Brushing my teeth and getting ready? I would rather die.

Getting food for myself? UGHHH do I have to do this for the rest of my life?

Another errand? *insert massive eye roll and the longest sigh ever*

Today is a big shower day? Nooooooo

Need to care for others (aka the kittens)? Didn’t I just do this, why don’t kittens have thumbs so they can open the food bag themselves?

It didn’t matter what it was, I didn’t have capacity to do it. Things that wouldn’t normally stress me out, like feeding the goofball kittens, were overwhelming. Then throw in something unexpected, like a snafu or inconvenience and I would crash out. I would hyper fixate on the stressor, continuing to work myself up, instead of using the tools I had to regulate and return to equilibrium after stress.

I had way less tolerance to deal with life and its stressors. Patience, compassion, care and most importantly my capacity was at an all time low.

During this time life piled up. Before I knew it, my to-do list was out of control, my environment was chaotic and it was too daunting to get back on track. Especially while on the rollercoaster ride of chronic illness life - some days I would feel ok, but other days I felt like shit. On those days last thing I wanted to do was sort through my overwhelming life.

However, eventually I got to the point where I knew something needed to change. I took a step back and focused on what I could control - which includes reframing my thoughts and building my capacity for stress.

Let’s get into both those things…

Reframing Thoughts

I started with observing my thoughts, I noticed I was stopping myself before I even had a chance to actually assess how I felt about said task. I would think of something I had to do and before the thought even finished, I would catch myself saying ‘no, I can’t do that’ or bitching about it in some other way.

If you know me you know I love a good bitch fest, but life is about balance and I was too heavy on the bitching. So, I needed to be honest and hold myself accountable. Because when I shut myself down before I even got started on a task, I was telling my brain and body that I couldn’t do it. Worse, my brain and body were believing it. When I actually did the task, it would feel unbearable - like it was sucking the very last of my energy. Once I finished the task I would be so worn out and so over it that I would collapse in exasperation.

This happened countless times per day and like anything that happens consistently, it began to add up in a big way. Living became much harder - I had to really pep myself up to do basic care and chores. When I wasn’t barely surviving, I became one with the couch - so tired and heavy with no will to move, while my mind raced of all the things I couldn’t (or was choosing not to) do. It was like being trapped in a prison of my own making.

While I can’t always control basic tasks/chores I need to do, nor can I control the surprise stressors, I can shift my outlook. To be clear this isn’t about looking at life through rose colored glasses or drowning yourself in toxic positivity. It’s about being mindful of what you think and how you talk to yourself so you don’t add salt onto the wound. Like, it’s already hard enough for me to brush my teeth and get ready right now, it does absolutely no good to complain about it too. Instead, I can use my thoughts as an aid, helping me get through tasks I don’t want to do.

Reframing thoughts to serve you better is key.

If being my own personal cheerleader pepping myself up to get ready is too hard to do, I can at least approach the tasks as neutral. For example, I can say ‘ok, go pick out a top and bottoms’ instead of ‘ughhhh another day, wtf am I going to wear, I hate this’. See how the first one feels softer and more encouraging than the other?

Another thing I noticed with my thoughts was that MS symptoms turned into the catch all excuse for why I couldn’t do something. And yes, of course, there are plenty of times when symptoms are high and life needs to be adjusted. But also yes, there are times when I can think the symptom to be much larger and impactful than it actually is.

It’s up to me to hold myself accountable and discern the difference between the two. That requires radical honesty with yourself and to call yourself out on your bs. It also requires you to sometimes do things you don’t want to do, which is lame 🙃, but this is life and sometimes things just need to get done, even if they aren’t pleasurable all the time.

Ok, so the first piece of my mind overhaul - reflecting on and reframing my thoughts - was set into action. Next up was building up my ability to handle the bullshit without having a full on breakdown. 🙌🏼

Rebuilding Capacity

Earlier, I talked about how my normal to-dos were overwhelming and also how surprise stressors would result in me staying anxious and on edge for an extended period, which would suck all my mental and physical energy. Both of these things are signs that my capacity or tolerance for life’s natural ups and downs is non-existent.

Now, of course once I realized this, I was sad that this was my current reality. I was angry I let it get to this point. I was grieving the loss of who I used to be. I was thrown into many emotions, all of which seemed to have a death grip on me. I knew where ruminating on this would get me into an even darker deep hole. I didn’t want that for even a minute longer so I took a big, bird’s eye view of stress and my behaviors.

Stress tends to speed everything up - your thoughts race, your vision narrows, you actively look for ‘threats’ and are restless - everything feels urgent. You may feel uncertain and fearful too. I know I did. This makes sense because you are literally in survival mode - your body and mind is only concerned with surviving this moment in time. Threats become magnified and your senses are activated so you are taking in a lot of extra sensory information.

That part about extra sensory information, was the thing that would push me over the edge. See, I experience cognitive issues from MS. So multitasking is becoming increasingly harder to do - being flooded with too much information causes my brain to feel like it is short circuiting and smoke is coming out of my ears. I literally shut down.

Being really stressed, in survival mode, and inundated with sensory information and perceived threats was/is way too taxing on my system.

The antidote to stress is to slow down, like really slooooooowwww down. Not in a melt into the couch and dissociate for hours way though, more in an intentional and mindful way. The goal is to send signals to your body that it is safe which results your mind receiving signals from your body that it’s ok. Then, you shift out of survival mode.

The quickest way to do this is by hacking into your sensory system - use your sense of smell, touch, sight, hearing and taste to remind your mind that while life is stressful, you are safe and just experiencing discomfort. This could mean doing a breathing technique designed to provide serenity, smelling a relaxing scent, touching something soft, widening your view (aka stop looking at a screen), listening to calming music, or drinking some chamomile tea.

Note: obviously this is different if you are in a situation where your safety is actually threatened. If that is the case, please reach out to loved ones or professionals for help.

All that said, if you are like me, you may be thinking, the world is burning, I’m losing my mind, how am I supposed to slow down?

Well, first it’s not all or nothing or black and white. It’s not realistic to always be in slow mode, just like how it’s not realistic to always be in fast, stressed out mode. It’s about finding a few little moments throughout the day to slow down. Or try slowing down in one specific way (like reducing social media time or taking a few moments to breathe and wake up before getting out of bed) and see how that feels.

Here are some examples of what I am doing:

• No phone or TV in the morning - I used to have it on as background, but I realized it was too jarring and made it hard to slowly wake up. Now I sit and watch the birds with the mitten kittens, Wes and Hazel, and eat my breakfast. By limiting screen time, I can tell a positive difference in my cognitive capacity throughout the day too. Which, totally makes sense to me, if you give your body and mind time to slowly wake up and establish comfort and peace without a screen in front of you sucking your half sleepy attention, its going to give you more capacity throughout your day.

• Creative/Play time - I realized I do a lot of couch rotting to be frank, and while I love me a good couch rot time, I need to keep myself in check. Otherwise, my brain and body turn into mush. Sooooo I have started having a low stakes creative activity to do while on the couch to get my brain involved. It’s like an adult play time where I can just do something fun. It’s way better than endlessly scrolling on social media or binge watching tv excessively. My creative activity is coloring, but doing puzzles or another hobby works too! Some days I even color in a sun spot like a cat haha. It’s the best tbh - it’s a great low stakes activity that is creative and playful, which sends signals to my body to relax in a way that is restorative.

• Nighttime Routine - I had a nighttime routine before, but recently I added a small self care step to ensure I do at least one thing that will help me wind down before bed. It’s a little ritual just for me - what I decide to do that night depends on my mood. Some nights I read, other nights I add a lavender shower bomb to my shower, or I will spend time playing with the kittens or do a little face and neck massage with facial oil. It’s just enough to signal to my body it’s time to wind down. Plus, it’s a nice way to give myself some positive attention at the end of each day.

• Movement snacks - I’ve been sitting more lately, which as a fidgety person, is really hard. To expel some energy, I do static or dynamic stretches, bodyweight exercises, yoga poses as movement snacks throughout the day. Not only does this help me feel less stiff and tight throughout the day, it quiets my mind and gets my blood flowing too (bye fatigue).

• Breathing Techniques - This I whip out when I am really stressing and need to calm down. I have tried lots of different breathing patterns and this is my favorite. Inhale into your belly, then pause for 1 second, then inhale into your chest, then pause for 1 second. Then exhale it ALL out. Repeat a few times. I also LOVE a good deep sigh - ah, so gratifying!

• Mindfully eating meals - Ok, I am not going to lie and act like I enjoy mindfully eating my meal instead of eating in front of a screen or doing some other task. But as I said above, multitasking has become quite fucking difficult (thanks stress and ms) so we’re improvising over here. This includes mindfully eating meals, and let me tell you, it’s actually really nice. I feel more satisfied after eating and less stressed because I am not trying to eat and do something else.

• Get social - Face timing a friend, or meeting them in person can be a great way to not only connect with someone meaningful to you, but also regulate and destress together. As a natural introvert, this one is challenging for me. But again, it’s not all or nothing. Maybe I don’t connect with a friend, but I chat up strangers that I run into during the day, like at the grocery store or my co-working space. Just getting that touch of personal connection is what matters.

Personally, I picked these things because they are small and accessible changes I can do right now. While doing them, I really noticed how it felt and celebrated myself when I did show up for myself. If I missed doing a new habit one day, I’m kind to myself. I don’t beat myself up, I just start back the next day.

As I incorporate more of these things into my regular routine, they will become habits and slowly build my capacity and enrich my life. It’s been a few months and I have noticed that I have more bandwidth when something frustrating or unplanned happens aka I don’t crash out immediately, which is a welcome change! Also, I have had more energy, stamina and endurance throughout the day which is a sign that my capacity is rebuilding.

And look, I’m no stranger to living with chronic illness, I get this stuff is not easy. The good news is that you still have a choice. Life is going to be hard regardless so choose your hard.

Personally, I am choosing to focus on what I can control and create a full life even with abundant stressors and the bestie I never asked for in tow (aka MS).

What about you? How have you been feeling from a stress standpoint lately? And what do you do to destress and recharge your battery?

I like to recognize December 5th every year. I totally understand that to some remembering the exact day you life was flipped upside down AND recognizing it every year may seem odd, but not to me.

The way I see it, the day I was diagnosed served as a big ass PERIOD. It was the closing of the chapter of my life before I became chronically ill.

Every anniversary signifies another year of trials, victories, tribulations, wtf moments, wins, challenges, struggles and triumphs. It marks another year of my life where I came out the other side. It reminds me of my resiliency, my determination, my strength - so why NOT celebrate it? Even if the celebration is small and in the form of me standing a bit taller that day, I fucking deserve a celebration, damn it! 💁🏻‍♀️

This year was different though, because instead of standing proud that I made it through another year, I felt weighed down and burdened by the year.

Why?

This was the year of 5-12 doctor appointments EVERY (FUCKING) WEEK. Yes, all caps was intentional and extremely necessary. 🙃

This was the year I had to choose doctor appointments and my health over a full time job.

This was the year I developed two new autoimmune conditions.

This was the year where managing my health felt like an endless list of to dos just to merely exist.

This was the year I had to make the hardest medicine decisions of my life, balancing risk vs rewards in ways I have never had to before.

This was the year I felt imprisoned by my health and the healthcare system.

This was the year where I truly felt like I had no idea what to do at times in regards to my health, usually I have a gut feeling, but it was hard to tap into that this year.

This was the year Lilly died, marking the end of our original crew and changing our family forever.

This was the year I desperately treaded water, just to try to survive.

Rarely things are black and white, and all those hard times above existed among softer moments too…

This was also the year I started working out regularly with a physical therapist and personal trainer. This was the year I took group fitness classes again (first time in 4 years!). 💪🏼

This was the year we got two new kittens - Wes and Hazel. 😻😻

This was the year I went from one traumatic experience to the next, with glimmers in between.

This was the year I participated in my first in person speaking experience about MS. 🧡

This was the year where relationships were stretched, twisted, challenged, and transformed.

This was the year I had to accept and adjust, time and time again.

This was the year of LOW lows and HIGH highs and so much more not listed above.

Just writing this brings up a lot of conflicting emotions - it’s also cathartic (in the best sense of the word). I have been so bogged down by all this crap and typing it out is helpful in releasing the headache that this year was. It also helps me realize that there were small reprieves, tiny wins and at the end of this tumultuous year, I am still standing. Which, may be the most important insight of all!

This anniversary also had another milestone to it - I have officially lived with MS more than I have lived without it. That feels like the closing of another chapter - another ending in this strange journey with an illness. Even after 20 years, MS continues to change me, forcing me to shift, flow, evolve and bend so I don’t break.

When I was younger, I always wondered what this anniversary of living with MS longer than I have lived without it, would feel like, where I would be with MS, what life would be like, and now I finally know.

In some ways it is what I expected, in other ways it is vastly different than what I thought, but regardless I’m proud of myself for getting here. Accepting how it is and continuing to show up, move onward, and live life with MS, the bestie I never asked for is all I can do, so that is what I will do.

It’s not like there HAS to be a lesson after this shit show of a year, but IF there was, maybe it is that some years are just hard. Some years add more gray hair, some years feel like you are trudging through heavy ass mud, some years feel like you are moving backward. THOSE are the years to really celebrate, even if all I can muster is a meek ‘happy anniversary of this crap’. Because even if it wasn’t as pretty as some of the other years, I still showed up, I still did the damn thing, and THAT is something to be proud of.

What about you? Where are you in your chronic illness journey? What have you learned? Drop it in a comment below!

September through December of 2024 was spent trying to mentally wrap my head around what was going on, advocate for myself and just trying to stay above water quite frankly.

January through March acceptance kicked in, but my efforts to heal and slowly build back to where I was were not working. I was trying to do everything I could to take care of myself on my own but could not make any head way. Workouts were scaled to what I thought I could do, but they would leave me extra fatigued and sore for days. I couldn’t find a good rhythm with preparing healthy meals. Managing stress felt impossible because I could only see the things I couldn’t do.

It was a dark time. I felt like I was in quicksand slowly getting pulled under and watching my old life slip away for good.  I felt like a major failure. Here I am, a Chronic Illness Guide and Patient Leader and I can’t even get my own shit together. Instead I was just spinning my wheels and not getting anywhere.

Then one day I was driving home from yet another doctor appointment and passed a gym called Upright Athlete that offers physical therapy and personal training. In a sudden burst of motivation and hope I called and set up an appointment with a physical therapist name Patricia.

Prior to meeting, I did what any normal person would do and I looked her up online. I was flooded with a rush of excitement and fear. Patricia reminded me SO much of who I was a few years ago - happy, super fit, energetic, passionate and strong. I knew this was going to be a good fit, but damn, I was NERVOUS. I think those nerves really came out on my intake form because I wrote a fucking NOVEL about the last few years, where I was, where I am now, and where I want to go. More info is better than less right?!?! 🫠

Prepping for the first meeting was a tad bit of a rollercoaster - I was equal parts anxious and excited, and picking an outfit that was acceptable was hard because none of my clothes fit, but like everything I made it work!

During our initial meeting Patricia did all the assessments, we discussed goals and started with very small workouts. I remember that first bike warm up vividly. I was thinking ‘this is too much, how am I going to get through this as a warm up AND do the workout?’ But lo and behold with Patricia’s guidance and encouragement I made it through.

In the beginning I really, REALLLLLLY had to remind myself to just show up and stick with it. Often I was so discouraged about what we were doing, that it was hard to celebrate it. I was more irritated that my body didn’t move how I wanted it too, that ‘simple’ things were so difficult now. I just wanted to jump back into workouts I used to be able to do. Thank god for Patricia because she kept me on track, checked me when I was being a negative Nancy and made sure I pushed myself, but not too hard.

I met with Patricia 1-2 times per week, took Seated Pilates with DK at Movement Remedies 1-2x a week and walked with a friend or did a small strength training workout on my own 1x/week. I started cooking meals again too, at first it was only a couple nights a week, but I slowly built up to making sure we had a balanced dinner most nights of the week.

