Lessons Learned Along A Journey to Higher Heart and Soul
Be yourself; Everyone else is already taken.
— Oscar Wilde.
Okay. Here we go! I decided to write a blog to share my story in the hopes that it’ll help others along their own paths. Get started with “The Intro” post for a little background and subscribe below to get notified when I add new updates.
Being that I am pregnant, the future has naturally been on my mind a lot lately. I used to be worried that having a child was irresponsible because what if I ended up in a wheel chair someday, how am I going to take care of my kid? Play soccer with them? Go on a hike? What will their quality of life be like if I can’t give those experiences to them or end up being a burden? And as I sit here with a general tingle in my legs and realize that is a valid concern that I should probably be at least prepared for, it isn’t my only option. I recently watched My Octopus Teacher on Netflix, and man did it hit home about the sacrifices we make for our children. (Look at me, getting all wise about motherhood and I don’t even have a child out of the womb yet.) Well, if I thought I was motivated before to seek out the best lifestyle and medical choices to optimize my mobility and mental health, you had better believe I am committed to a healthy me now. Having my first baby due in just a few short months I have a renewed sense of urgency, of passion to pursue the right path to make sure I can provide for and share life with my little one.
I have heard many times that MS symptoms often get better or go into remission when women are pregnant. This is because of those magical things called hormones, and also a naturally suppressed immune system. A pregnant body doesn’t want to attack the fetus, so sends some signals to tell the immune system to chill out for a while. I have found thus far that my symptoms are not completely gone and I’m left to decipher, as usual, what is an old lesion? What could be a new one? Symptoms seem to be occurring a little more, but not really increasing in intensity or persistence. Except, are they? Certainly no where near as bad as flare ups in the past (when my body was creating new scarring and actively munching away at myelin sheath around my nerves in my brain and spinal cord), when intensity went from a 4 to an 11 and became painful, and didn’t go away after a few hours but remained. Am I just exacerbating myself by simply being pregnant and tired? Stressing about getting ready for baby and what to do about work and oh yeah, the virus that is surging across the community I live in, and the world at large.
On a positive note, I am also told that MS symptoms tend to get better in the third trimester. Oh, good. I’m coming into the home stretch now, so maybe have a little more to look forward to besides that screaming, pooping bundle of absolute joy arrives. As a defense mechanism, I think I have been sort of mentally preparing myself for the worst – what if my kid is a serial killer? What if they just aren’t a good person? The age old, ‘what if I mess them up’ fear? And God forbid, what if something goes wrong and we don’t end up with a baby in our arms in February? Miscarriage or still birth are never off the table. While my husband was immediately kissing my belly and talking to the cluster of cells the day we found out we were pregnant, I was initially thrilled and then immediately a bit guarded. Best to not get too attached, right? Nah. I’m done with that. Nice try, brain. I took AP Psychology in high school and I know what you are trying to do. I’ve come to fully embrace what is about to happen. The idea of it anyway, because who the heck knows how it will actually all turn out. It would be earth shattering and heart breaking regardless if anything terrible were to happen, and as we get closer to the end of this pregnancy journey, I am finding myself more and more excited to get snuggles, share giggles, clean those dirty diapers and wipe boogers. Like, genuinely excited about donig more laundry with all those wittle pjs, tiny socks and puke soaked burp rags. I think my heart might just explode thinking about it. I want to be a caregiver, and give it my all. I want to be a momma. Then again, ask me later this Spring when I am sleep deprived and haven’t showered or had any adult contact besides my husband for an extended period of time 😉 Can’t wait!
Do I know exactly what will happen in the future? No. But the only way to guarantee it won’t be great, is to not even try. While uncertainty will always exist, I’ve come to realize a framework for life will at least keep you sane. With MS, it’s all about the roadmap. It’s why when I get tired or stressed, my symptoms get worse. It’s why I also try to avoid getting sick, because tired, stressed and or sick bodies fighting off infections can’t reroute to another nerve pathway around the scarred areas in my brain or on my spinal cord. The roadmap visual gives me something tangible to reach for when I have to make sometimes hard decisions that are what are best for me and my body at the time.
Not only is it unpleasant to feel numbness and tingling, each time I have to go through the guessing game I often speak of – is this an old lesion I can no longer work around? Or is it a sensation that is intensifying? Do I need to call my doctor and have more MRIs, more steroids? What if the steroids don’t fix it this time and this is permanent? The costs and side effects associated with such testing and medications are usually enough to persuade me to ride it out unless it is without a doubt painful and unbearable. Sometimes the emotional piece is the hardest. Sure my legs are tingling, that would be one thing to be able to comprehend and accept. What is scary is knowing that despite all my best efforts on every level, that I might have a form of MS that doesn’t respond to treatment, preventative or otherwise. That this will get worse. I just don’t know.
But the roadmap gives me hope. As doctors and the best minds out there continue to learn more about MS and how it functions, I am encouraged by this visual. This image gives me something to work on – if I know the incredible human body can compensate and make up for its roadblocks (the scars), I have a goal. Get around those damn road blocks. I don’t have control over everything. But there are some things within my scope of power. I can learn a new language to help create more neuro pathways, eat foods that don’t inflame, but nourish my body – especially things that build up and can help repair myelin and my nervous system. I have to at least try! If not for myself than for the life inside me right now. I’m no surprise quite focused on growing this little alien right now, but realized today with a sense of urgency that it is not selfish to continue to take time and resources to work on healing me. Because how can I be the best mamma I can be, without first taking care of myself?
Wish me luck.
-Aimee
Well, guys. It’s been a while! Please know that I have not forgotten about you. It’s just been kind of a weird year (am I lying?!)
I’ve been meaning to get you an update for some time now. With the initial quarantine in March I took some “me time” to hit pause. Re-center and all that. It was a very introspective period, and I wasn’t quite ready to put all that into words. Or give much of myself to the world, really. I needed that time to go inside and explore some things. Coming out of summer, I am ready to let in the world, the light, and start contributing back once again.
That is one excuse for my extended absence. The other big deal that has been on my mind every waking minute is that in May (or was it early June?) my husband and I found out that WE ARE PREGNANT! Well, I am. He helped make that happen.
