.

    Eventually, I started gaslighting myself.

    Telling myself I was fine—until I wasn’t.

    I’m still strong. I still lift.

    But it doesn’t look the same. It doesn’t feel the same.

    And that’s something I’ve had to come to terms with.

    Spontaneity

    One of the biggest things I’ve had to grieve is my spontaneity.

    I love adventure.

    That version of me would book a random Friday night flight to Orlando for the weekend—or meet up with a friend for dinner and drinks without a second thought.

    My soul still craves that.

    But my body requires planning.

    I try to be spontaneous when I can—but even that requires preparation. I have to make sure I have the energy reserve to follow through.

    And there are some things I just don’t do anymore.

    I don’t drive long distances by myself.

    I deal with bouts of dizziness and vestibular migraines, and it’s not worth the risk. The anxiety alone—wondering if something might hit while I’m driving—is enough.

    So I’ve had to grieve the version of me who would hop in the car and drive two hours for a random weekend trip.

    That version of me doesn’t exist anymore.

    Time & Energy

    Grieving time has been one of the hardest parts.

    I get frustrated when I can’t spend my time the way I want to—especially because I have fewer “good” days than I used to.

    When I feel good, I want to live. I want to enjoy it.

    I don’t want to spend that time at doctor’s appointments or fulfilling obligations that drain me.

    Because of that, I’ve had to set hard boundaries.

    With family.
    With friends.
    With expectations.

    I can’t always do last-minute plans. I’ve had to learn how to say no—even to people I love.

    And honestly? Saying no has saved me from a lot of resentment.

    It’s easier to set clear boundaries than to silently feel like my time and energy are being taken from me.

    I already lose enough of both to fatigue and recovery.

    I’m not willing to lose more to things—or people—that don’t respect it.

    The Identity Shift

    More than anything, I’ve had to shift my identity.

    From:
    “I can push through anything.”

    To:
    “I’m strong—but I have limits.”

    And that’s not an easy shift to make.

    If you’ve ever tried to quit something like smoking or vaping, you know it’s not just about stopping the habit. It’s about changing how you see yourself.

    From “I’m a smoker” to “I’m not a smoker.”

    Until that identity shifts, the habit usually wins.

    Chronic illness forces that kind of identity shift—but without your permission.

    And it comes with grief.

    Because I didn’t just lose energy.
    I didn’t just lose spontaneity.
    I didn’t just lose endurance.

    I lost the illusion that I was invincible.

    I had what felt like an existential midlife crisis in my thirties.

    And I’m just now starting to come out on the other side of it.

    Grief doesn’t always look like sadness.

    Sometimes, it looks like adjustment.

    And learning how to move through life as someone new.

    XO,
    Samantha Jo

  • A Day in My Life with MS (Unfiltered Version)

    As a chronically ill girlie who also works a 9–5, I sometimes struggle with the most basic things. Here’s what a day in my life actually looks like.

    I’m giving you the raw, unfiltered version.

    No sugarcoating and no toxic positivity.

    Morning

    My alarm goes off at 6:15 every morning. The snooze button and I are best friends. I repeatedly hit that thing until 6:50 or sometimes 7:00, depending on how fatigued I am.

    It’s important to say that I’ve never been a morning person. My mom used to leave the house phone—yeah, I’m old enough to remember landlines—and an alarm clock by my bed before she left for work.

    The alarm would go off, and she would call me multiple times to wake me up for school. On several occasions, she had to leave work to come home and wake me up. None of us were happy when they happened.

    In retrospect, that should have been our first clue that something was wrong. I know teenagers are seen as tired and lazy, but this was a different level. I literally could not make myself wake up and get ready for the day. Mornings were the absolute worst.

    As an adult, I know I have responsibilities that depend on me getting up on time—like making it to work so I can pay my bills. So I’m more aware of it now. I set my alarm early so I can give myself time to wake up.

    Trust me, I’ve read all the personal development books. I know the benefits of waking up at 5 a.m. and getting out of bed on the first alarm. I know Mel Robbin’s famous 5-second rule. And on good days—when I’m feeling 90% or better—I can do that.

    But with chronic illness, those days just aren’t as common.

    So realistically, I’m out of bed around 6:50 or 7:00.

    From there, I go straight into my routine. I’ve simplified my mornings down to the bare minimum that still helps me feel put together and gets me out the door on time. My hair and makeup are basic.