None of that was easy. Incorporating new habits is hard and doing it while grieving the loss of who you used to be is even harder. I knew I could either stay where I was and get stuck in grief, or do something different to get somewhere different. I know from the past that focusing on the past isn’t actually helpful, so I kept reframing my thoughts and showing up. Day after day I just kept putting one foot in front of the other.

After about 3 months I noticed I felt more stable overall. My hip stopped hurting all the time. I wasn’t as guarded when I moved. Patricia and I celebrated these wins. It was really nice to feel supported. For the longest time I felt like as a personal trainer, I should be able to write my own workouts and figure it out on my own. Now I see I didn’t have the capacity for that and what I needed was a fresh set of eyes to help, which is exactly what Patricia did! 💪🏼

The next two months we started testing out different movements and heavier weights that were similar to things I used to do. Let me tell you, getting back to hip thrusting and squatting with a barbell and deadlifting with a trap bar was such a cool experience. And, it was even better not having to set all the weights up myself haha (thanks Patricia!).

By September 2025, a full year after the initial downfall, I was starting to see glimpses of the strength I was used to. Don’t get me wrong I am no where near where I was, but it’s night and day compared to where I was and I’ll gladly take that.

One session Patricia mentioned she was doing a strength training for runners group fitness class for 8 weeks starting in October. Since I used to manage boutique fitness studios and I practically lived in group fitness classes back in the day, my ears perked up. I thought I could give her class a try. While I am not a runner by any means, she assured me that didn’t matter. The strength training exercises would help anyone build strength and stability. I was sold. I recruited my husband to join me, because we both used to take group fitness classes and I thought it would be a fun experience to get back into that and improve our health together. He agreed and we started the first week of October.

The first day of class was a little nerve wracking because it was something new and different. Patricia had mentioned ahead of time the warm up would be a short jog around the building. Immediately I got tense, I hadn’t run in literally years. It was daunting and I was hesitant to add something new (the running warm up) on top of something new (the group strength training class) so I did a warm up on the bike instead. That way I could do a warm up that was more comfortable doing, and use the actual class as my uncomfortable/trying something new thing. And, I wasn’t doing a bunch of new stuff all at once. I did that for the first two classes, just to get a handle on how my body responded to this new form of activity.

To my surprise, class was the perfect amount of intensity, I was tired at the end, but not exceptionally so. I was a little sore the next day, but not bad. I was really pleased. Plus, being around people and working out together filled my heart so much. I forgot how much I enjoy fitness classes!

Then came the second week of classes. The weather cooled down, and my husband said the lap around the building wasn’t too bad. It was time to try running for a warm up.

And ya know what?

I made it.

Not only that, when I came in Patricia congratulated me and the rest of the class heard, most of whom are all more serious runners and they all clapped and were so happy for me. (I may or may not be tearing up writing that) 🙃

Being celebrated by others was such a cool experience. Often life with illness feels lonely and isolating. Plus, I rely on my own positive self talk a lot, and tbh sometimes I don’t have it in me and its just exhausting. Having Patricia and the rest of the class offer words of encouragement and support was SO nice. It showed me that there is something really powerful in letting yourself be vulnerable, sharing your story and allowing others to support you in your journey. Ya gotta put yourself out there to be seen and celebrated after all!

After class that day I realized that yes, I have limitations. But also yes, by continuing to show up day after day for months, I’m making progress and slowly but surely I am actively shifting the limitations I have. 💪🏼

The thing with chronic illness and MS is that there will be setbacks and limitations - that part is inevitable. The setbacks and limitations don’t define you, it’s what you do in response to them that matters. Remember, you always have a choice, you may not like the choices you have, but you do have a choice. You can do more of the same or try something new in hopes of getting a different result. Even if you can’t do what you used to be able to, something is better than nothing. Plus, that something is going to get you closer to where you were than doing nothing. I know that for sure.

Alright, I just glanced up to check the time as I write this article - our next class starts in an hour and a half and I had a realization. The exciting part about all this is I conquered a fear and voluntarily ran for the first time in years. The blah part about this is now I gotta do the running warm up every class, but I have that lovely memory to draw on when I don’t want to jog and that will give me the motivation boost to get my ass in gear. It’s time to keep doing something in order to get somewhere new. 🙌🏼

Overall it is reasonably quick to make and you can add a bed of lettuce and some lean protein for a complete meal. Normally, I will bake chicken breasts with herbs, olive oil and bone broth while I make this salad. That way everything is done around the same time and I have a nutritionally rich, complete meal.

Enjoy!

With chronic illness this message becomes even more pertinent. However, depending on where you are in your journey with illness, or just how you feel that day tbh, you may scoff at the sentiment.

I know I have said ‘fuck your perspective, this shit sucks’ more times than I can count. And that is valid of course.

However, when I have capacity to really explore the statement ‘perspective is everything’ I see what it really means…

Your perspective influences the story you tell yourself - it’s the lens that you use to view the world. That lens is based on past experiences, emotions, thoughts and so much more. Your perspective can foster growth and happiness or keep you stuck and fearful.

Your perspective truly is everything.

Something new like a purchasing a new car can be really exciting and fun. So you may think new = fun. But, it’s not black and white like that, very few things are. Conversely, something new like starting a new medicine can be terrifying because of the unknown. Both things are new, but the emotions and experience of each greatly differ.

How can the similar experience of something new, be so different from each other?

Well, it’s a matter of perspective.

Or you may hear people (me included) say they are grateful for their illness because of the lessons it has taught them. But maybe you are freshly diagnosed and hating every doctor visit and despising this new reality. Your perspective undoubtably will be drastically different, and I can guarantee it isn’t one of gratitude, but it will shape your experience nonetheless.

How can two people experience the same thing and have different views?

It’s a matter of perspective.

Our perspective has the ability to shape our world and define our reality. Perspective is influenced by many things, including our past experiences, our reality, family, friends, age, culture, race, gender, societal expectations, education, health experiences, beliefs, your current state of mind and SO much more. It is some seriously powerful shit that can be used as a tool to positively or negatively affect your life.

The good news is that perspective can be shifted.

But how?

ZOOM OUT

Ya know, get out of the current whirlwind and sticky emotions and pause, zoom out and reflect.

Observe your experience mindfully, from a bird’s eye view and explore how you are thinking and what you are feeling without judgments, comparisons, critiques and all-or-nothing or black and white thinking.

In the example about trying a new medicine, you may notice you are feeling scared or angry or sad. Once you observe that, you can reflect on why you feel that way. Perhaps you are scared because of the unknown. You can then validate your feelings and reframe them in a way that is neutral and focuses on what you can control.

This looks like reminding yourself that it is normal to be scared when things are new. You can remind yourself why you picked this medicine, the benefits of it, that you can do hard things, and that you have a support in your healthcare team to navigate this transition.

And sometimes, it is about just letting things be - even the uncomfortable things. Scratch that, ESPECIALLY the uncomfortable things.

It’s not normal to absolutely love every single thing that happens in your life. Sometimes you have to get comfortable being uncomfortable, trusting that with time and experience, the new and scary will become familiar and less scary.

Now, I am not saying that it’s fun, or that’s how things ‘should’ be, but unfortunately I don’t have the power to make all chronic illnesses disappear. All I can do is give insight into how to live with them - key word being ‘with’. The more you fight your illness, fight how you feel, or fight reality, the harder things will be.

Accepting your reality and focusing on what you can do in the moment not only restores your power and agency in the situation, it helps shift your perspective - and it adds a little hope into it too.

CHALLENGE YOUR VIEWPOINT

Another option is to actively challenge your current viewpoint . What if instead of focusing solely on the unknown or the possible side effects you consider the alternate perspectives? What if the medicine works? What if there are minimal side effects?

As humans we are conditioned to see negatives and focus on unknowns, but just because something is new and/or unknown doesn’t mean it will inherently be bad.

Yes, something new and unknown can be scary, it could also be the beginning of the rest of your life. Maybe the medicine controls relapses and you get back to living how you want to, maybe it gives you more freedom, maybe there are side effects but they are manageable. Those are very possible outcomes too. What about focusing on those?

Doom and gloom isn’t the only perspective after all.

REAL LIFE EXAMPLE

Recently, when I was starting a new medicine I had SO many emotions - I could feel my mind becoming more chaotic and my body tensing up. This is my sign to zoom out and reflect.

I asked myself how I felt about it - I was scared. I was sad. I was overwhelmed and confused. Here I am 19 years into having MS and feeling like how I did when I was diagnosed. I felt defeated…like I was back to square one.

The first step is becoming aware that those emotions even exist. Then, the next step is validating those emotions. I did this by telling myself ‘I believe you. This is a lot to hold and what I am experiencing is valid. It is not comfortable, but I accept that it is my current reality’.

Bringing these emotions into my awareness and acknowledging them is powerful - it takes your body down a notch b/c you don’t have to fight to prove that you are feeling this way.

Without the fight, I was able to continue exploring the thoughts that came up. I had worries that this medicine wouldn’t work, that I would have a relapse, that I would lose more function. But, again, I reflected on those thoughts without judgment. I realized that I was devoting precious time and energy to things that haven’t even happened yet.

I reminded myself that worrying does not change the outcome, and I let those thoughts go. I have too little time and energy to devote it to things I can not change. Plus, there are so many things I can focus on that WILL shift my future for the better and make my present moment more enjoyable. I can focus on reframing my thoughts, accepting what I can’t change, hydrating myself, managing stress, eating nutrient rich food, prioritizing sleep and incorporating movement into my day. All those things help me feel better and set future me up for success.

By becoming aware of my emotions, acknowledging and accepting them (and how uncomfortable they are), I can shift into action. I like to call it acceptance in action.

I ask myself what do I need in this moment? And to be honest, it depends.

Sometimes, I need a coping strategy because shit like this is hard and uncomfortable, and there is no shame in whipping out a coping strategy to soften the discomfort.*

*obviously it needs to be something that isn’t going to hurt you or others

Other times, I need to get into physical action, moving my body to flush out the activating emotions of overwhelm and fear, or doing something that restores my sense of agency and reminds me that this is a passing moment of discomfort. Even something as simple as mindfully setting up lunch for myself and focusing on how I am intentionally choosing myself and my health even though I am uncomfortable, is some powerful shit.

It just takes one step in the other direction, one small change to shift your trajectory.

Remember, emotions are like waves, they will ebb and flow, reaching a crest and then retreat. Of course they may come back, but you now have that history to fall back on and harness confidence from - you’ve been through discomfort before, you’ve been through challenges plenty, and you have survived. This time is no different.

That perspective shift, one from fear and helplessness to one of power and confidence, channels the uncomfortable energy into something that can help you learn and grow, instead of permanently knocking you down.

At the end of the day, shifting your perspective is not easy, it may require lots of zooming out, lots of reflecting, lots of acceptance in action and challenging your current viewpoint. And while that isn’t ideal, focusing on how it’s not ideal just distracts you and sends you further down into a black hole. It’s accepting that it’s not ideal and then saying ‘what am i going to do about it?’ that shifts that energy into forward momentum.

What perspectives do you find yourself holding on to? Are they helping you or hurting?

We’re all in this together - share ‘em below 👇🏼

In 2005 when I was diagnosed with MS my foundation was rocked (like, obviously lol). One of the many things that initial relapse affected was the sensation on my left foot. It felt numb, but not paralyzed. Kind of like I have 5 thick wool socks on making it difficult to feel my foot striking the ground.

Over the years that left foot didn’t really heal - I learned to work around it by relying on mirrors, muscle memory and visual or verbal cues when exercising to ensure my left foot hit the ground correctly.

Although I was more or less oblivious to this at the time, now reflecting back, I see how my numb foot increased the amount of disconnection I felt in my body and my world. Having the sensation of a thick layer of protection between the ground and my feet made it challenging to fully interact, perceive and feel my world around me. No wonder why balancing was hard.

Fast forward to almost 20 years and my left foot has become more numb. It hasn’t helped that I have not been exercising or moving the same way which has resulted in weakness in both my feet and my lower body overall. I feel even more disconnected, more floppy and heavy. I have less control over my movement. My confidence while moving has plummeted too.

On long walks I usually have at least 1 stumble, ankle roll, and/or foot drag that really takes me off balance (but I haven’t completely wiped out yet, knock on wood). The writing is on the wall that my feet, my stability, and the way I connect to my world is not as strong and I am feeling the effects of it.

A NOTE ON SENSES

To take a bit of a (relevant) detour, let’s chat senses. Our senses give us valuable information about our world, which our nervous system then responds too. What we see, smell, hear, touch and taste can all influence our thoughts, our emotions, our well being and our body. It’s powerful stuff.

When your brain registers a smell, a texture, a sound, a taste, or something visual, it is brought into your awareness - front and center. Think about smelling lavender when you are stressed out - it can provide instant calming and soothing vibes. Or smelling jasmine or other flowers can bring on joyful sensations. Listening to music can have a profound effect on your mood and energy. Touching something soft can usher in comfort. Texture provides contrast, making it easier to perceive if something is smooth or not. It’s all because of the power of your senses.

For example, if your foot is numb, you may not be able to feel minute differences in texture, but when touching a texture that is more pronounced your brain is able to tell a difference. When this happens your sensory receptors in that area are more or less ‘turned on’ which then puts that body part front and center in your mind - it brings it to your awareness which, when paired with movement can help reconnect the mind-muscle connection.

Knowing the struggles I have with walking and the power that lies in sensory stimulation, I decided to explore ways to stimulate my senses to positively affect my ability to move.

Enter Naboso Technology - created by Functional Podiatrist and Human Movement Specialist Dr. Emily Splichal.

Naboso’s products are the first small nerve proprioceptive insoles and mats designed to stimulate the nervous system and enhance movement quality. The texture on their products is a patented, two point stimulation - kind of like Braille. This specific stimuli (aka the height and spacing of the bumps) is designed to speak to your nervous system directly. The result is that you can move better, feel better, and have more confidence when moving through life.

USING YOUR SENSES + Why it works

As far as movement is concerned, sensory stimulation includes what we take in visually and what we touch or feel, but also includes information from our joints. We have proprioceptive receptors there - whenever we move, stand, or shift, our joints our stimulated. Then, they send out information to our brains about where our bodies are in space.

Our smart bodies then compile all this sensory information to control our posture and inform our awareness on where and how our body moves through that space. This all happens in the background, but with MS it can get jumbled and become even more muted.

But, there is hope!

As Dr. Emily explains in our LIVE Chat, which is 30 minutes of pure gold btw, Naboso’s products can take this background process and turn the volume up on it by stimulating our senses through texture. This brings those sensory cues to the foreground and our bodies can ‘hear’ it better, making it easier to understand where we are in space.

Essentially, they help make your foot placement more conscious so you can connect to it. Then, you can put it back in the background, and still maintain proper form, resulting in fluid and confident movement. How fucking cool is that?!?

The Review

I was skeptical at first, but knowing the power of senses and leaning on my background in fitness I decided to give it a try. I purchased a few things first, but then was SO impressed, I went all in.

To be clear this is not an ad. I purchased their products with my own money and am giving my honest review. And, in full disclosure, I love and believe in their stuff SO much I am an affiliate. This means you can receive 10% off their products with the code SAMTLC. Y’all know I am not going to promote things unless I firmly stand behind their mission and their products, and Dr. Emily Splichal and Naboso is the real deal.

Here’s what I got:

• Insoles: to use in my sneakers, especially the ones that are more for ‘fashion’ which left me looking cute, but were lacking support so walking in them required more effort which would zap my energy. Plus my hips would hurt because I was clomping around in shoes instead of having proper form while walking. These I purchased so I could keep wearing my cute shoes, without feeling like an unstable mess.

• Grippy socks: to use during Pilates because they not only have the grips on the outside, they have the same textured inside that is on the insoles. My hope was that these would help strengthen the mind muscle connection with my feet during Pilates classes and other workouts.

• Foot Splays: to separate my toes at night and help with recovery. In addition to MS, I have neuromas on my feet, which can be extremely painful. Wearing the splays at night for 20 mins help open my feet up and recover after a long day. Honestly, I had major doubts about the splays, and those were all squashed after using them just a few times.