We are first timers here. We are learning a lot along the way already. One such tid-bit that isn’t well publicized, probably because it doesn’t fall into the romantic nice little miracle baby package, is that miscarriages are really common. Like 1 in 4. A quarter of all pregnancies self terminate so to speak, and most miscarriages occur in the first trimester, or the first few months of pregnancy. So, although it was extremely difficult to keep the big secret, we did for a while, just in case. And now, 6 months in I am still hesitant to tell people! Like I am jinxing it or something. Needless to say, being that this major life change has been on my mind constantly, it has been hard to sit down and write about anything other than the mental and physical changes I am currently experiencing. We’ve gone pretty public with the info at this point, so I figured it’s time to let the internet in on the big news. My husband and I are terrified and excited to say the least. But so grateful that we get to do this. More about all that as this journey evolves, I’m sure.
As soon as they find out, most people are curious how this will affect my MS. The good news is, since a woman’s body naturally lowers it’s immune system so as to not attack the baby (if you have ever been pregnant you will understand why your body might want to do this. For all intents and purposes you are supporting a very efficient parasite, and it certainly feels like it), most women actually see some relief from MS and go into remission for a while.
The way my Neurologist explained it, the danger comes in the few weeks after birth. As he put it, if you think about when we were having babies back in the day out in the woods, we needed to have a surge in immunity as soon as that baby is out to protect us from infection.
Based on this sound reasoning, I’ve had to make some adjustments to my medication schedule. I had had my last Ocrevus infusion in February, waited a few months before attempting to get pregnant, which was the general recommendation, and then suspended my next dose which was supposed to be in August. I am currently still protected from my infusion in February, per my doctor, but it does mean that I will be due again as soon as baby is born. That means I will only be able to breastfeed for a few weeks at most and then switch to formula in order to get my next dose. Since Ocrevus stays in your system for so long, and is thought to pass through the placenta and breast milk (a lot is still unknown), most medical experts recommend not getting direct infusions while pregnant and say that babies born to mothers with the medication in their systems may have lower immunity at first. They should be making more B cells and reaching full immune system functioning as they grow outside the womb, though. It makes sense considering that our bodies are quite resilient and still continue to try and do what they do. Which is why I need repeated infusions over time and not just one. Breastfeeding my baby would continue to suppress their immune system, hence the switch to formula. And from everything I’ve read or head from the wonderful people at my OB’s office, really the most important time to be breast feeding are within the first few weeks, for a multitude of reasons. That is reassuring considering I tend to like to go the natural route when it comes to, well, just about anything. This little hippie is okay with embracing formula, though, if that is what is best for mamma and baby in the long run. One thing I think this parenting thing will teach me is to be educated about my options, but be flexible in how I have to adapt to certain situations. I think that will apply to a lot in life.
What I can report on MS symptoms lately is sometimes hard to tease out between MS, pregnancy and regular life. Hormones, global pandemics, family, friends, work, oh yeah, we bought a house and moved…it’s no wonder I’ve been slightly stressed and tired. But I could also attribute that to lack of sleep per my new found pregnancy insomnia. And don’t get me started on how much the first trimester sucked. I’ll come right out and say it. There were no cute overalls while painting a baby room like you see in the movies. It was more like a 24-7 hangover complete with extreme nausea. I didn’t make it too far past the couch all summer. Amy Shumer has a great bit about this in her Netfix stand up, Growing. And if you have HBO Go, her docuseries Expecting Amy is a refreshingly real take on pregnancy. I highly recommend to all, whether you can relate or not, it is pretty eye opening and has some great social commentary on what society expects from women. I laughed, I cried, I really loved it all and appreciate her sharing her experiences.
Other than all that, I can say as far as my experiences go, I’ve had some leg numbness brought on by walking the dogs, which is status quo for the past year at least. Based on the timeline of that recurring issue and the lack of increased/unexpected frequency or intensity, I think that is just old lesions, or scarring on my spine somewhere that gets irritated when I walk for extended periods of time. It could be just part of my ever evolving new normal. My doctors in the past have assured me that this is not worsening anything, and that the benefits of exercise are worth it if I am not too uncomfortable. So, walk on, I say. I will continue my mission to try and heal lesions or help my body work around them through my diet and lifestyle choices. I am also hoping to prevent new damage with the new medication I am on, combined with efforts to reduce triggers like stress and sleep deprivation. Having a kid should be fun 😉
My thoughts about said baby – I am not perfect. I will do my best, though, and more importantly promise to not leave it at that. To not just throw my hands up and say, “well, I tried with the hand I was dealt.” My commitment to you, little one, as I feel you wiggle around in my belly is that I will help you grow not only physically but give you as many tools as I can for you to grow emotionally and spiritually as well. As you grow, I promise that I will grow with you. I will not stop learning and adapting and making myself better in order to better assist you. There is a lot you will have to do on your own. Just know that I’ll equip you the best I can to deal with the ups and downs. The journey of life isn’t always easy but it’s oh so worth it.
And to my friends, family, and fellow humans out there, let’s all keep in mind that we are all figuring out this thing called life. We can’t judge others because we don’t know what they are going through. Right now I’m working out where my comfort level is at on a couple of different levels. For the most part, at first glance I look like a young, healthy person. But, I’m immune compromised and pregnant. I feel like it would be irresponsible to not take coronavirus seriously. That does not mean that I live my life in fear, terrified of this thing. Nor does it mean that ignoring it is the best idea. I need to remember that others have their reasons for being more nonchalant about this. They have been different places, seen different things, and have different experiences in other time periods. As we head into what may be a tough winter for many, just a gentle plea to remember to find that grey area, work through it all together, and be freakin’ nice to each other.
All my love,
Aimee
If you listen, the Universe or whatever higher power you believe in is sending you clues.
On the Empowered Wisdom hour podcast I listened to this morning, Molly MacCartney led us through a meditation where we visualized our journey in a literal sense, through this big, expansive field. We were tired. Cold. Hungry. But kept pushing on to the perceived end result, the goal of wherever we were trying to get to. Then we came across a little old cabin. Inside, the fire was lit and it was warm. All of these wonderful ingredients were laid out to make a delicious hot meal. And by the end of the story, you realize that it’s okay to stop and rest for the night, to replenish your body, and maybe fill your heart and soul cup, too, while you’re at it. The end result will be what it will be, and it will always be there waiting. So take the time to stop and enjoy the journey.