    I have eyelash extensions because they help me feel pretty without spending energy on mascara every day. I have nailed my makeup routine down to a 10 minute process, and my hair—on a good day—takes about 15 minutes.

    Once I’m ready, I grab my gym bag (packed the night before), my purse, and my laptop bag—and I’m out the door.

    Now, all of that depends, on whether or not everything went completely smoothly that morning. I’m the type of person who seems to attract chaos no matter how much I try to push those vibes away.

    I also live in a house with two dogs, three cats, three adults, two teenagers, and a seven year old. Choas is practially my middle name. And a perfect morning routine? Yeah, definitely not going to happen most days,

    The Commute

    I live in a beautiful suburb outside a large metro, but I work downtown. On a good day, the commute is about 30 minutes if I take the highway.

    Here’s the problem: I rarely take the highway.

    Traffic is chaotic. Where I live people either drive 100 mph or 50 mph. There are multiple wrecks daily. It absolutely wreaks havoc on my anxiety and my nervous system.

    I would rather have a 45–50 minute commute than deal with the crazy drivers or be involved in a deadly accident.

    So I take the city streets.

    If I leave on time, I might stop for coffee. If not, I just hit the road, turn the music up, and go. My music choice depends entirely on my mood. Sometimes it’s music, sometimes it’s a podcast or audiobook if I’m feeling motivated—but most of the time, it’s just whatever I need that day.

    Workday

    Once I get downtown and into the building, my mornings are usually pretty smooth.

    I work directly with the public in an administrative office. Once everything is open and I’m logged in, that’s when I take my daily medication. I keep it in my purse so I know I’m taking it at the same time every day.

    Midday looks pretty similar most days. I get an hour and a half for lunch, which I know is something most people don’t get—and I try not to take that for granted.

    Sometimes I go to lunch with coworkers. Sometimes, if I’m feeling good and really locked in, I use that time to walk and get my steps in. Other days, I run errands I wouldn’t have time for otherwise.

    It all depends on how I feel.

    After Work

    Three nights a week, I go to the gym.

    How those workouts go depends on everything—how I slept, how I woke up, how stressful the day was.

    At the height of my powerlifting career, I was spending two hours a night lifting heavy. That’s just not feasible for me anymore.

    I was diagnosed with MS during that time—and I kept going for a long time after.

    Now, I’m about six years into my diagnosis, and things look different. I’ve scaled back, and my workouts are more of a powerbuilding style now. It works better for my body at this stage.

    Over the last few months, I’ve had new symptoms pop up, so I’m learning—again—how to adjust. I do what my body allows, while still pushing myself enough to remind it that I’m still here.

    But by the time I’m done working out, I’m exhausted.

    One night a week, I schedule a grocery pickup that I’ve put together throughout the day. I rarely go into grocery stores anymore. My energy is better spent elsewhere.

    I also schedule things like lash fills, hair appointments, and nail appointments in the evenings. It helps me avoid using my work time off for those things.

    Most of my sick time and personal time is already used for doctor’s appointments, flare-ups, or days when I physically can’t function.

    I’m incredibly lucky to have a job that offers sick time, personal time, and good insurance. I don’t take that for granted. I’m extremely aware that I’m an anomly in the chronic illness community,

    Night Routine

    My nighttime routine is simple.

    When I get home, I eat dinner, shower, and relax however I need to that day.

    I currently live with my best friend and her family, so there’s usually some time spent with them—laughing, talking, just being around people—before I go to my room to read, write, or play video games.

    Some nights, though, I come home and go straight to bed.

    It just depends on how exhausted I am.

    The Reality

    If there’s one thing you should take away from this entire routine, it’s this:

    Everything depends on my fatigue level.

    When I was younger—before my diagnosis—I would go and go and go until I crashed. I would hit a wall so hard that I needed one or two full days to recover. I never understood why I couldn’t keep up with everyone else.

    Exhaustion always seemed to take over my life.

    Post-diagnosis me still pushes too hard sometimes.

    But now, I’m more aware of the cost.

    My body has an alarm system—and it’s loud.

    Fatigue. Brain fog. Weakness.

    It doesn’t gently suggest that I slow down. It forces me to.

    And I’m still learning how to listen before it gets to that point.

    Some days I get it right.
    Some days I don’t.

    Every day I wake up and try.

    XO,

    Samantha Jo