• Kinesis Board: to use with simple exercises to practice my balance, strengthen my mind muscle connection, and help overall stability. To be frank, it really pisses me off my balance isn’t what it used to be. Balance is a skill though, and with practice it can improve, which is what I use the board for. There are simple exercises provided with the board, so it’s all really straightforward.

• Neuro Ball: to use to simultaneously roll out my feet, massage and activate them. Plus, it splits in two and has an even smaller ball inside to provide more versatility and relief.

I said earlier I initially did one order and then was so pleased, I ordered a few more things. And truly, each of the items I got serve their own unique purpose. All the items did what they said they would do, the quality is great and the customer service is top notch.

Naboso also offers lots of free education and resources on their website and YouTube channel, which I love, because it shows that they are really invested in their customer’s success and movement journeys.

To be 100% honest, one of the biggest things I was not expecting was the confidence that came with the products!

By being able to feel my feet more, I naturally became more confident with my movement. I don’t think I even fully recognized how low my confidence was, nor did I see how it bled into other areas of my life. But now I hesitate less. I have less fear around doing basic activities. I feel less stuck and hopeless. I have agency back, and I believe that I can positively influence my movement journey, which is such a priceless feeling.

Learn More

If you read this and want to learn more, here’s where ya can go…

Naboso’s Website - don’t forget to use code SAMTLC for 10%!

Naboso’s YouTube Channel

The LIFT Collective x Naboso LIVE Chat

Thoughts? Questions? Feedback? Drop it in the comments!

Oh and btw for those of you with pins and needles/tingling or other forms of neuropathy…If you have concerns that Naboso’s products could exacerbate neuropath, Dr. Emily touched on this in the live. The products have been designed to affect different receptors and wake up different nerve endings in a way that does NOT exacerbate neuropathies. Yay!

But in the last 4 years, I experienced stressors on top of stressors and slowly lost the life and person I built. During that time I have experienced chronic stress in a way I never have in my 39 years of life. Like, unrelenting, trauma after trauma stress. I had no time to recover in between. Plus, I live in America, and well…it’s terrifying here.

In turn, my sensitivity to stress has escalated - things that normally are not stressful, leave my heart pounding and mind racing which leaves little time for recovery. Basically, I feel like a fried wire and that is not a great place to be, especially with MS.

This isn’t a brag, or a have pity on me type of thing, it’s just the season of life I am in. I’m aware of that, but just because I’m aware of it doesn’t mean I accept it. I mean, let’s be real, it is a lot to accept, so of course it is going to be a slow process.

I opened my business at the end of 2021, and it has been more challenging than I ever thought possible. Every thing was new and despite opening and managing fitness studios, this is different and the learning curve is steep. Being a one woman show starting from scratch is a lot.

Despite having MS since 2005, in 2022 MS became more challenging and unpredictable than it was before. Then in January 2023, it progressed - my diagnosis shifted from Relapsing Remitting MS to Active Secondary Progressive MS.

Later in 2023, our family of 4, unexpectedly shrunk to a family of 3 (RIP sweet Cliff). I still miss our orange fur ball and long to hear is incessant meows again. That was also the year our other fur ball, Miss Lilly became chronically ill. While she is living her best life now, she also requires more care than the average feline, and she gets what we like to lovingly refer to as Cadillac Care - the highest level of TLC. She was given 4 months to live and is still here being a bossy, energetic, cranky, old lady a year and a half later. Which, to be honest has reinforced my belief that love is an integral component in enhancing quality of life and healing.

Speaking of love, marriage is hard. Adam and I started dating when we were barely 20 years old. Our birthdays are this week and we are turning 39. You grow a LOT during that time. Growing pains in relationships are very real, especially two decades in. Plus, it is no secret that doing life with someone is challenging, then add in a chronic illness, health struggles, death, financial concerns and everything else and it is very easy to become disconnected.

And, like the world, I had my social system and life completely uprooted in 2020 due to the pandemic. And unlike most of the world, as an immunosuppressed person, I live a life that is more isolated even though its five years later.

It all came to a head in 2024. For the last year the feelings of stress and overwhelm have been very isolating. The grief has been overwhelming. At times it comes in waves of sadness, other times it is moments of anger, often it is just a feeling of heaviness and despair. There is a tangible absence of happiness, joy, pleasure, lightheartedness and at times things feel very dark and devoid of hope.

When I started my business back in 2021, I felt firmly grounded in who I was, my values, my priorities and what I could offer the world of chronic illness. Just thinking about that happy, healthy girl registering her business on Christmas Day makes me tear up. I feel so far from that girl excited to start a new chapter. Because now, after endless traumatic stressors (and other stresses not listed…b/c privacy), I feel lost. I don’t feel confident. My body doesn’t move how it used to. My emotions are overwhelming and my brain never turns off. It’s harder than ever to run a business, not to mention exist in the most basic sense of the word.

Things I used to do with ease, like hold conversations, navigate public, workout, cook meals, multitask, process my surroundings or what is being said in an convo are all becoming increasingly difficult. Even writing this is making me figgity - like I don’t want to air my struggles. I mean, I have thought about writing this for 5 months, but I find myself constantly punting the task because it’s all so fresh.

Grief and change is very destabilizing.

I just want things to go back to how they were, ya know? I would prefer to not need to rebuild from the ashes. But, that’s not going to happen. I know and have recently accepted that. Acceptance doesn’t come easy though, plus it is an ongoing process.

I thought after spending years fine tuning how I manage and live with MS, I could handle whatever changes came my way. But that coupled with seemingly endless traumatic stress over the last 5 years has been too much. And, because it was so draining, it limited my bandwidth - making it nearly impossible to work through and recover from all these changes. In turn, I doubt myself even more…and become more stuck.

And that is where I have been mentally and emotionally since the end of last year - stuck.Like, REAL STUCK.

I haven’t shared too much about it, because I was trying to wrap my head around having so many aspects of my life in flux. Plus, the daily, weekly, monthly demands of being a (semi) functioning adult in society make it even harder to find my footing. And I kept hoping things would magically switch back, if I just wished and hoped hard enough.

It’s weird, like I know that is not realistic, but I was holding on to hope that there would be some magical exception for me.

Logical? No. But, we all know our thoughts aren’t always logical when we are swimming in stress.

The last month I have refocused on practicing what I preach - taking small steps and focusing on progress, no matter how small, over perfection. In turn, there have been tiny, tiny glimmers along the way - emphasis on the word tiny. 😊

Here’s an example of one:

Last week I was driving to yet another doctor appointment. However this drive was different. It was sunny outside, the wisteria was blooming and it lines parts of the highway with beautiful purple flowers. It was one of those moments where the outside is showing so much life and promise you can actually feel the energy.. But deeper inside I was reflecting on how defeated and lost I felt and was starting to get angry. I was frustrated I was stuck driving to the doctors…again.

The softness of the outside must have infiltrated my internal world though because amidst the negative feelings I had a thought…

‘Well, even if I am not the exact same person as before, I still have a lot of those qualities that I used to have like strength, perseverance, authenticity and courage - I am still here after all. They are just buried now. What if I leaned back into those to help me now?’

A glimmer.

My mind kept going, as it does, and believe it or not a glimpse of gratitude snuck in.

I thought ‘maybe all these stressors are just a twisted blessing in disguise because now I really, like, really, realllllllyyyyy know what a toll chronic stress can take on the human body, especially with a chronic illness’.

Then I kept traveling down that line of thought…

I may have been and am still going through hell, but it has taught me so much. Not only that, I have seen first hand the effects of stress. I have learned how to regulate my nervous system and now practice being more flexible, accepting and adapting. While it’s not perfect, progress is happening, even if it is slower than I would prefer and hard to recognize in the moment.

Don’t get me wrong, I often want to curl up in a ball and hide (or stomp and scream) at times. However, all those panic attacks and anxious days had their place. They have been teachers in their own right.

I felt a small sense of accomplishment for weathering the storms at all.

I realized that through the chaos of the last year, I got SO far away from paying attention and celebrating when I did something to care for myself. I would complain, critique or be angry instead. My internal monologue was so cranky and bitchy - like ‘ughhhh now I have to cook, but I don’t have energy, why is this so hard? I hate it here.’

No wonder why life was dismal and everything felt like a battle. That language made it so much worse because it turned every task into a seemingly insurmountable challenge. I would feel defeated before I even began, and it would zap any motivation I did have. I was holding myself down.

What I really needed in those moments was to accept where I was. I needed to encourage myself to lift myself up. That is what would help me become the person I know I can be.

In order to do that I had to let go of who I used to be. I needed to stop punishing, critiquing or judging myself for my current reality. I needed to accept where I was.

It’s not the expensive supplements, or special gadgets, or one big grandiose moment that are going to help. …it lies in acceptance and the action of caring for myself in all the tiny moments throughout the day. It’s about being kind to myself, slowing tf down and opening myself up to see glimmers during the day, eating healthfully, finding joyful and fun moments, moving my body, getting sunlight, speaking compassionately to myself, acknowledging stress and learning how to flow with it instead of against it.

So now, I have made some changes. To be really honest, I am treating myself like a Tamagotchi (remember those). Am I fed? Hydrated? Did I move for the day? Did I take breaks for fun? Did I get outside? See other people? Did I talk to myself with care? And most importantly did I acknowledge what I was doing to care for myself so I could really feel and soak in the effects?

Obviously not every day is perfect and there is still a long way to go, but trying to add more soul nourishing moments into my day has created more soulful and rich moments. Plus it has made the stress easier to manage.

My guiding light feels like it is slowly growing and becoming more present again. I feel more equipped than ever to move forward, even if it’s sloppy. All those countless, small day to day actions add up. They build momentum and shift my perspective, and with it, shifts my current reality.

And ya know what?

That builds my sense of agency and empowers me to keep going. I feel like I actually have a say in my life again and I feel the slightest bit closer to being the bad bitch I know I am. I feel more confident in my ability to handle the ups and downs. I feel more resilient. And while I know, I am not (and probably won’t ever) be out of the woods. I have a renewed sense of strength and fortitude.

To me, that is the power of acceptance in action. It allows you to say, ‘ok, while I wouldn’t chose to be here and I miss the person I was, this is where I am. And, actually this version of myself is more strong and badass than that past version, which is pretty fucking cool. I can take the values from my past self that I love and combine those with what I want in my future.’

From there, you have all the power to create a new reality, slowly and with care.

This would be fine if going to the doctor was a carefree experience. However, after many, manyyyyy negative interactions with the healthcare system, going to the doctor is NOT a chill time.

Like, I literally have white coat syndrome. My blood pressure is normally low or at the normal 120/80 in daily life. But, even for the doctors I really enjoy, my bp is 150/95 at least even when taken with proper technique.

It used to be ‘oh hah haha’ funny, but it’s getting old.

Why?

Because I get all hot, shaky, and can’t think which can negatively affect my appointments, and the rest of my day tbh.

The doctor office isn’t the only time this happens. I am literallyyyy a Sicilian and German firecracker combo who can get really fired up. Dropping things, running into corners, forgetting things, having to work around a body that doesn’t always cooperate can work me up into a tizzy, especially on days when my bandwidth is already pretty low.

But let’s be real, there is a time and place for being fired up. And, there are times when our body remembers something in the past and becomes activated even though it’s NOT what is actually happening in the moment. Like, I should be able to step into a doctor’s office without my body remembering every traumatic time at the doctor’s and flooding my system with DANGER messages before anything even happens.

You too?

Here is something to try…

Settle and Integrate

Settle and Integrate is a lovely exercise from Laura Khoudari's book called 'Lifting Heavy Things - Healing Trauma One Rep at a Time'. Laura outlines her own journey of using movement to heal personal trauma. Personally, I have found her writing to be accessible and informative and she provides exercises to integrate the concepts she talks about.

Anywayyy I like the settle and integrate exercise because it helps me sloooooowww down. When I am worked up it feels like everything is going a mile a minute and I am disconnected from my body. The breathing cues and physical touch in the exercise put me back in touch with my body, settle my system and gives me the opportunity to calm my mind so I can move forward.

This exercise is one of my favorite exercises from the book (aside from activation exercises - which I have a post on here, so check that out if you are interested) - give it a try if you are looking to relax and reset.

1. In a quiet place, find a comfortable seat on a chair or the floor. Feel yourself being supported by the chair or floor. If you'd like, take a breath, inhaling and exhaling through your nose.

2. Next, you will move through hand-to-body positions, spends 20-30 seconds in each (or however long feels right to you). Close your eyes and with your palms to your face, fingers pointing up, place the heels of your hands on your eyes or cheekbones (whichever you prefer) and let your fingers rest on your forehead. Pause for 20-30 seconds.

3. With your eyes open or closed, cup the center of your forehead with one hand while cradling the back of your head with the other, applying equal amounts of gentle pressure. Let your fingers point in whatever feels natural. Pause for 20-30 seconds.

4. For the next position, bring your hands to your shoulders, either by crossing your arms over your chest and placing hands on opposite shoulders, or by placing each hand on its respective shoulder and lowering your elbows. Apply gentle downward pressure. Pause for 20-30 seconds.

5. Next, bring your hands to your back, near waist if possible and support the back of your body. Pause for 20-30 seconds.

6. Finally, bring one hand to your forehead and the other to the center of your chest, providing support to the front of your body. Pause for 20-30 seconds.

7. End with your hands in an easy position, perhaps prayer, with your chin somewhat tucked. Feel for either your breath on your fingertips or sensations in and around your hands. Thank yourself for taking a moment to provide yourself with support and care.

Once you are finished, explore how you feel with these questions -

Did you like the exercise?

Was it beneficial?

Would you use it again? If so, when?

Keep in mind that it may take a few times to find value in the exercise. Sometimes trying to slow down with something new, like this exercise, when we are that escalated can bring more frustration. If that is the case, it may be worth trying it when you aren’t about to explode. That way you can get a more accurate idea of how this exercise affects you.

As always, if you try the exercise, let me know what you think! Did you like it? How did it make you feel? Did it help calm you?

The first doctor thought it was MS.

The second doctor was sure it was MS.

The third doctor said I couldn’t see, write or walk because I was depressed. While I felt infuriated and invalidated after that appointment, I didn’t feel ashamed because the doctor’s claim was so outrageous and incorrect.

It was the fourth doctor appointment where I was met with the feeling of shame that I still remember to this day. After listening to my story and doing the neurological exams which I performed poorly on, I was told that I ‘look too beautiful to be sick’. It was flippant, like, who cares if your life is in shambles because you still look fine.  The blatant disregard to my reality and making it about looks (of all things) was too much. I couldn’t take care of myself, I took incompletes at school, I was searching for help, and in one quick comment the nightmare I had been living was invalidated and shame rushed in. I wanted to hide in a corner fucking teleport outta that appointment immediately. And, almost 20 years later, I can still clearly remember the office, the sensations my body felt, and how alone and ashamed I felt after the appointment. Thats the power of shame.

SHARED EXPERIENCE

I know I am not alone with experiencing shame, especially when it’s related to the chronic illness I live daily with. Actually, I can say with 99.9999% certainty you have felt shame at some point in your life illness or not. Hell, we are humans navigating a complex world, we ALL experience shame. But, shame is, well, shameful (imagine that), which is why knowing how to navigate it feels like it is cloaked in secrecy.

One thing is for sure - we can’t work with shame if we don’t know what the fuck it is, so let’s dive into that first.

WTF IS SHAME

At its root, shame is a painful and chaotic emotion. It causes the urge to hide or to withdraw from connection as part of a way of coping with feeling unsafe and unworthy of being seen as you are in this moment.

Shame is a tool of suppression and can disorganize how we view our self. Shame can be explicit, like bullying. Or, shame can be implicit, like the look of disgust on someone’s face when they look at you.

WHY SHAME EXISTS

So why is it a thing? Evolutionarily, shame has a use. Wayyyy back in the day when we were hunter/gatherers, the emotion of shame would act as a BIG barrier to any behavior that could get your tribe killed or put in danger because shame creates the sensation that you will be abandoned by your tribe, which would be a threat to your survival.