“Nature does not hurry, yet everything is accomplished”
– Lao Tzu
This quote comes to me quite often on the little paper piece of the tea bags that I use. Just because it’s been commercialized, doesn’t make it untrue. It is really comforting to me and a great reminder that it is okay to not accomplish everything all at once. All of my health, personal and career goals are going to evolve and work themselves out, and that won’t always happen in giant leaps. Especially with the fatigue that comes along with MS, I am no longer able to push myself as hard as I used to to get to the end of the to do list each day. I hit my wall at about 3pm and just don’t have as many high efficiency production hours a day. I have had to accept this and remind myself that making progress a little bit at a time is better than no progress at all.
This little gem of a quote is about patience, about appreciating and living in the moment. It’s about self acceptance and being kind to yourself. To me it also means you have to trust the process and enjoy it, otherwise you miss out on everything in between if you’re just focused on the end result. Not to mention the stress and anxiety you’ll acquire from fixating on some other place that you are not at yet. Let your destination be a by product of showing up everyday with some heart and intention. It’s okay. You’ll get there.
The card I drew this morning from my Mystical Shaman Oracle deck was “many paths”. Funny how that should come up now while on a global scale, many of us have been forced to put aside a lot of the distractions of our daily lives because the running around to get to the end goal isn’t possible at the moment. It has made some of us contemplate the path we are on, and what power we have over our life experience. As the card explains, “What you bring to your journey is what will determine if yours is a path of suffering, a path of wisdom, a path of bliss, or a path of loss.” Everyone has challenges in this life, and MS, for me, has brought this concept front and center.
Recognizing the beauty and lessons in the journey, and having the patience to let everything unfold in it’s due time has been one of my biggest enlightenments in the past year. Of course I have goals. But, I’ve decided to not obsess about how I get there, or what exactly the end result looks like. Ultimately, I can’t just stick my head in the sand, either, and expect progress. Surrendering to the powers that be doesn’t mean inaction. I’m just choosing to embrace each step along the way, and not worry about what doesn’t even exist yet.
I’ve read many times that getting attached to a certain outcome is a huge source of pain and suffering. Here is one way I convey this concept. I’ve had the Duolingo app on my phone for well over a year now. At first I would go through phases of practicing somewhat regularly, and then not looking at it for months. I realized that my end goal of learning to speak Spanish was actually holding me back. I would practice for a few days, feel good I learned a couple of words, and then scroll down at all of the lessons I have yet to do, and get discouraged. Speaking Spanish was hours and hours and hours away from me! I would think, “this is pointless.” At that rate, I said to myself, when I do the math it’ll take me 2 years to have a conversation with someone. But, I came to realize, if I let that go, and just do a little bit each day, that time passes anyway and all of a sudden I will be speaking Spanish. It’s the inevitable by product without all the stress on my progress each day or focusing on how far I have to go still. I’ve now been doing 5-10 minutes a day for 134 days! And gosh darn it if I can’t string a few words together to make a sentence. This process really relates to life as a whole, I think. I’ve come a long way, and I have a long way to go. All I need to do, is show up each day and trust that I am exactly where I am supposed to be.
Let’s face it, guys. There are a lot of scary things out there. Deadly viruses, murderers, and the like. The fear of failure, that what I am doing is the wrong choice. The reality is, a lot of what I am experimenting with for my health or with other life endeavors might not work out. And that is quite alright, because I can tell you that in all my 33 years of wisdom, that the only guaranteed way for it to not work out, is to not try.
So, what am I looking into next? Breathing. Turns out we are all doing it wrong. Google it, there are a ton of reasons, including immune support, as to why we should slow down, get back to the basics, and make sure we’re doing it properly. We don’t become better humans over night, so I’ll be adding some daily breathing exercises into my repertoire. Can’t be too hard to mess up, right? And it’s something I have to do anyway. Wish me luck 😉
Always with love,
Aimee
It has been evolving over time. This idea of creating my sacred space. Step one was deciding it was important to me. Step two: what does that even mean to me? And thus, what does that look like?
Now that I have some thoughts brought to life, as I picture my space, I would describe it as warm. Inviting. The sun streams through the blinds in the morning and my plants are alive and vibrant. Green and growth are homey to me. I can see the moon peaking over the mountains at night. On a full moon, the whole room glows with magical moonlight. My candles, my small collection of rocks and crystals, as well as a small Buddha token adorn the top of an ottoman I’ve repurposed as an alter of sorts and it has has just become my spot. I do yoga there. I journal. I pick from a deck of oracle cards once in a while when I’m looking for a little inspiration or guidance. My dogs will often join me there. When I think about this place, I am happy.
Your spot doesn’t have to be much. Mine literally started as the only carpeted place in my house that I could physically fit my yoga mat. So the guest bedroom is where my sacred space was born. I pulled an old tapestry out of a box in the attic and tacked that to the wall. I liked the colors. As simple as that and no need to worry about interior design esthics. I started doing just 10 minutes a morning of yoga there and realized the sun is absolutely glorious in the morning. Maybe some plants would like that room. So it became their home, too.
People talk about alters in their “sacred spaces” so in thinking on what I could use for that I remembered that I had an extra ottoman that we weren’t using. Another trip to the attic to haul down the same exact ottoman we have in our living room, to put in the nook by the closet. (Why I decided to buy two of the exact same pieces of furniture is beyond me, but in hindsight they were on clearance at Target, so I needed them both???) Anyhow, the fit was perfect. I had a candle gifted to me by a friend that was poured on a full moon. That went on top, along with a gratitudes journal and a pen from a sushi place back east. I have fond memories of that dinner and time with old friends.
I’ve added pieces over time. A tool box of sorts for whatever I may need in the moment. If I feel like I need to draw or color in my journal, some colored pencils are right there. A small bluetooth speaker after my phone speakers decided to blow out so I can still follow along to guided yoga or meditation. And of course some trusty mat cleaner and it’s associated sponge.
There are many, many books and internet resources if you are looking for inspiration on what a sacred space looks like. But basically, it can look like whatever you want it to look like, and it doesn’t have to come together over night. It will evolve as your inner and outer journey calls for what it needs in that space. A month ago, mine looked like this:
It was mostly dog bodies and beige carpet. I still share that space with my husband’s percussion instruments. And there is a little more color on the walls now. I’ve made it mine.