Again, shame is a tool of suppression that prevents us from being able to trust ourselves in the future so we look to others or keep quiet.

When feelings of shame arise, you may feel an immobilization or freeze response. That freeze response can have a range of emotions connected to it, like anger, sadness or fear. You may experience the urge to hide, withdraw, be secretive or avoidant, partake in negative self talk, or have feelings of humiliation.

In an ideal world, shame is meant to be experienced momentarily and then be followed by safe connection and co-regulation, either by yourself or with others. In this way shame is adaptive.

For example, say as a kid you started to cross the street without looking and your parent yelled at you for doing so, causing you to feel wrong and ashamed. But, when that is followed with your parent calmly explaining why that is not safe and providing comfort, then shame is dispelled and y’all go on your merry way.

However, when feelings of shame are not met with safe connection and co-regulation, the shame can become internalized.  When this happens, it is felt in our body and mind that we are inherently unworthy of love, acceptance and connection. We feel like we are not allowed to exist as we are - something needs to be different for us to be valid in our existence, needs and desires. This shame imprint hits us at our identity and becomes part of our unconscious dictating our perception of ourselves and the world.

Guilt = I did something bad

Shame = I am bad

For example, at that fourth doctor appointment when I felt shame, it was NOT met with safe connection and co-regulation after, which led to internalized feelings of shame around my illness. Was I faking? Was I so broken this expert doctor didn’t even know what to do aside from invalidate me? What does my current experience of being dependent on others to live say about me?

I didn’t understand the gravity of that interaction until years later. While I don’t fault myself, if I knew about internalized shame at the time the after shock of the appointment would have been a lot different.

Reflect -

What does shame feel like in your body?

Do you ever notice when you feel shame you feel compelled to collapse, curl into, or freeze? Maybe you feel flustered, want to escape or lash out at others?

Don’t judge how shame feels in your body, just take note of it. That way when it happens, you can identify it.

HOW SHAME CAN BE EXPERIENCED

I gave the example of a doctor appointment, but there are lots of ways that feelings of shame arise and become internalized.

When you feel shame, there are NOT just the feelings of shame. There are layers to the experience of shame:

• The emotional response that you have to feeling shamed (like fear, confusion, sadness or anger) also exists and binds to the shame

• Feeling shame for even feeling shame at all

• Feelings of shame around how you choose to cope with the shame (or the fact you need a coping mechanism at all)

Basically, shame is complex, layered and DEEP.

WORKING WITH SHAME

Think about it, shame convinces you that you are the problem. It encourages us to hide and it disconnects us from our body and mind. The result is that we feel broken and unsure of ourselves and our experience. Thus we rely on others to tell us how we feel instead of connecting to how we feel.

So how tf are you supposed to work with it?

You have to be kind and compassionate to yourself.

I’m serious. If you think adding more shame around how you feel is going to make you feel safe to work with the shame you are strongly mistaken.

Since shame makes us want to disappear into the ether never to be heard of again, to de-shame you have to acknowledge that you are experiencing shame in the first place. Acknowledging that you are feeling shame is powerful and a BIG step in and of itself, because you can’t work with something if you don’t know it exists. So kudos to you.

Remember how I said that meeting shame with connection and co-regulation can help dispel it? After acknowledging the shame, you have to meet those feelings of shame with safe connection and co-regulation by being kind and compassionate. Doing so normalizes the sensation of shame in your body so you are able to connect with it while gaining control and genuine interest in the experience. Aka you are less uncomfortable (or at least more aware) of when you are feeling ashamed AND you are more trusting/able to see that this IS NOT associated with who you are or your worth as a human and instead is just a passing moment in time.

PRACTICES TO DESHAME

These are two exercises you can try to de-shame and rebuild trust in yourself.

#1 - I BELIEVE YOU

When we feel ashamed we want to run and hide. What would it be like to give yourself safe connection instead?

When you notice feelings of shame, validate yourself by saying ‘I believe you’.

OBSERVE How does that feel to say ‘I believe that right now I am feeling *insert emotion/symptom*’ instead of running away, trying to change it, hide it, or deny it?

Can you observe what that feels like in your body and where you feel it?

What it is like to validate yourself and give attention and awareness to your body and mind without trying to peace out?

Can any of the pleasure of relief be known? Like, it may not feel good per se, but I am validating it, and it feels good to be seen.

Personally, I LOVE using this when I am having an especially rough symptom day because not only am I experiencing the symptom, I am pissed and ashamed that I am experiencing a symptom in the first place. And that just puts me at war with my body. It turns me into the hunter of my own body - determined to find and eliminate the problem. Not to mention the result is me tightening/curling/tensing internally in an effort to brace and defend. But I kid you not, the second I say the statement ‘I believe you. I believe that you are angry and ashamed about experiencing a high symptom day’ my shoulders soften…I go from defense to offense.

That last part is KEY.

Ya gotta go from defense to offense.

Cuz when you are on offense you are on the same team.

You are leading with love, vulnerability and exploration.

You are problem solving from a place of openness and curiosity and SPACE, not one of frantic/panicked/chaotic clouded desperation.

Try it, see what you think. What does making the effort to really believe what your body is telling you feel like in your body?

#2 HOW I REALLY FEEL IS…

This practice is all about radical honesty and the freedom it brings. Using ‘should’ breeds shame….

I should be working right now.

I should be able to workout the way I did last week.

I should have accepted my illness by now.

And the list goes on…

Admitting how you REALLY feel instead of how you SHOULD feel is liberating, healing and empowering.

What if you shifted those statements to ‘How I really feel is…’?

How would that radically honest language open up your world instead of constrict it?

I am really mad that I feel worthless because I am not working right now.

I am grieving the loss of stability. I am longing to know how I will feel consistently.

I am so overcome with emotions when I think about my illness that I don’t know I will ever truly accept it.

Being radically honest gets rid of the shame by bringing your true feelings to light. It also puts you in synergy with your thoughts and actions vs being at odds with them. Again, it is acknowledging your true feelings which builds trust in yourself because you are not ‘shoulding’ how you feel. You are being radically honest with yourself by reinforcing the idea that you DO know how you feel and you are dismantling shame as you go. More kudos to you!

Give it a try and let me know if ya like it!

LOVE YA

We are all in this together and we can provide each other support through hard times. Being in community and sharing our experiences is a great way to shine light on the common experience of shame and learn and connect with others. If you have any thoughts on shame or try any of the exercises please drop a comment, I would love to hear about it! 🧡

Whenever two (or more) people actively choose to come together and support each other through this thing called life, things are gonna be difficult at times (and also super rewarding). That is the beauty of human connection.

Butttttt, then you add in a chronic illness, and well shit, things just got more complicated.

Here’s the thing tho…we ALL bring things to a relationship - illnesses, kids, humor, debt, family drama, smiles, love,  etc etc etc.

Everyone brings something, even if they would prefer not to. The key is finding someone who is committed to being a team and who is willing to grow and evolve with you.

You are more than your illness and the right person will not make you feel ashamed or guilty for being sick.*

*Let me interject one thing right here…IN NO WAY DO YOU WANT SOMEONE IN YOUR LIFE THAT IS NOT SUPPORTIVE. Sure, Aunt Karen you see once a year is fine. But a partner in daily life? NO.

Ok so, relationships are hard. Relationships with a chronic illness are gonna be a bit more hard.

Howeverrrr, we are used to things, like relationships specifically, being harder with an illnesss AND we know there is a way to find balance and joy still.

Below are tips for doing just that…

TIPS GALORE

Some background first - I’ve had MS for 19+ years (aka half my life). I started dating my now husband 6 months after I was diagnosed. I chose to disclose MS immediately. We have lived through multiple degrees, building a house, sick parents, and literally any other stress a ‘typical’ Millennial has existed through (so like all of it, aside from having children, but FWIW we have an 18 yr old needy cat that is spoiled rotten). There have been happy years, hard years and everything in between. Through it all I/we have learned some serious lessons.

Without further ado and in no particular order…

You are a team

You have to be (and stay) a team. Your love for each other started for a reason, what was it? What do you truly value in your partner? Remember that when emotions runeth over. Above all, treat each other with respect. You are with each other not against each other. Always.

This is extremely simplified, but chronic illness or not, problems will come and go in relationships. At the end of the day, you each have to consciously decide if y’all are going to go at life together or not.

While it is obviously not as simple as ‘oh we are committed so we will stay together’, commitment from each person is mandatory to even have a chance. From that strong foundation, you can go very far together.

Communication Matters

We all know communication is important so I am not gonna go into that. What I will share are the specific insights that I have found pertinent to chronically ill-relationship-life:

• Communicate your needs, feelings, limitations, etc openly, honestly and with respect by using ‘I’ statements to describe your experience.

• Disagreements occur. First, regulate your own emotions and body. Then, when your partner is ready, talk about it calmly. Use disagreements as a time to share + come together over the emotions instead of letting feelings of frustration, resentment or guilt pull you apart. This does require patience, being regulated yourself and setting your ego (and your defense) down. But, once you get past that, it is simple to actively listen to understand NOT to respond.

• Acknowledge and/or validate what the person says before responding or reacting to it. Think about it, if you share something important, how good would it feel for your partner to repeat and confirm what they heard before responding?

• Get a phrase. One thing my partner and I have is a statement to say when things get heated - ‘I am on your team’. This speaks to us and reminds us that we are on the same side.

• Meet weekly. Glamorous? No. Game changer? Yes. Use that time to reflect on the past week (What went well? Where could we make edits?), reflect on how we each feel (mentally, physically, emotionally, with each other) and go through our schedule for that week. This gets us on the same page and sets a nice underlying tone of teamwork. And it prevents relationship issues from growing out of control.

• Make it a habit to address strain before it explodes. We do our best to always prioritize our love for each other and talk about things before it gets out of hand. No one is perfect, but we are doing our best. Finances, social life, housework, are just some of the things that become more complicated with chronic illness. That is not to say it is not manageable, it is. However, it requires trial and error, team work and creative solutions.

Little things are big things

When you are in a relationship especially one that is years upon years long, little things become big things. So take advantage of it - do little things consistently to remind your partner that you are on the same team. It doesn’t have to be a big thing - leave a little note, send them a selfie when they are away, buy their favorite snack, put down electronics when together, acknowledge them and thank them.

The same things that make relationships flourish and last in ‘normal’ relationships works for chronically ill relationships after all. Be thoughtful, make them laugh, show ways you care. It will go a long way.

The grieving process

Illness affects each of you differently and both are 100% valid.

The person with the illness may be in a whole different part of the grieving process compared to the person without the illness. It is crucial to come together, hold space for each other and communicate authentically and vulnerably how you are each feeling. Do not take it out on each other. See it as an opportunity to build intimacy and further strengthen your relationship instead.

Don’t forget about yourself

Each of you must prioritize your own self care because you can’t show up for each other if you don’t show up for yourself first.

Alsoooo it is okay if your self-care needs are different than your partner’s. Your goal is not to be the same person, it is to support each other in becoming their best self.

Maybe your partner is an extrovert and needs more social time, but you want to stay in. That’s cool - you don’t and literally can’t be everything to each other, but you can support your partner in living out their extroverted dreams!

Discuss your needs openly

We are all adults and have needs. If you have a chronic illness, you probably have some specific ones for that illness. When you feel the time is right, educate your partner on your condition, symptoms and how they impact your life. Remember, chronic illness doesn’t take away our choices, it just changes the choices you have. At times, it may require y’all to get creative and adapt. Y’all can use that as team building time or have it be a wedge in your relationship - the choice is yours.

BTW if you’re the partner without an illness, you likely still have non-negotiables that come up too…share ‘em because YOUR NEEDS MATTER too. One person does not have it worse than the other - it is just different. You all agreed to come together as a team and tackle life together. You can’t do that if you set your needs aside.

Personal time - TBH My partner isn’t one to share his needs and while his intentions are good (to minimize my stress), it actually pisses me off in more ways than one. First, I literally always have a need + for him barely to have any makes me feel burdensome (even though he doesn’t intend to make me feel that way). When he does share, I find that it’s actually validating to know that he has needs and needs help too. Second, I want to help. It turns out I like my partner (surprise!) and I like helping him. By him vocalizing his needs it gives me the opportunity to show him that I care. And, it allows him to feel cared for! Third, suppressing needs just builds resentment that comes out in other ways. No one is a mind reader so sharing prevents future issues. Win - Win - Win

So like I said before, both of y’all need to share your needs with each other (and obviously do it without shaming, blaming or putting the other person down).

Accept + Adapt vs Dwell

The only constant in life is change. Literally everything changes. Our job as humans on this planet, is to acknowledge our reality (even if we don’t like it), accept it, focus on what we can control and adapt so we can live. This holds true in relationships too. Each person’s capacity and ability will change. When this happens, come together as a team and figure out each person’s strengths and weaknesses and use that knowledge to your advantage.

For example, for weekly meals I used to plan, shop and cook everything. But now, that is too much. Since I am organized and like to cook, I own the planning and the cooking part. My partner handles the shopping and helps with cooking as needed. That way it can all still get done in a way that works for us, even if it is different than the past.

Explore different types of intimacy

This is a place for you to explore ways to have fun with your partner. Sex is great AND there is more to intimacy - hold hands, create a safe space, have fun, let loose. Whatever it is, plan intentional time together. Honeymoon phases end and life will get in the way.

Don’t let it.

Plan play dates, pleasure time, goofy time, all the things. Make forts (yes seriously), do puzzles, listen to music, dance, sit in the sunshine and dream together, do it all (as long as it makes you both happy).

Set realistic expectations

Your partner is not meant to fill every single need you have. Make sure to build a life outside of your relationship. Find community outside of them. This can be harder if you are chronically ill, but it is so so so necessary to each have your own interests, passions, friends and life.

Seek support together

Bonus points if you do it before you need to do it. :)

Finding other couples going through similar experiences can be life changing. This can be especially true for the person that is NOT chronically ill, since they are not as likely to be plugged into virtual chronic illness communities.

Couples therapy can also be an option because it provides dedicated time for you and your partner to discuss your relationship together in a safe setting.*

*On this note, relationships do indeed take two people. Both parties need to be willing to partake in therapy. If your partner isn’t on board with your chronic illness or seeking support for the relationship, it may actually be a blessing in disguise. I hate using that term, but letting go of people that are NOT on board is *actually* saving you a shit load of trauma and hell so be sad about it not working out, but move on. Eventually you will see you dodged a bullet (sorry, but no support is better than negative support)..

Respect boundaries

It is critical to chat with your partner around your own personal boundaries regarding communication, needs, etc. Make sure to revisit this conversation to make sure y’all are still aligned too.

That said, the boundaries conversation extends further when one (or both) of you are chronically ill. Other things you may want to touch base on include: what personal care tasks your partner will or will not do, if they should attend doctor appointments and what their role is in your medical care etc. just so you are all on the same page.

Check in with your partner

Hopefully this is kind of obvious, but you don’t know how your partner really is without asking. We aren’t mind readers here.

If you are the chronically ill one, you can ask your partner how they are doing (I know, novel concept right?). They may not be the best at saying how they feel out of the blue, but prompting them can help them tune into how they are feeling and shows that you care. Encouraging them to take time for themselves is important too.

Caregiver burnout is very real and checking in can make a world of difference. And, just to be clear, when I say caregiver - I mean in ANY way. If you are in a relationship you are your partner’s support person, meaning you are a caregiver whether or not the person is chronically ill IMO.

Anyway, knowing the signs for caregiver burnout is important. They include: withdrawing from friends/family, getting sick more often, being more irritable or sad, wanting to hurt yourself or the person you are caring for, experiencing changes in sleep and/or emotional or physical exhaustion. If that is the case, encourage your partner to get help.

Your words matter

Language, language, language - You undoubtedly spend a lot of time with your partner. The language you use and what you all talk about can make or break your relationship.

Here are just two examples:

• Complaining - sure complaining is part of life, doing it endlessly is less so. Do you really need the worst of everything to be brought to your attention? A complaint is like a paper cut and being around complainers all day is like death by a thousand paper cuts. It can totally skew your perspective of yourself, your partner, your health and the world. So watch it!

• Humor - Let’s face it chronic illness life sucks sometimes. Laughter can make it suck less, so use humor to your advantage. Personally, I love some dark humor. Regardless of what you enjoy, find ways to infuse humor (and fun) into your language and day to day life together.

1. Story time - lately I have been feeling like a pessimistic Patty, way more than normal and to the point it is dampening my mood. I started listening to podcasts with comedians during the day to lighten my world and it definitely helped. Plus it ensured I was in a fun and more playful, joking mood when my partner and I interacted. I am not saying to go listen to podcasts, but find something that is gonna brighten your day and put a smile on your face and do more of it.

Don’t compare to others or the past

Do NOT compare what you see on social media (or even in real life) to your relationship. You have no idea what happens behind closed doors. That is comparing apples to oranges. They aren’t the same and never will be.

Instead ask yourself this: Does your relationship work for you? Align with what you want for your life? What you want in a partner? Are you happy?

Do NOT compare the past to the present. Reminiscing happily is fine, but doing it in a way that gets you both caught up in grief and taking it out on each other that things are not the same is not. Accept that the past is the past, the future hasn’t happened and the present moment is all we have.

Want the future to look different?

Cool, do something different in the present moment. :)

Did I leave anything out?

Relationships are hard and take conscious effort and work. They all differ too, what works for some, may not work for others and vice versa. There are so many nuances and experiences in relationships I feel like even after this big ass list I undoubtedly left some tips out.

So, if you have any thing you learned from being in a relationship (friendship, romantic relationship, etc) as a chronically ill person share it below! And, caregivers, too, please share your insights!

The more we can all learn and grow together 🧡

Why is this such a ground breaking statement?

Because moving has been a bitch lately (and that’s me saying it nicely).

How did I get here?

The Setback

Let’s go back in time three months to the end of October, my strength training and walking routines went out the window due to numerous health problems coupled with an excessive amount of stress related to attempting to obtain the treatment for said health problems.

With MS I have become accustomed to curveballs and needing to shift my movement practice in return, but this was too much of a change; too fast.

All of a sudden my tried and true activities would leave me sore and feeling sick for a day or two after.  It felt like my mind and my muscles were living on different planets. My head was clouded with emotions and I could not for the life of me figure out how to alter my movement practice to fit my current capacity.

I was at a standstill. The lapse in moving regularly hit my ailing body hard. My muscular strength and cardiovascular endurance tanked. And let’s not even talk about how sketchy things got mentally and emotionally because without a regular movement practice I am known to turn into a very feisty Sicilian firecracker aka reallllll bitchy.

I longed for a way to move and connect with my body again, but that seemed like eons away from my current state. My muscles felt like jello, weak and floppy. My body was heavy like concrete. Even if my brain does send signals to my muscles successfully, they are unstable, which means that I have to think, like reallllllyyyyy think about it every time I move. This makes movement SO much harder physically AND zaps you mentally too.

For example, grabbing a cup, I am consciously thinking…

‘pick up arm’

‘reach arm out’

‘ok there is the cup’

‘now close your fingers around it’

‘whoops too much’

‘loosen a bit’

‘ok keep the grip in your hand and lift up’

‘good, now keep it level as you lift your leg to take a step’

‘ plant your foot on the ground’

‘ok, good, now lift the other leg up to take a step’

‘whoa, make sure you keep the cup level’

Like WHEWWWW it’s no surprise fatigue is an issue right?!?!

MOTIVATION

When you are knee deep in thickkkkkk grief, and are having trouble holding a cup level while walking, it is really hard, if not near impossible to want to workout.

Forget the workout…what I actually want is to feel more connected to my body, have more body awareness, and re-establish trust in my self.

My foundation was shaken. The anger, sadness and hopelessness of my current sitch was overwhelming me.

But, unfortunately wishing and hoping only take you so far ;) In order to get what I want I had to get out of my own way. I had to grieve the change and accept my current capacity. And, I had to pair acceptance with action, because taking mindful + intentional action is how I can rebuild my health.

STARTING TO MOVE AGAIN

Since there is such an obvious disconnect between my mind and my muscles, slow, controlled and intentional movement is ideal. Because, the best way to strengthen the neural pathways between your mind and your muscles is by concentrating on how your muscles engage as you move through an exercise. This reinforces that mind-muscle connection and builds a strong foundation, which is exactly what I (and so many of us) need to move effectively throughout the day.

Enter DK and Movement Remedies…

It was indeed her amazing Seated Pilates Class that I just finished before writing this.

I met DK through the Chronic Boss Collective. Her movement philosophy is on point. Her studio, Movement Remedies, is all about accessible Pilates that will leave you feeling good. It’s designed to help you move safely in the face of chronic pain and to feel empowered while doing it.

DK lives with chronic pain and is no stranger to not feeling confident moving in their body. She gets it.

Movement Remedies (and DK) is based in Edinburgh, BUT class is virtual so I (and you!) can reap the benefits of moving with intention anywhere in the world. Class takes place on Mondays at 1pm est and is 12 GBP or about $15 depending on the day. :)

Why was class so great?

First - Class is 40 minutes and full of slow, controlled, focused movement that requires minimal equipment (a chair and light weights or 2 cans or water bottles). Let me tell you something about a 40 minute time frame…it’s literally perfect, not too long or too short. DK even has a blog about it here.

Second - DK is an empowering breath of fresh air and her cues ensure that my form is on point (or as on point as possible for a baby deer like myself). Her style is rooted in science and is full of empathy and compassion (a win - win - win if you ask me).

Third - DK makes it accessible by giving a variety of options and throws in great one-liners throughout class to remind you that it’s not a competition and help you feel empowered along YOUR journey. And, the focus on mindful movement keeps ya plenty busy for the class to fly by.

Fourth - It was a welcome challenge. If you think seated = easy, you are wrong. You can choose options to amp up your class, or not. It’s all up to you. Either way, the environment is chill and paired with encouragement from DK.

After Class

After class I felt a solid sense of accomplishment knowing that I reached my goal of moving intentionally today. And, I am feeling a hell of a lot more empowered to continue to show up for my self ( and my movement practice) tomorrow.

Moving intentionally is challenging work that can be extremely rewarding with consistent practice and I’m excited to see where this road leads, even if there are some twists and turns along the way.

One thing is for sure, I am officially hooked and I have a strong feeling that Seated Pilates on Mondays at 1pm will be part of my weekly routine.

WBU? Wanna join?

If you’re looking to add intentional movement to your weekly schedule DK’s seated Pilates is it.

Sign up here if you want a designated time to move together - c’mon let’s be #accountabilibuddies!

Every time I say the same thing while laughing - ‘no it’s not, but y’all make me nervous.’

It gets a chuckle usually, but it is true. I have had my fair share of challenging appointments over the last 18+ years with MS. And I don’t mean challenging like it’s hard to decide on a med, I mean challenging like reading ‘patient says they are in pain but they look beautiful today’ in my chart when I was 20. I mean challenging like going to a new doctor after 15 years of navigating MS and being told I need to see a psychiatrist because there is no way what I am experiencing is MS progression. They insisted that the physical decline I experienced was stress. (Spoiler alert: it was MS progression, not stress, and I no longer see that doctor.)

HEALTHCARE AS A WHOLE

To be clear in NO way do I think doctors are out to get people. I know a lot of them personally and I know how tirelessly they work. I see them showing up every day trying to make a difference in a horrifically broken system. They have an immense amount of work that takes them away from patient care and over burdens them with things to do. They are stuck in the (sometimes) crappy healthcare system just like you.

Doctors are people and have bad days too. Their kids get sick, family members pass away, they are overloaded with stupid adult admin shit too. And of course there are bad eggs too. I am not ignorant.

This is not meant to be an excuse. It’s just no one is perfect, no matter how much you want them to be - including your doctor.

APPOINTMENT PREP

There are definitely steps you can take so you can walk in that room confident in your experience and as prepared as possible. This ensures no time is wasted in the appointment. It allows you to be present and (slightly) more calm because your ducks are in a row.

While you can’t prepare for everything that happens in a doctor appointment, doing what you can to prepare, being respectful, listening, asking questions and having clear communication goes a long way.

SETTING THE STAGE

In general, as the patient, you are the expert in your experience and your body. Your role is to share your concerns, provide as much info as possible and advocate for yourself as needed.

The doctor is the expert of the human body, systems and illness AS A WHOLE from a detailed, clinical perspective that is rooted in experience and education. They are the expert clinically.

Think about it…your perspective and what you are bringing to the appointment is based in your experience as an individual. Your doctor is bringing the perspective and knowledge of ALL the patients they see plus their clinical education. One is not more valid than the other. The goal is to honor the validity in both the patient’s and the doctor’s experience and merge them so your care is so fucking good you don’t stress at the appointment at all.

HOW TO PREP

The list of things you could do before an appointment is long, but I will put stars by the most important things for your doctor. There will be hearts by the most important things to do to take care of yourself. That way you can pick and choose based on your own situation.

Before the Appointment

To help your doctor:

✨ Make sure all your records and the dr you are being referred to has access to all those things prior to the appointment so they can review if needed

✨ Bring or KNOW FOR SURE every single supplement, vitamins, herb, and medicines you take including the dosage and frequency.

If you’re waiting for a specialist appointment: follow up on referral. You can confirm with your dr the referral was sent. You can call the office that the referral was sent to to make sure they received it. Ask them when you can expect to be followed up with. If that day passes and you don’t hear from them, follow up with them. The healthcare system is busy and the squeaky BUT POLITE wheel gets the grease.

To help you:

🧡 Figure out logistics - how long it will take to get there, how early you need to be, parking, accessibility, forms to complete, etc.

🧡 Think about if you want to bring someone with you. This can be helpful to further back up your statements (like what symptoms you are experiencing and how they affect your life). Having a witness adds credibility and they can help you remember things or offer support during the appointment too.

Keep an eye on your mindset and stress levels leading up to the meeting. Try to focus on things you can control vs uncontrollables. Just prep and rest assured that’s all you can do. Remind yourself that if this dr doesn’t work out, yes, it will suck, but there are plenty more to try.

🧡 ✨ Track your symptoms - gain as much knowledge about your symptoms as possible like what they are, when they occur and how often, how long they last, their intensity, triggers, how long it takes to recover and their impact. The blog article and symptom tracker HERE will teach ya everything you need to know about tracking + looking for patterns.

Prepare yourself so you do NOT downplay your symptoms in the appt (also don’t over exaggerate where it doesnt sound believeable just to show how bad they are to get your point across). Be honest in how much these are affecting your life  and how it has caused your life to change. Give TANGIBLE examples. For example, I used to workout for 45 mins 4 times a week doing strength training and now I can only get through 20 mins once per week because when I am more active my body gets weak - that gives them numbers (aka quantitative info) which is easier to grasp for everyone.

🧡 ✨Do a brain dump and write out any questions or concerns you have. Then go back through and list in order of priority. We all know time is limited in appointments (which is not the doctor’s fault btw, it’s the healthcare system). Come with your top 3 concerns and keep your other questions just in case there is time for more!

🧡 ✨ Write out a timeline of your health. I am talking HIGH LEVEL. Think like a one pager resume almost. The point is so the doctor doesn’t need to spread precious time to read through records. Things to note include when symptoms started and what they were, diagnosis dates, medicine or therapy start and end dates, and lab/test dates and results. This can also be helpful in keeping dates and info straight for you in the appointment too!

During the Appointment

You are allowed to NICELY and respectfully grill them about what they think is happening. If they are dismissing you, restate how it is impacting your life and that you can not continue living like this. Inserting tangible examples like ‘I used to be able to work for 8 hours a day, but now I can only work for max of 2 hours every day. So, I won’t be able to afford rent. This is clearly having a huge impact on my quality of life.’ State the facts and the result and ask what action they suggest we take to get to the bottom of it.

Defensiveness from either party is not going to help obviously. Since all you can control is you, focus on responding instead of reacting. I know it is hard because emotions may be high, but ya know how if someone yells at you or is shitty to you you don’t want to help them? Be kind but FIRM - you’ll get further. You know from my content that I love a swear word or two. But, you best believe those aren’t being used AT people, ESPECIALLY my healthcare team. Unfortunately, doctors are not magicians. Some problems can not be fixed (helllloooo chronic illness). Sometimes the choices are between shitty option #1 and shittier option #2 and it is important to not get pissed at the messenger (the doctor).

That said, sometimes the solutions (or lack of) is not the issue. While it’s not ideal that you have to be prepared to advocate for yourself when you are sick, sometime you will need to. If there appears to be a misunderstanding or you don’t feel listened to, try restating it.

• This symptom is impacting my life in ___this way. What do you suggest we do to fix this? What do I do if it worsens?

You can also ask additional questions.

• Is there no test or therapy that would be helpful?

• What’s the differential diagnosis? 

If they deny a test AND there is justification that the test/lab in question should be run, ask the doctor to document in your chart that they are declining to do the test or lab. This puts the responsibility on them. *To be clear this is not a way to bully your doctors into running unnecessary tests. That said, this is a way to navigate having your legitimate concerns dismissed.

REMINDER

There are lots of things that are outside of our control that influence how an appointment goes - the shamefully high prevalence of medical bias, racism and gaslighting, the broken ass healthcare system are just an few examples.

We also can’t control other people, how they respond to stressors or how they choose to show respect or communicate.

But, again we can choose to focus on what we can control - ourselves. We can show up as prepared as possible. We can respond instead of react. We can move the fuck on if the provider is not the one.

SUPER IMPORTANT NOTE: You and your provider are on the same team. If you don’t like your team mate, find a new one. It sucks to do it, but it’s necessary sometimes. Not everyone is a good fit and that’s okay.

Remember, it may not always feel like it but you have options. You always have options.

TO CLOSE

When you’re chronically ill doctor appointments are like everything else - doable but more complicated. These steps will make the entire process of seeing the doctor more organized and less overwhelming 🧡

What do you think? Do you prep for appointments? Are there any additional steps you do before seeing the doctor?

Share it all in the comments :)

If so, what do you do? Modify right away without hesitation? Begrudgingly do the modifications your body (+ mind) need? Try to power through?

Personally, I’ve done it all - I’ve modified right away. I’ve bitched, moaned and ultimately adjusted to what my body needed. And I have vast experience in powering through as well.

Anddd, let me tell you I have some insight (and a story) to share.

Setting the stage

Last week I was up late working on new designs for The LIFT Shop. By this point I had already put in countless hours on creating new designs - fueled by excitement and a desire to create badass merch that resonates with all the chronically badass folks. I would have an idea, start bringing it to life, then another thought for a new design would come up. Ultimately, I was having so much fun doing it, I didn’t realize how many options I had created - it was A LOT.

After the initial excitement wore off I was thinking ‘Sam, why do you do this to yourself? Why do you do the most regardless of what else you have going on?’ Before I knew it I was stressing about how to finish and release them all. 🤦🏻‍♀️

Once I became aware of the stress it was creating, I tried powering through - maybe the designs would naturally get whittled down the more I worked on them?

Nope. Sure didn’t. Of course a few went back to the drawing board, but I still had too many options on my plate.

Lesson learned

So I did what I perhaps should have done immediately - I modified right away.

I reflected on my creations and noticed that they naturally fall into themes. Just like that the modification I was going to take popped into my head - release a theme or two at a time. Duh.

Sometimes you just need to recognize the issue, accept that it is indeed an issue no matter how much you don’t want it to be, and figure out a way to work with it (or around it).

Insight

Dwelling gets you no where. Denial definitely doesn’t help.

Becoming aware of your experience, accepting it (even if you hate it) and adjusting will take you further than dwelling and denial will any day of the week. If you do nothing else today, please, please remember this. 🧡

Do you ever overshoot what you have the bandwidth for? What do you do when that happens?