It was really hard for me to decide in the beginning that creating this space was worthy of prioritization of what I spend my money on. I have always felt guilty about buying the “good” loose leaf tea, or the essential oils that I don’t “need”. Framing and hanging art. Buying the more expensive (and safer) soy candles. Candles in general. It all seemed like unnecessary extras. Buts it’s not. It brings me joy gosh darn it and I finally decided if that peace and happiness that I find there will reverberate throughout my day because of a few material things then I’m doing it. It’s worth skipping a drink at the bar (or at that next Zoom meet up) to look at a watercolor I did on the wall and remember the warm sunny day as I sat there and painted in a grape orchard. And I will have that memory and associated feelings whether I wake up with stiff joints and numb legs or not. Art brings me joy. Plants bring me joy. As do books and tea pots and trinkets or jewelry from my travels. Who in the heck ever told me these things are less important than my well being? Because they really do contribute to a better mood. Cultivate that! And maybe skip the extra double shot venti at Starbucks next time, Aimee.
In a time when we are physically asked to slow down and spend more time at home, I am glad my sacred space has taken root and helped me get excited about my morning yoga and regular meditation routine. These two things alone are what I completely attribute my sanity to through this global crisis. These days, or any days for that matter, we all deserve our own little corner of the world where we feel safe. Just a little place where it is safe to be. Safe to explore your feelings and a mind body connection. To heal. To be joyous. To physically and mentally to explore the inner workings of our mind and soul and come out better for it on the other side of the time spent there. Do what it takes to get you excited to be in that place. You are worth the work, the time and the money to create that space and be there.
All the love from my little slice of life to yours,
Aimee
My friends often ask how I am doing. My family likes to say, “how is the MS?” This post is to let you know that I am doing well. My body has sent me some not so subtle hints to slow down in the past few months, and I am finding many ways to enjoy this collective pause button that the universe has hit on the entire planet. I may be physically distanced from you all, but I feel closer to you now more than ever.
Are you wishing you had the insight to purchase a lot of Zoom stocks before all this went down? Yeah, me too. It has been an incredibly helpful platform to connect with coworkers and loved ones, alike. I was even able to “meet” with my Neurologist on Thursday.
We obviously had a chat about MS and COVID-19. It was reassuring to hear that I am not crazy for wearing my N95 mask to the grocery store, even if I am the only one. I am more likely to get sick because of my compromised immune system. Getting sick is an exacerbation on my body that can cause an MS flare up. And with a compromised immune system, it is probably not a good idea in general.
On a positive note, he said if it helps me sleep at night, there is some interesting research coming out of China and Italy regarding MS and COVID. It is far too early to tell and much more research needs to be done, but for some reason, it seems like MS patients on DMTs (disease modifying therapies), who therefore have a weakened immune system may fare up to 5x better than those with a fully functioning immune system. My doctor thinks this is probably due to the whole cytokine storm effect that COVID has on your body. A fun little video on that and Coronavirus as a whole right here. Per very preliminary results and records, only one person with MS has died over there, and they were untreated with DMTs. My takeaway – and don’t quote me on this – but I am thinking that not having an immune system that can attack with all it’s “A” game might be a good thing in this case. It of course doesn’t explain why older people who naturally have weaker immune systems are dying at higher rates. So, who knows…
To bring you up to speed, I had my first half dose of Ocrevus in mid-February. The second half dose was late February. About two months in and I feel great. While my B cell count was immediately reduced after even that first half dose, it can still take up to 6 or 12 months for all of the old cells that still “remember” to attack my myelin sheath around my central nervous system to clear out. It’s too early to tell what kind of lasting effect this medication will have on my body, so it is too soon for another MRI. Provided things with Coronavirus clear up a bit by July, I will do one then and have another follow up with the doctor. In the meantime, I have to do some follow up blood work to make sure all the levels of all the things in there still look normal. (That piece is magic and mysterious to me. I’ll leave the blood analysis to the doctors.)
My next maintenance dose, as the doc calls it, is in August. And after that, I only need to be attached to an IV all day twice a year (every 6 months.) That is, unless I get pregnant. For those of you who are wondering when little Straws will be joining the nest, know that yes, we would like to have kids, and are finally ready, but don’t want to force it. There are many layers that have gone into our decision to wait just a bit longer (yes, that kills me, too), but right now I am focusing on getting my body on board.
Funny that I never thought that everything wouldn’t immediately adjust to not taking birth control anymore. Almost a year ago I took my last little blue pill, and it was 5 months before I got my period. Another 4 for it to normalize and for me to start ovulating. But in hindsight, duh. I had a tiny pill full of hormones pulling the strings for 15 years. It makes sense that my body had to say, “wait, I have to do this on my own now? Ok, ok, give me a minute.”
In the midst of all that, a turn of events led me to a new neurologist and I ended up on a new medication. There aren’t really any studies on how it effects pregnancy. Plus, Mom (me) has to be in good enough shape to be able to handle pregnancy and the after effects it may have on my MS. Or, more like how my MS will react to the pregnancy. I’m also working through some food sensitivities and a candida cleanse with my Naturopath doctor – but that is a whole different side bar. The long and the short of it is, after discussing with my doctors, it would be best to wait and get some things straightened out first. Then, 2 months after my next dose of Ocrevus this summer, we shall resume operation make a baby in the fall. Maybe. No pressure. Who knows, we might not be able to have biological kids and so we’ll cross all those bridges when we get there. For now, it’s me time.
I continue to do daily yoga and meditation, eat well, and am getting lots of walks in with the dogs. I commit myself to checking a few things off my to do list a day and try to constantly scan for gratitude. Some days I am more tired than others. Some days I have some tingling, buzzing sensations happening. It’s not pleasant, but it’s certainly not as bad as the intense nerve pain I was having in December and February. I do my best to connect with the joy that radiates from within and not base my happiness on external situations in my life. Basically, it’s not always easy, but my baseline is happy and hopeful.
Oh yeah, and happy Easter 🙂 Whether it is the power of Christ that compels you on this glorious day or you throw some respect toward the old pagan traditions of honoring the birth of Spring and mother moon, all the power to you. Take some time today to think about what Easter means to you, and enjoy. Even if it’s just all about that ham, I hope you have a wonderful day.
All kinds of love to you,
Aimee
For the most part, MS hasn’t really been on my mind. I see this as a global problem that I, nor anyone else can escape from. The enormity of it has been quite consuming so far. But yes, there are some nights I wake up panicking because on an individual level I am immune compromised, more prone to upper respiratory infection and would have a harder time fighting it off. I push that fear aside and move on. More appropriately, though, I should be recognizing it. Feeling the fear, dealing with it and then moving on as so beautifully put in the article below.
I have to say, this one is so on point for me! Now and other times, I do that all the time where I feel like I question my feelings. Sometimes I’m scared they’ll overwhelm me if I let them in. I need to let go of that resistance to feelings. I’ve been saying for a while now to feel the feelings for a prescribed amount of time and then move on, and I like how he says this:
https://hbr.org/2020/03/that-discomfort-youre-feeling-is-grief
I often come back to the book the Power of Now. About how the acceptance of the now, doesn’t mean inaction. It means letting go of resistance to be able to make decisions from a place of clarity and for the highest good. I can’t emphasize that enough.
The Book of Joy has taught me many things, but something that particularly resonated with me was that helping others is one of the best ways to defeat depression and feel a sense of purpose. It’s why I thoroughly enjoy being part of Rotary so much and encourage service to others if you are feeling helpless, sad, a loss of hope. Service can mean a lot of things and can be as simple as a phone call these days. Believe me, there are plenty of people who could use some help right now and always, and it doesn’t take much to let them know you care. That can go a long way.
DAILY Yoga has been immensely powerful. It makes my feel better body and mind and spirit. Even 10 minutes a morning makes a huge difference on my outlook for the day. A lot of studios, like my local favorites Meta and Bhava are offering online classes for free and you can find a ton of classes on YouTube. I have tried a few teachers on YouTube and have landed on a favorite, Yoga with Kassandra who just started a free month long morning yoga movement. If you need some accountability, doing one of these challenges is a great way to get started. And they are 10 minutes, not a huge commitment. The ROI is phenomenal.
As my morning yoga practice has grown, so hasn’t the time I’ve been carving out for affirmations, gratitudes and meditation. I’m about to embark on a journey to finding and cultivating more abundance through a meditation group. https://chopracentermeditation.com/ Hope is quite powerful and goes much deeper than optimism as book of joy also talks about. Most people could benefit from a little more of these things. If you are looking for other ways to explore meditation, the headspace app is a nice, general, anti-anxiety fix. And the insight timer app has just about any theme or length of time you cold want. I love that I can sit down and say, “hey, I’ve got 5 minutes and I need to slow down and recenter.” Or, “That was a long day, I need to settle my brain down and could use some help relaxing and getting to sleep.”
Follow your inner guidance. I like to be inspired by oracle cards. Just about daily I will draw a card. Sometimes I do more detailed spreads if I’m trying to figure out what to release or attract. They often coincide with what the moon is up to at the time. I realize this might be a bit much for some people, but it’s a framework I enjoy. I don’t look to the cards to answer my “yes” or “no” questions, I put something out there and whatever card I draw makes me do a little soul searching. Ultimately I am making the decisions and it’s fun to see what pops up. It has been helping me trust myself, my intuition and not constantly look for re-assurances before doing everything.
As I often speak about, a connection to nature is quite comforting. It’s vital really. Get outside.
I have found renewed strength in my connections with others during all this. My husband and I have enjoyed the time at home together, the hikes and dog walks that have slowed us down and have led us to some really deep and meaningful conversations. I value the virtual meetings and happy hours. Whether we are talking about the impacts this virus has had on our lives, or just distracting ourselves from it for a moment. I’ve discovered a deeper connection to others and they’ve shared articles or books or activities that are helping them. I feel needed and purposeful when I pass on the value of what I’m learning.
Or, not talking about it sometimes is what I need. Taking a break – no news, no Facebook, no computer time one day a week. I’m still plugged in for work of course, I’ll scan my emails for time sensitive ones and will answer phone calls, but I’m not spending hours at my computer where every email, every article or facebook post, every interaction with another person is a conversation about coronavirus. That one day, I don’t want to call anyone either. I am acknowledging my situation, I am in no way denying it. I am just choosing to not spend time on it constantly. Brené brown has a fantastic podcast on this called comparative suffering and it’s only about 20 minutes. Perfect to pop on while you’re taking a shower or folding some laundry. That way I’m feeling more refreshed to get back at it for the rest of the week.
My dogs are a constant – they don’t care about viruses. They just want walks and hugs and love. And dinner – definitely don’t forget dinner 😉
Blogging – it’s cathartic for me. I enjoy the connections I am making and hope that it is a service to others. But maybe you enjoy painting or just personal journaling. Find time and space for creation and self expression.
One thing I do want to make more space for is creation. Get out those beads and make a bracelet or work on some watercolor paintings. It’s a huge part of alignment/balance and self care. About connecting with your core being and not just what is happening in my body on a physical plane (like my MS) or externally (global pandemics and all).
It’s hard to be healthy mentally if your body is struggling. Do the basics. Wash your hands, eat well, and get plenty of sleep. And always, always, drink enough water.
On the flip side. Self care means mental health, too. Not only is your reality a projection of your mind, but the body will for sure manifest stress and other intangible thoughts and feelings into physical illnesses.
Despite hitting pause on everything, there are external pressures on us right now to pay the bills, our rent and get food on the table. Know that there are local and federal government support systems in place or in the works in the form of small business loans, leniency on evictions, feeding communities, and lenders doing loan forgiveness programs. There are also emotional support systems like Building Hope here in Summit County that I bet your community offers as well. You just have to look for it 💛
And so many times, it comes back to control the controllable. You have more power than you think.
Lastly, I have you all to thank for all this advice. My friends, family and coworkers have all shared much of this with me and I only hope to pass it along so that it may also help someone else. I feel like a lot of this is relevant no matter who you are. And, if you are looking for more during this outbreak on MS related issues, check out the Rocky Mountain MS Center’s COVID-19 resource page, including a really helpful webinar with a Q&A session that just might answer some of your questions.
There is so, so much more I am probably forgetting and I welcome you to share what has been helping you cope. With coronavirus, or life in general.
Til next time, loves. May you be healthy and well – mind, body, and spirit.
Aimee
I have absolutely no concept of time anymore! You with me on that? This global pandemic has been at our doorsteps for some time now. It feels like it’s been a year, but it’s only been like a week. Wait, I looked at the calendar and the first case in Colorado was about a month ago. Hold on, what day is it, anyhow?! Through all of it, a new normal is setting in. At the same exact time I feel like I am constantly making decisions that may have huge impacts or are life or death. It’s exhausting, but I’m doing my best to go with the flow.
This constant in flux motion has had it’s stresses at times. Ultimately, though, I am kind of happy to be holed up at home. I am embracing hibernation this winter and welcome the mandated stay at home orders. At least now I have an excuse. Step one: Be okay with being at home all the time. It isn’t a prison sentence. It doesn’t equate to inactivity or boredom. The alone time has been nice. I don’t know about you, but I’ve had plenty of work, taxes and personal tasks to keep me busy that I have yet to sit down and read a book all day or work on my jigsaw puzzle.