Drumroll please

Alsooooo it didn’t feel right to mention new designs but not give a sneak peak so here they are…

This one speaks to how we all feel sometimes…

I’m pretty sure this image sums up living with chronic illness perfectly…

Nothing like beautiful flowers to remind you that you can’t have the good without the not-so-good…

On that note - I know y’all will agree with this nature appreciation tee…

And last but not least the best advice anyone could give…

What do you think? Let me know in the comments…

Oh - btw they come in more colors than what you see here.

Stay tuned for the release date! 🧡

You know the times I am talking about - when you’re too exhausted to heat up leftovers for dinner so you don’t eat. When your body feels like a thousand pounds and the last thing you want to do is fucking get up and brush your teeth. When your alarm goes off and your first thought is ‘ugh another day’.

A little bit about me…

I’ve been having a lot of those days lately. I find myself often thinking ‘tomorrow will be better…it has to be’.

To be completely honest, this funky season of life requires patience and perseverance that I struggle to have at times. I’m tired. I’m sick of navigating healthcare while feeling like ass. I am over having to call insurance companies, patient assistance programs, infusions clinics and doctor offices to make sure my name doesn’t get lost in the shuffle. I don’t want to get out my credit card to pay another copay. And I swear, it feels like if I have one more day where I stare out into the void too mentally, emotionally and physically exhausted to function I am going to explode from anger or collapse from sadness or maybe both.

I feel that way despite the fact that this isn’t my first rodeo. Almost 2 decades and 10 DMTs for MS in, I know the rollercoaster of bs that chronic illness can bring, but, for whatever reason this time is pushing me.

What it’s like

Days/weeks/months/years can become beyond difficult because your physical and mental health suffers all while not knowing when it will turn around. It can feel like you see yourself slipping away.

Unfortunately (and fortunately), I know I am not alone in going through rough times. So there is that bright spot ✨🧡

Preventing (or minimizing) the snowball effect

Not sure about you, but when I physically or mentally feel like shit, my thoughts, perspective and how I take care of myself all goes to shit too - cuz why not, right? 🫠 This makes it VERY hard to do anything for myself, mentally or physically that will help improve how I feel. It can VERY easily snowball into a much larger issue.

The thing is, when you are in this type of funk, you’re not going to wake up one day and feel amazing and all your problems have magically disappeared. But, that doesn’t mean it’s a hopeless situation.

The solution

You have options - you can work to get through it or chose to get used to the dark place you don’t want to stay in (sorry, tough love).

Working through it may feel daunting, especially if your motivation to do so comes and goes (or is non existent). So here’s what we are gonna do…

We are going to create routines around the non-negotiable things you need to do every day to feel your best. That way you have these routines in place that allow you to stick to behaviors that will help you get out of that funk, instead of doing things that keep you in it.

Step one: Reflect

The behaviors you choose are up to you. That said you may not even be aware of what does help you feel better each day. That is totally cool. Now is the perfect time to start learning what those are…

Think about what helps you feel more grounded? Less stressed? Relaxed? More connected to the world around you? More in tune with your body and mind? Keeps you functioning as best as possible?

You don’t need to come up with a massive list - if you come up with one thing, thats great. Five things? Also great. All that matters is that they are YOUR personal non-negotiables and that they are realistic.

The things on my list are behaviors that tend to that fall by the wayside when I am in a slump. Not only does that negatively affect how I mentally and physically feel, it squashes any motivation I have to get out of said slump.

Step two: List your non-negotiables

Keeping the goal in mind of working through a rough patch as best as possible, think of the non-negotiable things that you would benefit from.

Go write them out (or type) them, it helps to visually see your list.

Here’s an example of mine:

• Connecting to my body through movement daily (ideally 15+ mins long)

• Staying hydrated throughout the day

• Brushing my teeth and putting on clothes that are not my PJs even if I will be in the house all day

• Having at least 20 mins sitting with Lilly (my nurse/cat)

• Go to sleep by 11pm and wake up by 8am

• Getting outside for at least 10 mins daily

• On my heavy computer time days, take hourly 5 min breaks to look away from the screen and walk around the house

Step three: Create routines

Once you have your own list, add detailed steps of how you are going to make it a routine. This is great because often when I am in one of those funks, I am really good at overthinking things to death to the point where I don’t do anything. This way, I can just do the thing it - kinda like being on autopilot.

Here’s an example of a few of my non-negotiables broken down into steps so I don’t need to think about it.

My Non-Negotiables

• Connecting to my body through movement daily (ideally 15+ mins long)

  • I put my shoes by the front door with socks in them. That way I can just go into autopilot, put them on and walk outside vs. having to think about gathering everything, which is usually when I come up with an excuse of why I shouldn’t do the activity.

  • I look through my weekday schedule and scheduled time to take movement breaks each day. That time is non-negotiable. It doesn’t matter what the movement I’m doing is, what matters is that it happens.

• Brushing my teeth, washing my face and putting on clothes that are not my PJs even if I will be in the house all day

  • After eating breakfast I sit and organize my day. Instead of procrastinating or scrolling which negatively affects my morning, I get up and brush my teeth. That kickstarts my brain into ‘start the day time’.

  • Putting on fresh clothes and washing my face signifies a fresh start to me which helps me approach the day with a little more pep in my step vs dragging my way through life.

• Getting outside for at least 10 mins daily

  • In the early evening I walk around the garden and water the plants (if needed) for at least 10 minutes. If I am putting off doing this non-negotiable, I visualize how nice and peaceful it is out there while I sit on the couch. Or, I look through recent pictures from the garden. When I am doing those things, I really feel the emotions of happiness and wonder that arise when I am outside. That makes me crave that experience in real life, which propels me into action and actually go outside!

• On my heavy computer time days, take hourly 5 min breaks to look away from the screen and walk around

  • I set an alarm on my phone on the hour and will take 5 minutes to either grab a snack, grab food for the cat, switch laundry, grab a different book to read, or do anything else that just gets me away from a screen for 5 minutes.

I mentioned above the point of creating a routine around your non-negotiables is to make it easy and straightforward to continue to do them, even when you don’t want to, because you know in the end you will feel better after they are done. That way you aren’t relying on motivation to feel better. This part does require discipline, because you won’t always want to do them.

What does discipline really mean?

On the note of discipline…Discipline does not mean to grin and bear it. It means that you have your non-negotiables and you also…

• Pay attention to and listen to your body. If you know deep down that you need to truly rest in order to play the long game, then do it. And if it is a rest day, make it a REST day. Be compassionate with yourself, remind yourself you are doing what you need and that rest is productive.

• Hold yourself accountable to stick to behaviors that you know will leave you feeling better. Only YOU know if you are making an excuse (we all do it) or if you truly need a break. You have to call yourself out on your own bs, no one else will.

  • If you aren’t sure if you are in need of a break or making an excuse, then do some trial and error to figure it out. If it seems like you may benefit from half doing the behavior (ex. doing a lighter movement session then intended), then be flexible and adjust. Showing up is all that matters, it’s what helps ingrain the behavior into a habit. Something is better than nothing - always.

Staying consistent

In addition to discipline, consistency is critical in building new habits. Consistency may sound daunting initially, but remember it doesn’t mean all or nothing. Quite the opposite actually - consistency is about showing up regularly (not always!). It’s about showing yourself that you can keep a promise to yourself and that you give af about yourself.

Seeing benefit from doing behaviors consistently will empower you like nothing else because it shows you that putting in steady effort can shift how you feel for the better. It puts more power back into your hands, which is crucial, especially when you are feeling down and over the constant challenges.

The more you do it, the more your confidence will grow, which makes it easier to keep doing it. Plus that confidence bleeds out into other areas of life and positively benefiting your life as a whole too.

To recap

It may sound like a pie in the sky dream right now and that is okay. The important part is to figure out your non-negotiables, outline steps to turn them into a routine and build discipline (and compassion) and consistency.

Let’s get real

At the end of the day it sucks, like really reallllllly sucks to be stuck in what seems like an endless tunnel of despair. You can have amazing people help, support and encourage you, but they can’t get you out of the tunnel.

It’s on you.

While perhaps overwhelming, the good news is you just need to focus on yourself and do your non-negotiable behaviors that help you live a happier and healthier life.

Start there.

And please don’t overcomplicate this - you can start with one non-negotiable behavior every other day. Then slowly add. I don’t care where you start, and you shouldn’t either. The goal is to create sustainable change and that takes time. So start wherever it makes sense for YOU.

Final Note

I’m not an idiot though and I know that saying you ‘just need to focus on you’ isn’t as easy as it sounds.

To be honest, some days I am in such a crabapple mood, I dont want better for myself. I could give a shit quite frankly.

Here’s the deal tho - it’s those times where it is up to you to reflect on what you are choosing and why.

You know how you will feel if you continue spiraling - do you want that?

Or do you want to try for a new feeling? New can be scary, but new can be refreshing too. And just maybe with consistency it won’t feel new or scary!?!? And who knows you may even like it?!?!

Remember - the time will pass regardless.

What do you have to lose?

Happy non-negotiable list making and routine creating 🙌🏼

Naturally, when I was diagnosed with MS I tried to make it appear perfect. Mostly because I didn’t want to appear like I couldn’t ’handle it’ AND I didn’t want to be burdensome for others.

In the early days I chose to hide, ignore and fight against symptoms. And, you know those emotions that are always bubbling right below the surface? I stuffed those babies down deep. Ya know, as one does when they are trying to make a very imperfect situation appear like it is all rainbows and butterflies.

Like anyone else who has ever done that, I got worn out.

That was years ago. Now, in order to preserve my own well being and to live authentically I stopped putting on the perfect show and I stopped expecting things to be perfect.

Dropping expectations works for sure, but every now and then life seems to come together in an exceptionally gigantic it’s so-fucked-it’s-laughable mess of imperfection.

You may know I am in the process of switching to Briumvi. The transition has been full of administrative delays and communication misses between hospitals and insurance resulting in a lapse in treatment. This is causing symptoms to increase significantly.

It’s a literal sh*tstorm of imperfect situations - all expectations have gone awry.

You know those times when it’s such a mess you just laugh? Then cry? Then laugh? Then get pissed? Around and around again?

That’s me right now.

While I am annoyed that things went THIS astray, there are reminders I tell myself that help big time.

If you happen to be in an imperfect mess too, test them out the next time you catch yourself striving for unattainable perfection.

REMINDERS ABOUT Expectations + PERFECTION

First, friendly reminder that expectations do not change the outcome. You can prepare for different outcomes but expecting or assuming that that outcome will happen is a recipe for disappointment (and a waste of time and energy). If you could think your way perfect, my life would be very different (and I’m sure yours would be too).

Second, remember that fighting for control is and always will be a winner-less battle. Instead of fighting, which doesn’t work, try the opposite - acceptance. When you choose to meet any situation - positive or not - with acceptance it frees up brain space. Instead of getting stuck in the cycle of dwelling on why, the fairness of it all, or ignoring it completely, you are saying ‘ok, this is happening, what do I need to take care of myself right now’. Then you can shift into action by getting to know your body + mind, your needs and boundaries. The more you learn, the easier it will be to know what you need in the moment so you can ride the wave as best you can.

Third, remember to speak kindly and compassionately to yourself always, especially when snafus arise. Let’s be real for a sec - we actually need the ups and downs because that is how we know what balance is. Think about it - if you didn’t know hard times, how would you know what easy or the middle ground even is?

Instead of beating yourself up that you’re having a hard time, know that it is completely normal to have difficult periods. Try speaking to yourself like you are your own personal cheerleader - say what you need to encourage, support and empower yourself. It may feel weird at first (or it did for me at least). Just keep testing out different ways to coach yourself and you’ll find the right motivating yet firm tone and sense of humor that works for you.

You don’t need others to amp yourself up, they don’t know how to do it best anyway. YOU know what resonates and pumps YOU up! It’s your responsibility to be aware of when you need to hear those things and say them to yourself ad nauseam.

One of my personal favorites is for when I need to get out of my head and get back into life —-

You can do this. You are a badass capable bitch. Just give it a shot and then re-evaluate if you need to adjust, but you won’t know if you don’t take action. You can sit here and think yourself into a spiral or do something. The choice is yours. Use your power to your (health’s) benefit.

Then I think about what I need, countdown from three and get up and do it.

Disclaimer: This is not easy and I am in no way perfect (surprise), but just acting in a opposite way then the way I used to, which is to spiral, gives me the practice I need to turn this into an automatic habit. It takes time, but continuing to do the thing that isn’t helping you surely won’t create the change you are hoping to see. So might as well try something new to see if it will create different results.

YOUR TURN

What about you? Do you have certain things you do or say to yourself when you are struggling with perfectionism, expectations or the challenges of living with illness?

Drop ‘em in the comments…

Scratch that, I mean Hot Sick Person Summer is here!

One thing about me is I am a finicky one when it comes to temperature.

Too hot? I am a bitch on wheels.

Too cold? I am a bitch on ice skates. :)

Heat insensitivity was something I picked up from MS relatively quickly. Cold insensitivity came much later. Both are fairly common with MS.

When I get too hot, MS symptoms like fatigue, weakness, dizziness, brain fog, and more all go through the roof. It is a legit issue.

Fun fact: It was even in our self written marriage vows that my husband would always drop me off so I could get in the AC quick before parking (or park close) when we are out in the high temps. That’s how big of a deal the heat is for me.

Like many people with MS, heat insensitivity poses quite the conundrum. While your increased symptoms will dissipate as you cool down, it is still a big ass inconvenience.

I like being outside, feeling the sun rays warm my skin and getting dirty in the garden, BUT my body doesn’t. I’m not one to shy down from a challenge though, so once it warms up I deploy my Hot Sick Person Summer Hacks (say that 5 times fast).

I’m not here to keep secrets either…so read about ‘em below. And, I’m betting if you are reading this you may be heat intolerant and have a few hacks of your own - add them in the comments (if you want) so we can all learn from each other.

Hot sick person summer hacks

Prepare

Strategically plan your day around being in the heat by allowing for extra cool down time to rest, hydrate and recharge before and after.

Try hanging in the AC before you head out to buy you extra time before the heat becomes problematic - like when you are freezing in an office building in the summer and once you get outside it takes a while to defrost.

Dress Cool

You know those moisture wicking clothes? Well they are great at keeping you dry, but can also trap heat. Fabrics like cotton, linen, silk or modal are your best bets for staying cool. Make sure your outfit of the day is breathable, light colored and loose to beat the heat. Mesh panels on clothes and/or shoes are great too. I may just be abnormally sensitive but I notice a big difference in my body heat from wearing sneakers + socks compared to sandals so don’t forget your footwear matters too!

Also, hats can do wonders. I have been wearing my baseball hats from the LIFT by Sam Shop and while I am biased, they do make a big difference too! I love that I can sneak a cooling headband underneath them and feel all Chronically Badass while I am braving the warm temps. If you are curious, you can check all the hats out here - https://www.samanthasalvaggio.com/shop/hats

Make sure to wear sunscreen too. No one needs a sunburn on top of heat intolerance!

Find Shade

This is a no brainer, but look for shady spots where you can take a water or rest break. It can be helpful to set up a home base here too. For example, when working in the garden I set up a little rest spot on the shady side of the house. That’s where I keep my ice water, a cooler with ice packs, cold snacks and anything else I might need. That way when I am hot, annoyed and in need of a break, I don’t have to spend time or energy looking for shade or gathering everything I need to cool down.

Refreshing Drinks

Obviously, hydration is important. Get a nice big insulated water bottle and fill it with ice and water and drink drink drink. If you want to add some pizazz, you can add cucumbers, lemon, frozen berries, mint or whatever else. The big thing here is to keep your body hydrated. The heat is a stress on your body and it needs all hands on deck (or in this case be hydrated) to operate as best as possible. Drinks with electrolytes can be helpful too. And, try to minimize caffeine, alcohol since it can be more dehydrating. I am not saying to go without, just find a balance, like alternating between one alcoholic or caffeinated drink and one full glass of water.