I’ve been taking other steps to reduce anxiety. I am trying to limit my online time lately. I am staying informed but spending less time on Facebook in order to limit my exposure to political or coronavirus posts that raise my blood pressure.
As with my career in real estate, the ability to adapt in this time of great upheaval is crucial. Relating things back to nature is a language I appreciate and understand, so I’ve resonated with a few things that the universe has sent my way lately. And they relate to concept of fluidity in the form of water. I started exploring this idea with a water element yoga class – free online through Yoga with Kassandra.
A chat about the elements and a guided meditation the other night through my acupuncturist, Lynne Drakos of A Balanced Crane Acupuncture, was enormously helpful in settling things down and helping me feel more grounded during all of this uncertainty. You know what will always be here no matter what? Rocks and sticks and air and dirt. Despite current climate change discussions, this earth has been through a lot and will most likely still be here, in some form or another, long after anyone reading this post. It gives me comfort to relate things back to nature, but of course, feel free to use whatever format makes the most sense to you.
I am sure you are getting inundated as I am with emails from various retailers, banks, or your local library about all of the virtual museum tours you can take, art and home projects to do, etc etc. My advice is to take one bite at a time. For me it is so overwhelming to have all of these things to do floating around out there. Even more stressful that everyone keeps saying we have all this extra time. I don’t know man, I definitely feel like the days are flying by and I’m not accomplishing everything I want to get done. So, I am working on picking one theme a day, or a week, or whatever amount of prescribed time feels appropriate. I am making it all more manageable, and just like nature, trust that it will all happen in time. Time itself is a human-made concept. Let go of that. Sometimes I have to remind myself to be patient. To just be.
Lately, my intentions have been centered around adaptability. I look to nature for inspiration – I look for water flowing in the streams when I walk the dogs, I am conscious of how much I am drinking (stay hydrated y’all! It’s important for you health on so many levels), and pay attention to it’s lessons of stillness or fluidity. It’s ability to calm or exert incredible force.
In a practical sense, I have things like Asana to keep long term reminders and work projects organized. On a daily basis, my reminders app on my phone is how I stay sane. I put personal and work tasks in there and schedule them for specific days. It helps me know that I am on track, not missing deadlines, and gives me the ability to spread out certain duties. You don’t have to do it all in one day. It’s always changing and becomes a moving target, so pin down what you need to do and when. You’ll feel better, I promise.
On a larger scale, fluidity has helped me a tremendous amount when it comes to managing my MS. Yes, there are all of the unknowns surrounding my physical capabilities, emotional repercussions, or day to day symptoms.
And, tied into all of that has been my exploration of food and my journey to finding a diet that works best for me. It unfortunately is not as simple as “eat this and you’re cured.” I’ve made a lot of changes over the past few years that have resulted in me feeling much, much better. But I still have a lot of work to do.
I was just reading about the importance of your gut bacteria, or microbiome/gut flora in the most recent issue of Momentum put out by the National MS Society, and the incredible impact that can have on your entire body – your immune system specifically. It is not just about digestion. They still have a lot of studies to do, but when it comes to cancer treatment they have found that different microbiomes affect responses to certain treatments.
It is incredibly validating to read about this because my diet is something I’ve been tweaking for a long time now. The whole goal being that my gut flora is in balance and that I am reducing inflammation enough so that my body can function more properly, or allow my medication to work to the best of it’s ability. As the article points out, “we harbor as many bacteria cells in and on our body as our total number of human cells; that is, we are only about 50% human!” phD and professor at the Weill Institute for Neuroscience at the University of California San Francisco points out.
My Naturopath doctor also told me at one point that we have something like 8 lbs of bacteria in our gut. That is crazy! How can it not have a huge impact on how everything functions? So, in an effort to help my body heal and work better, I decided to delve a step further into what I eat. The various protocols and diets I have looked in to are very convincing and seem to have incredible results. But, we all have unique biochemistry, so what, exactly, will work best for me?
In an effort to narrow that down a little better, I took a blood test that measured antibodies to certain foods and my levels of candida yeast. What the test basically does is tells you what foods your body has a reaction to. Some surprising results came back to say the least. One being that I have an extremely high sensitivity to chestnuts. I don’t think I’ve ever seen a chestnut in person, let alone have eaten one, but hey. I that case, avoiding them should be easy.
Some good news – all fruits and veggies are a go. But, that means loosening up my paleo principals and Wahl’s protocol for a little while. Hello peanuts and peas. On the down side, I was thinking that if I were to eat some dairy, that goat would be better since a lot of people with lactose intolerance can do goat products. The proteins are smaller and therefore more easily digested by some people. Not me apparently. Goat cheese is off the table according to my results, with cow milk not being ideal, and other dairy items like eggs to be eaten more sparingly.
So I can still eat some eggs, but need to alternate my breakfast choices a bit. Try a little oatmeal once in a while and see how that goes. Looking forward to adding some breakfast-ey quinoa bowls to the mix. It is a concept that Wahl’s protocol talks a lot about as well. Variety is the spice of life as they say. You need to incorporate multiple vitamins and compounds on a cellular level, and also shouldn’t be over doing it on items that your body needs a break from once in a while.
I’ve been Mediterranean diet inspired but realized that relying on fish as a protein source can be detrimental due to the high levels of mercury in natural caught fish. Paleo/Wahl’s gave me a great framework and had me feeling awesome. Heck, I’ve gone Whole 30 and eliminated just about everything. Adaptability! Fluidity! The journey isn’t over yet. More recently, I am honing in on what my body seems to have negative responses to. The idea being that avoiding food allergies and sensitivities will minimize inflammatory reactions and strengthen my immune system so that recovery can take place more rapidly. In support, I try to do activities like immune boosting yoga.
Instead of a blanket approach to what has worked for a lot of people, I want to find what works for me. The other piece of my lab work to come back a little high was my candida albicans. Put simply, my gut yeast is a bit high. So, I’m starving it out by avoiding sugar. I’m crowding it out by taking probiotics. I’m sending it a hint it’s not wanted by creating an acidic environment which it does not like. A little apple cider vinegar in warm water before meals does the trick. And, I’m avoiding (now) known food allergens like cane sugar, dairy and gluten to reduce immune response and inflammation. All this to restore a healthy balance to all of that microbiome. Gut health is extremely important.