Snack Attacks

Eating lighter meals or snacks with a higher water content can be helpful in that they will help hydrate you and won’t be overly filling or heavy when you are burning up outside. Freezing fruit like grapes or berries is one of my favorite summer snacks. My other go to’s are using cold cucumbers as chips for guacamole and salsa and having cold melon with mint and lemon as a snack. Bonus points if the guacamole and salsa are spicy - spicy foods can actually help keep you cool! Popsicles are another great choice too. :)

Pick Cooler Times and Take Breaks

This likely goes without saying, but just a reminder, go out when it is naturally cooler like the morning or night. Also, and this is important, speaking from experience it is 1734547% better to take a break BEFORE you think you need one instead of waiting until you are in dire need of one. It is a whole lot easier to stay ahead of it vs. making up for lost ground. So just do it - take the break.

Cooling Accessories

Options for cooling accessories are endless in my opinion. Every year it feels like more and more products become available. Let’s start with cooling accessories. There are wrist bands, head bands, ankle wraps, bra inserts, vests, neck ties and way way more. First, let me start with my favorites (these are real reviews, I don’t make any commissions on any products mentioned below) then I will get into other resources.

My top thing that I use all the time are the headbands, wrist wraps and cooling vests from Oro Sports I am obsessed with how low profile and effective they are. The co-founder, Luanne’s brother has MS and Oro Sports was the solution to the heat intolerance issues he faced. The mix of technology, streamlined design and passion really shines through in everything they make.

I also use the bra inserts from Polar Products. I like them because they are no-show and help keep my core cool without the need to wear a vest. They are key (in my opinion) at the garden or beach because they wont leave any tan lines either. #priorities

If you want to see other options for cooling accessories and companies, here is a full vendor list with discount codes from the National MS Society

And if you are looking for financial assistance for cooling accessories, MS Navigators at the National MS Society may be able to help.

Additional help obtaining cooling accessories may also be found through Multiple Sclerosis Association of America.

Fans + Misters

Everyone can benefit from a good fan. Similar to cooling accessories there are so many options, but the benefit of that is you can find one that fits your needs. Personally, I love a good handheld or neck held fan combined with a mister. I usually use a combo of both when I am gardening. Here is an example of one: https://www.amazon.com/HandFan-Handheld-Nightlights-Portable-Rechargeable/dp/B07P43HX84

I also have a mister that attaches to the garden hose, for when I sit outside (or float in the pool). That with a gentle breeze is a game changer.

Sunbathing Pool

Ok, so a few years ago at the end of the summer a small above ground pool was on sale at target for $80. At the time I wanted to be able to sit outside, stay cool, and be away from the wildlife that could theoretically climb/slither onto my lounge chair in the yard. Yes, I am that girl. So I got the pool, and we never looked back. While it does take work to maintain (thank you husband), it is so refreshing to have water to get in for a quick cool down.

Fast forward to this year and I saw these Inflatable Lounging Pools on Amazon and I love love love the idea. Cool water, cushioned base and pillow and a drink holder? Sign me up!

Add your own

We all know staying cool in the heat is a challenge, and per usual a chronic illness adds to the challenge, BUT that doesn’t mean it’s not possible to enjoy the summer. It may just require a little extra finagling to figure out what works for you.

If you have a hack not listed above, share it below! That way we all have a nice resource to go to when we are hot and freaking out. :)

A few newsletters ago I talked about the idea that wherever your attention goes, your energy flows, resulting in whatever you are focusing on to grow.

This graphic gives a little refresher…

The idea of allocating energy to things that serve your mental and physical health the best is so important when living with illness - if the things you give your attention to are positive or neutral, that’s great! But if they are negative or consumed with worry or fear, that is fast tracking your way to a rough mental health day (or week or month or year).

As humans we are wired to focus on what is wrong, what is out of place, what is not normal, what we can’t do or don’t have compared to others. Then, once you give more attention to those thoughts, not only will they get louder in your mind, you will have more of them. Often this can turn a few thoughts into overwhelming, hopeless and seemingly insurmountable hurdles which in turn fucks with your emotions and before you know it you are really unregulated and borderline breaking down.

Anyone else?!?!

You’re Human + Can Change

While some of this is just how we are wired, another big part of it is conditioning. Over time your brain strengthened the thought patterns that happened the most, it’s neuroplasticity (but in an unhelpful way this time).

The thing is, If you can condition your mind to sway negative through years and years of unintentional training, you can condition it to sway neutral too - it’s neuroplasticity (but in a helpful way).

Just to be abundantly clear the goal of reconditioning your mind is to be neutral, not an overly positive Patty.

Why?

Positive isn’t realistic or sustainable. Life is not rainbows and butterflies constantly. It will always will be full of twists and turns, which we must learn how to navigate - without getting sucked into a negative, hopeless pit of despair or trapped in a delulu world of smiles and ignoring what is.

So how does one train their mind to sway neutral instead of pessimistic and bitchy or full of toxic positivity?

First you need to observe your thoughts - meaning don’t just listen and believe every thought that crosses your mind. What are you thinking about? Once you have a thought, acknowledge it. Do not judge it - reflect on it, remember that thoughts are NOT facts. Is this thought true? What would be an alternate idea? And, if the thought was negative try entertaining a neutral (or positive if you are feeling frisky) point of view.

Example #1 - entertaining different perspectives

For example, say I drop my keys for the 8th time that day and my next thought is ‘wow my body is useless’. I acknowledge that thought and reflect on it. Hmm saying my body is useless didn’t feel great to say (or hear). -Maybe my body isn’t useless, alternatively:

• maybe I’m dropping things because I have MS and for better or worse I need to focus on what I am doing more (which would actually be nice instead of frantically rushing)

• maybe my body is just dropping keys because I am a busy, multitasking human

• maybe my body is doing a lot just to get through the day and while dropping keys is frustrating, my body is doing a lot of other stuff right to allow me to be here today

In the above example you can see (or read) that I had a thought, paused and reflected on alternate points of view. Adding space between you and your thoughts can help redirect your attention and decrease the amount of energy flowing into an unhelpful thought. It’s like you are (metaphorically) stepping back and interrupting the energy flow.

Example #2 - validate, accept and redirect

Here is another example with some additional validation thrown in…

I notice the thought ‘Wow, you aren’t going to do anything today?’ That thought is quickly followed by ‘well then you are going to get behind. Who is going to do these chores? The house is going to be gross. It is going to be so much more work to clean it then. Why is this happening? Why is everything so hard?’ And the list goes on…

Instead of continuing to focus on the spiral that is gaining in intensity in my mind, I pause and take a breath.

I ask myself what is the benefit in going down this spiral again. It never leads to anything good, I know that.

I acknowledge the thoughts and tell myself the following to validate my feelings and redirect my energy - ‘I know it is frustrating to be limited by what you can do physically. Being worried and overwhelmed are natural responses. I know that fueling those feelings with more attention is not beneficial to me. It only hinders my ability to rest, which is the opposite of what I want to do. So instead of continuing down this path, I will remind myself that resting is what I need and by doing that now, I am taking the best care of myself and setting myself up for success in the future.’

Then when I inevitably get caught in the spiral of thoughts again, I remind myself that I am doing what is best for me right now.

WE’RE TALKING ABOUT PRACTICE

This idea of interrupting your thoughts and thus the energy flow is simple in theory but not easy. The good news is that neuroplasticity exists - our brains are malleable and with time and lots of consistent, intentional practice we can build and strengthen new pathways thus making it easier over time. The key is harnessing the power of neuroplasticity for good.

That may mean that some days you are acknowledging and reflecting on your thoughts dozens and dozens of times. This can be frustrating but, being mean to yourself won’t help - that’s fucking for sure.

You have to stay kind and firm in your commitment to feeding your best self not the cranky, overwhelmed self that shows up in that moment. And, be aware that it won’t be perfect all the time - some days your thoughts may get out of hand - the human experience is riddled with ups and downs. Find comfort that nothing lasts forever and the light will chase away the dark sooner or later.

IMPORTANT SIDE NOTE on Physically feeling the feels

Now I am well aware that our feelings, especially the big ones, can be physically felt.

For example, if I am angry, I get hot, my hands feel like they are vibrating and I often feel like a tea pot about to burst. At that point, trying to reframe my thoughts will only get me so far. What is actually helpful for me in that moment is to express the energy that has accumulated.

If you are like me and are prone to getting physical reactions to emotions, here are some ideas…

• Give yourself a time limit. It’s fine to be angry and sad, and it doesn’t have to monopolize your entire day. Give yourself 15 minutes to feel and process the emotions then shift your focus to something else. For example, if I am angry I will put a timer on for 15 minutes and either write out my frustrations, stand up against a wall and push it as hard as I can on and off, or go outside and focus on taking deep breaths. Find what works for you, set a timer, and go!

• If the sensations are still being particularly sticky, extend the timer or try something else to fully redirect and channel that energy elsewhere.

  • For example, one day recently I could NOT get out of being angry, anxious and sad. If I wasn’t expressing those emotions I was frozen doom scrolling on my phone. I tried to give myself a time limit but could not stop which only heightened my anger, sadness and anxiety. In the moment I could not figure out a way to stop the spiral. Normally I would go outside but my body was not functioning well so even a task like weeding would be too much. Finally at the end of the day, I chose to do indoor activities something equally mindless and would get my hands moving to release this pent up energy. I colored in a coloring book and then worked on a puzzle. It took some convincing to get started, but focusing on completing something else allowed me to release stored energy and emotions and did the trick.

IT’S LIFE

Emotions will arise, thoughts will go unchecked, breakdowns will happen. So will laughing until your face hurts and feeling pure joy when the sun hits your face. Life is a topsy turvy beautiful mess. It will change, the ups won’t last, and neither will the downs. The goal isn’t to avoid the downs, it’s to recognize when you are in a down, not panic, and do things that support you during the down.

Yes, it is uncomfortable to be in a (longer than ideal) down. That said, we are living with a chronic illness, we are pros at being uncomfortable. While that doesn’t mean it is okay, we are all in this together and you are not alone. You can get through a string of shitty thoughts, a line of high symptom days and/or the madness of the healthcare system.

You have a 100% success rate of getting through it - you will get through it.

OPTIONS GALORE

Who doesn’t love choices, right? Whether it is what to eat, what to do (or not do), how to respond to a situation or what medicine to take (or not take), you have choices. Even though it may feel like chronic illness steals your choices away, it does not. It changes the choices you have, but you do still have a choice.*

*Now, recognizing and accepting that you still have a choice is a whole different story (and if you want insight on acceptance go here or awareness go here).

In healthcare specifically, our options have greatly increased due to advancements in research and technology. This is true for many chronic illnesses, but especially for MS.

Disease Modifying Therapies (DMTs) to treat MS first hit the market in 1993. In the 30 years since then, over 24 DMTs have been introduced to manage MS. If you know anything about the slow and expensive drug development process, this progress is truly astounding.

DMTs have been shown to:

• Reduce the amount of lesions and relapses and minimize the amount of disability acquired over the course of someone’s life

• Improve prognosis and quality of life for people with MS (in general)

For the record, there is still progress that needs to be made, specifically for those like myself with SPMS and those with PPMS and we can still celebrate the progress that has been made thus far.

Don’t take my word for it, look at this long ass chart with all the approved MS DMTs below.

Note: The chart below indicates the high-efficacy DMTs for MS (based on trial data, see chart for more info). Everyone’s MS is different and not everyone needs a high efficacy DMT. So please don’t think if you are on a moderate therapy that you are on some sub par med, or if you are on a high efficacy med your MS is really bad and you are destined for a terrible future. That is not how it works. :)

Anyway, with options abound, it is hard to know what is the right fit. Add on the fact that every person’s MS is different PLUS the possibility of side effects, accessibility, cost, logistics and personal preferences and it may start feeling like the room is caving in. If that happens, I get it and I’ve been there -  take a few breaths and remember you always have a choice.

Goals of DMTs

First, let’s chat about DMTs for MS in general. These meds are different than what one may initially think of when they think of medicine. For example, if you have a headache, you take Advil. In an ideal world it goes away and you go on about your day. MS DMTs are not like Advil. They minimize damage and disability over years, not improve current damage or disability within a few hours or days. While your body does have the ability to heal damage (to a degree) with time, it’s not like you experience symptoms from MS and then you take a DMT and all of a sudden those symptoms improve or disappear quickly aka it’s not like ‘oh my leg is numb, let me take my DMT’ and then a few hours later your leg feels back to normal.

There are some DMTs where you feel better day to day, but that’s not their goal. The goal of a DMT is to minimize the big, acute, disabling events like relapses over the course of years. Therefore reducing the amount of disability and damage you accumulate over the course of your life - in short, DMTs are more of a long term benefit.

You may experience an ebb and flow of symptoms day to day even when you are on a DMT. And if you do, that does not necessarily mean it’s not working (obviously if you have concerns check with your doctor). Often, after being on it for a certain number of months, you will have an MRI to see if any new lesions have formed in order to evaluate if the medicine is working. If there are not any new or enhancing lesions, and you haven’t experienced any relapses, then your DMT is working! YAY!

While it may be frustrating that DMTs may not help how you are feeling day to day, all hope is not lost. There are things that can help how you feel. That is where lifestyle modification comes into play. Things like minimizing stress, staying hydrated, eating nutrient rich foods, getting high quality sleep and incorporating movement into your day can all help. I know you may be thinking, ‘how much can it reallllllly help?’. My answer to you as someone who has been on both ends of the spectrum, is A LOT.  On top of that, physical and/or occupational therapy and other medicines for the specific symptom you’re experiencing can also be beneficial in managing symptoms.

A WORD ON SIDE EFFECTS

To touch base on side effects from DMTs, they vary depending on the medicine and how it acts on your immune system. While no one wants to experience side effects, anything you put in your body can cause a side effect.

Drink coffee in the AM? A side effect of that caffeine is the jitters you can get with it. Take advil on an empty stomach and it makes you nauseous? That’s a side effect.

Some side effects are manageable, others are less so. Any side effect list can be fear provoking, not just those with MS DMTs. Tylenol and other over the counter meds are no different. At least they state the possible side effects, while supplements, vitamins and the like are not required to. If they were, you may be surprised at the lists on those too!

Believe me, I know the lists of side effects can be overwhelming, but please please please remember that just because a side effect is listed, does not mean it WILL happen to you.

It’s important to understand possible side effects, how often they occur and what they are. Then decide what you can and can’t handle. Since we all have different values and perspectives, one person may not feel comfortable with a side effect that another person feels completely fine managing. It is up to you to find a balance that works for you.

If you aren’t sure if a side effect is negatively affecting your life or not, track how often it happens and the impact it has on your life. Then, assess your data. You can even share it with your doctor and talk it through.

DMT EXPECTATIONS + NOTE on PERFECTION

In terms of expectations - no medicine (or anything else for that matter) is perfect. Often medicine for chronic illnesses help in management but do not CURE it and in some cases it may not COMPLETELY manage it to the point where you never have a relapse or problem again, so keep that in mind.

I know, I know, it sucks. Anddd its also reality - meds may not stop EVERY relapse or new lesion and they may cause side effects. But you won’t know how a particular DMT works for you specifically until you try.

Since you may experience side effects of the medication and the medicine may not stop all lesions and/or relapses, it is up to you and your doctor to find a balance that works for you. Ideally, you are looking for something that minimizes disease activity as much as possible and has as little side effects and impact on your quality of life as possible. Sometimes that means you may have to live with side effects b/c an effective medicine that minimizes disability, relapses and new lesions may be a worth the headache (literally). But again, it is UP TO YOU to decide.

Treatment for MS is not black and white, it is very, very gray. The good news is that there are so many more options for DMTs, it is easier to find one that works for you and that you can incorporate into your life. If one is ineffective or causes undesirable side effects, there are other options. There is no shame in needing to switch medicines to find a better fit for you and your wellbeing so take your time in finding one that works for you.

TWO APPROACHES FOR TREATING MS

Please keep in mind that this is all general information. Talk to your doctor regarding any questions you have. Below you will find the two approaches and a cute little flow chart showing possible treatment paths.

#1 INDUCTION APPROACH

This is the ‘wham bam thank ya ma’am’ type of approach. The Induction Approach starts strong immunosuppressive medicines to address the inflammatory activity early. These DMTs are often labeled as ‘high efficacy’ and include Tysabri and the B-cell depleting therapies like Ocrevus or Kesimpta (this list varies, these are the ones most commonly listed).

Reward

The idea with this approach is to use a stronger medicine to slow damage in the early stages after diagnosis. Less damage now means less neurodegeneration later. Limiting inflammatory activity early sounds promising, and of course like anything there is a trade off….

Risk

Anything that is higher efficacy will carry a higher risk in terms of short or long term side effects and other ways. This is true for many meds, not just MS ones. The trade off is especially important to be aware of since medicines for MS are something you’re on for a long time.

One other potential downside is there aren’t guidelines to say how long one should be stable on high efficacy meds before de-escalating therapy.  And in some cases, de-escalation can be associated with increased MS symptoms or MS rebound.

When could this be a good fit?

If you have highly active MS, highly value efficacy, and/or are risk tolerant (like you can accept the possibility of more frequent infections and/or the risk of other side effects) this may be a good option for you.

#2 ESCALATION APPROACH

The other option is to take a less hit it hard and fast approach, and go with an intermediate efficacy med, and then go from there aka the Escalation Approach. Basically not everyone needs to be on a high efficacy med to stop lesions or relapses.

With this route, you would start on a intermediate/moderate efficacy DMT and have very careful and adequate follow up to detect disease activity breakthrough as quickly as possible. IF there is breakthrough activity you and your doctor will decide to try another moderate efficacy med with a different mechanism of action (works differently in body so it may be successful) OR go to a high efficacy med at that point.

Reward

The benefit of course is that if the intermediate efficacy DMT is effective for you, you are not more or less over medicating yourself by taking higher efficacy and higher risk meds.

Risk

While the intermediate efficacy meds may have less risk side effect wise (in general) there is the risk that you may experience disease activity or have a relapse. And of course, you don’t know what physical or mental symptoms the relapse could cause so that is your trade off with that route.

When could this be a good fit?

If you value a cautious approach in terms of side effects and risk, this may be the route to go.

ESCALATION VS INDUCTION THERAPY

How are you supposed to which way to go?

Look at the info below - first is a summary of what the research to date (Feb 2024) shows. Second, there is a flow chart with possible treatment paths. Third, is a note on factors that can influence what medicine to choose and a final word on making a decision on a DMT. If you have more questions or need more clarity, speak to your doctor.

Research shows…

No published trials comparing the escalation approach vs the induction approach head to head exist currently. There is research to show that the induction approach may result in better outcomes with MS however those results are mixed and have limitations. Right now, it is not clear if the benefit is seen only in patients with an aggressive MS onset or in all patients regardless of onset. Therefore, more research is needed. So, for now, the decision of induction vs escalation therapy is up to your doctor and you to make collaboratively.

In good news, there are two studies currently in progress - TREAT MS and DELIVER MS. Their projected end dates are November 2026, so stay tuned!

Flow chart with different treatment strategies

If you are a visual person, the chart below shows a variety of different treatment paths. Obviously, not every possible outcome is listed, so don’t come for me if the path you have chosen to take is not below. :)

FACTORS THAT INFLUENCE DECISION MAKING

You may notice in the above chart the *asterisk is showing factors that may affect which DMT you choose. I have an article that goes into more detail about this and outlines my personal DMT journey (up until Jan 2023) - you can find it here.

THE FINAL ANSWER

Deciding on a medicine for MS is a big decision and one you need to feel confident about. So please, if your doctor says something that you don’t understand or don’t agree with, get curious, be respectful and ask questions.

For example, if they say you should do a high efficacy therapy, ask why they believe that and what factors led them to that decision. Or, if they are concerned about you staying on a medicine because of side effects or for another reason (like staying on Tysabri if you are JCV+), ask how many people choose to stay on despite side effects or being JCV+, or how long could you stay on the medicine considering the side effect (or JCV+ level). Or, ask what the likelihood of a negative outcome is or anything else you are concerned about.

It’s not illegal to ask questions to better understand a doctor’s reasoning or recommendations and in fact it is a great way to be involved in your care and advocate for yourself. One disclaimer tho, while it is not illegal, bring your highest priority questions to your doctor. Often doctors are pulled in five million different directions, have large patient case loads and must do a lot of other tasks that patients aren’t always aware of. As much as we would love to be able to grill a doctor for an hour about meds, it isn’t always feasible for them - they have bosses too and may be stuck in the middle and doing the best they can. I’m NOT saying this is okay, I am just saying this is how the system is set up. So, make a list of questions in order of priority and ask as much as you can within the time you have.

Lastly, please know that whatever medicine you pick does not have to be the one you stay on forever and ever. It may take a few tries to find one that works for you, and that is okay! The most important thing is that there are lots of options in the MS world and even more advancements to come. So try things out and always maintain some hope. :)

Whether or not you like it, you have probably realized that chronic illness forces you to stop, adjust your expectations and accept loss - loss of the body you knew and the life you expected.

It’s an odd experience to watch your life morph into something you else, especially something you didn’t expect or want. You know the times I mean - when you are in the middle of change and you can’t stop it. I’ve had plenty of these transition periods riddled with change - diagnosis, any one of my many relapses, med changes, relationships and more. If you’re living with an illness I’m willing to bet you have had times of unwelcome change and loss as well.

These changes and losses are often accompanied by a shift in relationships, hobbies, career, identity and more. With loss, comes grief. While experiencing grief is not fun, it is part of the process to live with illness and fucking thrive.

With illness, you may feel denial or anger that this is happening, sad about the life you expected being interrupted or have a deep desire to go back to life as you knew it before. You may be unsure of how this diagnosis will affect your future, your relationships, your goals, career and the list goes on. That is all super fucking shitty and elicit hard emotions AND it’s a normal part of grief with chronic illness (sorry to be the bearer of bad news).

It’s important to recognize that grief in and of itself can be a sticky place - hard to move in and out of. Of course grief comes along with diagnosis, but it also sneaks up and interrupts daily life at times. You may feel like you are making strides, only to be sucked back in after a triggering event. Which, in my opinion, is one of the reasons grieving with chronic illness is so exhausting - it’s relentless at times.

Here’s the thing though - even in those moments of overwhelming change, loss and grief you have a choice - you get to decide how you want to respond to what’s happening. Your response is where you have the option to make a choice that benefits your future self, vs hurts it. Your response is where you shape your future. Your response is where your power lies.

So we get that your choice and response to grief is powerful, but why do it in the first place?

The benefits of Grieving

While grieving is a bitch, the result of working through your grief is worth it. When you choose to let the grief out, you uncover your power. It is through grieving that you gain clarity, acceptance of the situation and confidence in yourself.

Grieving your losses, allows you to open the door to the future. It gives you the space to recognize, ‘my life doesn’t look like how I thought and I’m not happy about it, but I can still find happiness and joy because a different life doesn’t have to be a bad life.’

Just like that you are creating space for possibility. You are taking ownership of your life. You are accepting reality and shifting your focus to living your best life in THIS moment. Not in the past, not in the body you wish you had, not in the future you expected, but IN THIS MOMENT.

Alright we know that grief literally shows up whenever it wants and takes a seat at the table, regardless of if you want it to be there or not, but WTF are you supposed to do when the unwelcome guest comes around?

Tips for when you’re experiencing grief

Grieving is a journey, and unfortunately with chronic illness, it is one you are going to stumble upon often. The key is recognizing when you are grieving and choosing to be extra compassionate with yourself during that time. When you know your grieving, try these things…

• Pay attention to your feelings and acknowledge them. It’s okay to be sad, angry or anxious (or any other feeling). Affirm and validate yourself, acknowledge that you are grieving/mad/sad/etc and put names to the emotions. Recognizing how you feel and naming it can make it less overwhelming. Plus, knowing exactly what you feel helps you work through it.

  • Tip: if you aren’t sure about what feeling you’re experiencing, google the feelings wheel. That will give you lots of emotions to pick from. :)

• Remind yourself there is not a right way to grieve. The right way is the way that works for YOU.

• Take care of yourself - take action depending on how your feeling. Sad? Cry it out. Angry? Write it out. Anxious? Go outside and take some deep breaths. Do what you need in the moment to care for yourself. There is nothing wrong or bad with feeling a difficult emotion. While it sucks to be uncomfortable, feeling the emotion and processing why you feel that way will help you work through it. As far as what action to do with what emotion, that is an individual preference - try out different things and see what works best for you.

• Keep it in perspective. Grieving hurts and can be all encompassing but put that shit in perspective - life is not black and white. It’s not ALWAYS painful and it won’t feel this way FOREVER. If you need to, think of other times when times were hard. How did you get through? What can you do now?

• Alternatively, think of things that motivate you and bring you joy. What are some things in your life that brighten your day? This may be extra hard, but even if it is seemingly silly/small, like how good your teeth feel after a good brushing, it counts!

• Find your people. You’re not alone in this. Friends and family can offer support. If that is not an option, look for support groups, search on social media for someone you connect with (just be mindful when you’re scrolling). Seeing others going through similar experiences can be so helpful in making the grieving process less isolating.

• Prioritize your wellbeing. There is no way around it - grief is fucking exhausting. It can drain you physically, mentally and emotionally. Have a renewed interest in nurturing your overall health at this time. I know, I know, you feel like a bag of bricks, but *try* to eat foods that fuel your body, incorporate light movement, limit caffeine, minimize stress, prioritize sleep and stay hydrated. If that is too much, that’s a-ok, just commit to doing something to help your wellbeing daily.

• Be nice to yourself. If you wouldn’t say it to a friend, don’t say it to yourself. Stop adding salt onto the wound. No one is asking you to be the most positive person on the planet, just don’t make it worse by beating yourself up and adding more negativity to a challenging time.

To close, let’s keep it real, if your goal is to live your life with illness and fucking thrive, you gotta grieve.

I know, I know, grieving is a lot, but you know what is more challenging?

Moving on with your life if you are constantly wishing for what was or fighting what is.

So, like I said, you gotta grieve and while you do it, follow the tips above.

Do you have other tips to add? Leave it in the comments!

Even if you have been living with illness for a while, it still puts on extra stress. I’m a great example of that, because I recently had my 18 year anniversary with good ‘ol MS and let me tell you, I (and the immediate fam) have been *through it* this past December.

• Our sweet orange cat, Clifford, unexpectedly past away and we are learning how to navigate life without that ball of energy yelling constantly.

• Grieving Cliff’s absence as a household has been a balancing act since everyone (including our other cat, Lilly) grieves differently.

• I have been having more difficulty with MS lately along with mysterious symptoms that I am still learning how to best manage. Both of which severely impact my life physically and mentally.

• The holidays (and everything that comes along with them). 

• School loan nightmares on top of the general stressors all adults have (finances, home, etc etc).

• Likely at least 5 other big things that I have just blocked out (haha, at times it is necessary)

Obviously, I’m glad to have made it through the month alive and remotely sane. That said, I put together the things that I did that helped soften the blow of the absolute shitshow that was December.

How to get through Overwhelming times

If life is really dishing out some challenges, or if you feel especially overwhelmed, take a look at the list below and see what you can try to integrate into your life to make it less overwhelming. No need to do everything on it, just pick one or two small changes.

Accept what is happening - radically.

Meaning, you don’t need to LIKE what is happening to accept it. You just need to recognize that this is your reality and avoiding it, fighting it, or denying it is only going to leave you stuck. Accepting your reality and shifting your focus to actual things you can control like your own behaviors and actions is the way to get unstuck. 

Of course no one is saying to be happy that your cat died (for example), it’s just about recognizing that you still have control in a seemingly uncontrollable situation. You have a choice to feel, move through and process the emotions, or stay trapped in them. 

While shifting your focus to things you can control and then taking actionable steps to shift your situation is not an easy thing, it is possible. You just need to face whatever is happening, know yourself and what you need in that moment, and then actually do that thing. 

Prioritize your self - physically and mentally.

I know you may be like ‘wtf Sam, how am I supposed to do that when my world is crumbling?’ Well, it’s a harsh truth that if you don’t take care of yourself you can’t take care of others or other things going on in your life. So, you have to start with YOUR wellbeing first. And no, it’s not selfish.

• Fuel your body with healthy foods and stay hydrated. If you aren’t providing your body with energy, it is REALLY gonna be hard to get through a chaotic season of life. If eating healthy is too much right now, that is fine. You can try ready made meals or salads to cut down on prep time. Alternatively, plan time to meal prep and relieve stress at the same time - gather your ingredients, put on some good music, and tune everything out while you are cooking. And if all that is way too fucking much, that’s fine, just don’t forget to eat something and drink water. Let’s be real - any fuel is better than no fuel! 

• Get on a sleep schedule, and try your best to stick with it. This ties in to the above point that any fuel is better than no fuel. Your body needs sleep. It’s when it recharges to prepare for the next day’s challenges. While sleeping during a hectic time may seem counterintuitive or ridiculous, it is impossible to go go go all the time. Rest is productive.

• Move. You don’t need to exercise for long periods or anything like that, just move in some way. Do stretches in your bed, walk to get the mail, stand up and march for a minute. The point is to just break up time spent not moving. As long as you don’t over do it, it will give you some energy and alleviate stress. 

• Tune in and check in with yourself often throughout the day. How are you feeling mentally and physically? Do you need a little break? Is there something little you can do to help yourself? You are already dealing with a shitload, no need to be a hero and not take breaks on top of it. Plus, the better you care for yourself, the better you can show up in life. 

  • On this note, if you are feeling particularly stressed and realize you need a little break, try getting outside and breathing fresh air, doing something creative like a coloring book, watching a show or listening to music. You gotta figure out a way to provide some stress relief that isn’t scrolling mindlessly on social media or drinking excessively. Social media, alcohol, and other vices may be fine to do in moderation, but if it is getting out of control then you need to take a step back.

Prioritize what actually needs to be done.

When life is dishing it out lot of things at once, you need to pause, take a look at it all, and figure out what things NEED to get done, vs things that you WANT to get done vs things that WOULD BE NICE to accomplish. And since we are all great at putting others needs in front of our own, I will make it easy for you. Anything that is a basic need or has to do with your mental or physical health go in the category of NEED. :) 

Ask for help.

Yes, it is hard, but you know how you like to help others, well people WANT to help you too. Seek support from friends, family and community. Be specific in your requests (I need a ride at 12pm on Wednesday for a doctor appointment vs can you drive me sometime?) and don’t feel bad asking. Again, people want to help.

Say no.

Be firm with your boundaries during this time. There is no need to add more onto your plate, or agree to do things just to be nice. Remember, your health and wellbeing is top priority not trying to have as many commitments on your calendar as possible.

Get social.

I mean do something chill that is also social, not partaking in social events that are draining productions. Sometimes having some time with a close friend or even just getting out in public at a park or doing an errand can get you out of your own life stresses for a bit. That reprieve from your overwhelm can really help. 

Have a saying or mantra to say during the day.

What is going to be helpful to hear when you are over all the stressors of the day? Having a mantra to repeat can be grounding in the chaos. 

• Ones to try:

1. I’m doing the best I can and that is good enough.

2. One step at a time.

3. Every little bit counts.

4. Or remind yourself to breathe and then actually taking some deep inhales and exhales. 

Be nice to yourself.

Self compassion goes a long way. If you use your words or actions to beat yourself down on top of all the craziness of life, you are making it ten times worse. So don’t be a dick to yourself ESPECIALLY when life is dishing out lemons. For example, instead of saying/thinking that you are not good enough, shift that to ‘I’m doing the best I can and that IS good enough’.

At the end of the day, life has its peaceful moments, but also can turn into a clusterfuck in a flash. It can be even harder to ride the rollercoaster when you are balancing an illness on top of it all. That said, there are ways to manage the stress, prioritize your wellbeing, and roll with the punches. And, like everything it takes work and practice, but that practice will pay off.