We’ll see how it goes! Thank you for sticking my side as I flow through life and learn along the way. I welcome your feedback if you have tried alternative or traditional routes to finding balance or have advice on how to adapt physically and mentally to your situation. Global pandemic or not.
All the best,
Aimee
This post is about Coronavirus. (Sorry, not sorry.) But not entirely, so stick with me. At this point I am kind of sick of hearing about it. But mostly I am so very sick of explaining to people that just because they have a 98% chance of surviving Coronavirus doesn’t mean that I do. Or that my grandmother does. And that just because YOU avoid death, doesn’t mean that you aren’t spreading it around to the part of the population that does need to be concerned.
There is of course no reason to freak out. As I’ve spoken about before, the unknown can be quite scary and all consuming. My guess is, the more we find out about this thing, the more toilet paper will be on the shelves again. It of course may take some time to work through all of it, so in the meantime, be patient. Stay safe. Shave your head in case the virus like to hide in hair…Just kidding. Try washing your hands, instead. Something we should all do more of anyhow.
I tend to lean toward laid back, but of course was immediately on alert due to the timing of it all. As it so happens I took my first two doses of an immune compromising medication that stays in my system for 6 months juuuuust before the outbreak became daily news. I have to find humor in that. If I thought I was nervous about taking Ocrevus before…geez, guys. You’re not helping.
I’ll admit. I am worried at times. One of the side effects of Ocrevus is being more prone to upper respiratory infections. Cue the release of a global viral infection that attacks the lungs. Cool. I was a little worried about getting the flu before. Why not add a more severe version to the mix floating around out there. But hey, I haven’t thought about PML in days. Mostly though, the novelty has worn off a little for me, and I am coping by being as knowledgeable as possible and doing my best to not catch or spread anything harmful to others – be it viral or any other form of misinformation.
For me that consists of a lot of hand washing and thinking twice before touching my face. It’s easy. I just pretend I’m on a surf trip in Mexico. The bigger picture of daily life is a little harder. I am not holing up at home completely and self quarantining, but I am conscious of the fact that I need to be more careful and consider what going to the grocery store or large gatherings might put me at risk of exposure to. I’m working from home as much as possible, and If I do go out, I am of course steering clear of people that are coughing or look sick and wiping down the ol’ grocery cart with a few Purell wipes before cruising around with that thing among a group of people that either traveled here or have been exposed to said travelers at work and doing everything else they do in a resort/destination community. At this point it sounds like the risk of exposure is pretty low unless you’ve been out of the country, but as more cases are identified, I’ll be keeping an eye on that and assess how I feel down the road. PS – While you’re getting crazy with all of those disinfection wipes, don’t forget to take a pass over your constant companion once in a while – your phone.
What I find even more terrifying is how quickly people react to everything on the internet. And with such vigor. My goodness, do people get worked up. We are getting a little inflammatory and negative with each other, if you can’t tell, so I am definitely trying to be conscious about getting information from non-biased, accurate sources. I am mindful that statistics can be bent to fit whatever case in point any given person is trying to make. And keep in mind most of what you see on Facebook has an agenda, so maybe do a little fact checking before commenting on or sharing something. There is an immense amount of information out there, the quantity is staggering. Not all of it is quality, and germs aren’t the only thing going viral these days.
I’ve also found that panic shoppers are driven partly by a need to have some level of control. “I can avoid illness with copious amounts of hand sanitizer,” for example. How much hand sanitizer you purchase (until it runs out at the store), is generally within your scope of control. Well, as someone with MS, I can tell you it is not always an easy fix like that. But, I can relate to the need for a little sense of control where you can get it.
So, my post today is really more about that. What can you control in your life when so much of your day is adapting to symptoms or situations you cannot control. One thing that took me years to find out, and was very promising for me, was the discovery of neurological reserve.
Up until that point, I was under the impression that once you have a lesion – once you have that scarring in your brain, it is there baby, and there is nothing you can do about it. Permanent damage. Yes, that is of course a concern with MS, however, I found a lot of hope in the fact that neurological reserve is there to help your brain cope and move around the damaged areas. The human brain is pretty incredible, folks! Believe it.
I didn’t know it, but for a few years that was already my mission. My passion toward feeling better was already heavily tilted toward things like my diet or exercise choices, and to hear from an MS specialist that neurological reserve is actually possible, that my body could adapt and that my symptoms could get better was extremely validating.
Regardless of whether you are dealing with an autoimmune disease or another chronic condition, we are all human and we are all getting older, so starting now with some ‘good for your brain’ habits isn’t a bad idea. Check out this rundown on brain preservation https://www.msmindshift.com/brain-preservation/ and maybe consider following Can Do Multiple Sclerosis for additional information on a variety of topics that effect someone with MS, in all it’s varying degrees. There is so much information out there. Some of it accurate, some not. Some pertains to someone you can’t relate to because their experience with MS has been quite different. Along my journey, I have found that Can Do MS has been a great resource over the years when I have questions or want to listen in to a webinar on a topic I am curious about.
I also cannot recommend the Rocky Mountain MS Center enough for their realistic approach and valuable advice. It is definitely the “real people” connection I have been looking for for a while. Kinda like how some people are handling the Coronavirus, they have a “keep calm and carry on” approach. They aren’t laying on the fear tactics, but they also understand the seriousness of the situation and the colossal impact it may have on your life. I am super grateful to have found them to help me through it.
On a less serious note, here is your Coronavirus humor for the day brought to you by Stephen King because sometimes when it gets scary you need to have a good laugh about it…Stay safe out there, folks. And remember to think with your heart a little more, if you can. When things get a little crazy in life, I always feel better when I can clear the noise and confusion and connect with my core, my heart center. It’s never wrong.
Trees remind us to grow tall, be strong. Yet they are flexible as wind blows through their branches. With solid roots you can weather any storm.
Tied into last week’s post about managing my stress, this week’s extension of that is how hard, I am realizing, it is to put myself first. This journey into what makes “me,” “me” and all of the associated feelings and insights have been really exciting. It may be cold and snowy outside, but lately I feel like this little flower in the photo above. Winter feels forever long, the sun finally comes out and I’m bursting through to shine as bright as possible. Does this process look perfect? No. I’ll always have a few little petals to work on getting upright.
I love that photo from my little garden. That sunflower went through a lot to get to that point. From seed, it had to survive a dry arid climate, the ravenous chipmunks as a baby sprout, push up and get it’s growing done with all sorts of enthusiasm before the short window of the summer is over at 9,000 feet. It brings up lots of feelings for me of perseverance and what it means to grow. In addition to notes about how I’m feeling on a daily basis, I keep a photo journal of sorts and like to pull ones that speak to me for each post. I’ve taken all the photos you see on this blog, all on my iphone, and usually with a couple of dogs rearing to get moving again. So apologies if they are not perfect. Neither am I.
So this whole notion of “self care” and “putting myself first” is actually a new concept to me. Just like “stress” management comes up a lot, I’ve of course heard “self care is important” countless times. It now actually means something to me. In thinking about it, my insecurities and just being what I consider a fairly nice person have probably fed into that. Deep down on some level it never occurred to me to put myself first because I didn’t think I was worthy of it. Don’t worry, I’ve come around to the idea on a conscious level that I am, in fact, worthy of lots of things. One of the wonderful things about getting older is you start to figure out who you really are and start to deal with all of those scars, wounds, and “whys” that you have been accumulating since childhood. Fun stuff. It really is, though, because I am actually starting to figure out what I like, how to get it, and how to not feel bad about doing it.
Less of who I am and my value as a human is constructed entirely by what other people think of me. Which leads to why the “people pleaser” in me never wanted to put myself first. There is no time for that when you’re busy making others happy. It doesn’t even cross your mind. Being nice and bending to what others need has direct positive results in a lot of ways. More friends, more success at home or at work. It makes sense that this positive reinforcement would not force a different action. Add MS as a catalyst, and you’ll get some change.
In December of 2019, and I will never forget it, someone told me, “you don’t have to be everything to everyone else.” Holy fucking shit. Thank you Molly, the spiritual life coach I met with in Florida. I never realized I was doing that! PS – this lady is amazing, by the way. Even “Sage” (the nickname I was given that sums up my more hippy traits) was a little skeptical about going into a meeting with her. But my mother in law and her friend highly recommended her, and it intrigued me, so I went.
It was INCREDIBLE what she was able to intuit and how much she has had a constructive impact on my journey. All in an hour of our time! I am super grateful for her and will most definitely be seeking her guidance again in the future. Curious about what she could do for you? Check her out here: https://www.mollymaccartney.com/. I do not go to church or a therapist. But, I do believe that some sort of spirituality is just as important as eating, breathing and sleeping. Whatever that looks like to you. And life is messy. Even the good stuff. There is so much to be learned from speaking with someone who can untangle it all and reflect it back to you in a way that can help you make the best decisions along the way.
Anyhow, Molly blew my mind. In a good way. I fully believe that putting other people first is why I am good at my job. I am now working on how to still value their needs and concerns, while also establishing healthy boundaries so that I am not sacrificed in the process. There is no reason to believe that the only way to take care of others is by giving up pieces of myself.
Making time and space for myself on multiple levels is one thing. Another layer to that is doing so without feeling guilty about it. Especially in real estate there is always a little voice in your head telling you no matter what you are doing that you should be working. Letting that go has been a challenge. Setting time limits on “me time” and then committing to being fully present for myself has helped. My phone and my emails will be there when I get back. I can’t do everything all at the same time, so when I need to re-calibrate, I need to actually do it and not be thinking about the keys I need to pick up and mail to my client while pretzeling myself into pigeon pose. When it’s time to go into work mode, it’s time to get some things done and stop dreaming about getting into my pajamas when I get home. It is useless to be in that in between phase all the time, never fully present in what you are actually doing. I can genuinely care about others, and actually take care of them better if I’m starting by taking care of the base of the pyramid first, which is my health in body, mind, and spirit. I’m no good to anyone exhausted physically or emotionally.
Flare ups are quite obvious indicators I need to slow down or say “no” to a lot of activities I would normally partake in. They are physical reminders to take care of myself better. I always thought I was doing that, but I’m on a whole new level of putting myself FIRST (not just added to the mix), and also not feeling negative feelings surrounding all that. It is easy to slow down when you’re feeling bad. Your body makes you stop, whether that manifests itself as a cold or a fiery pain in your leg. It’s easier to say “no” to a day on the hill snowboarding if you’re coughing and sneezing or your legs are weaker than normal and not cooperating. But as I come out of a low period mentally and physically over the past couple of months working my way through flare ups and the effects of the steroids, plus Ocrevus infusions, it’ll be hard to keep up that prioritization of myself. I am coming into a phase where I am feeling much better and I’ll need to remember to try and PREVENT the flare ups, not just react to them. My yoga, art, and downtime with the dogs need to be sources of joy, not stress because I’m not doing something else, and need to happen before I can think about the trillion other things that need to get checked off my to do lists of day to day life.
It’s also good for me to get out and see or communicate with my friends and support system. I can’t emphasize enough how important it is to feel connected to “my tribe.” My hockey community, my yogis out there, my biological family far away and my chosen families here in Summit County where a lot of us have landed as implants. As always, it comes back to balance. I just need to focus on the “me” piece of the pie a little more, because really, without the “me” piece, there is no dang pie at all.
I have a chronic disease that dictates what my body, the physical vessel that holds “me” in, is able to do. That can be quite draining on me physically and mentally. I also have a soul, just like everyone else, that is a cup that needs filling. It is all too clear to me now that my buckets drain a little faster than they used to without MS, and that I have to pay attention to them more to fill them back up. I am getting used to that. Embracing it, even. Today self care and gratitude are calling to me. I am listening and I recognize their vital importance to building and maintaining a solid foundation for my best life.
If you have been following my blog, you may remember that I had a flare up in late December that put me on a three day course of Solumedrol steroids to reduce inflammation and calm the searing nerve pain in my left leg. These drugs work by overriding my adrenal gland’s functions to produce certain anti-inflammatory hormones that also reduce activity of the immune system. The introduction of steroids into my (or anyone’s) system requires you to then taper down your consumption of the steroids so that your adrenal gland can catch up and start producing these hormones in smaller amounts naturally again. Otherwise, you go into withdrawals which can include extreme fatigue, headaches, weakness, dizziness etc. I must say that I feel these effects even when following the prescribed tapered doses.
It took me about a month to orally taper down from steroids (thank goodness the IV infusions are over), and I thought I could finally get my sleep schedule back on track, let my hormones get back to regulating themselves, let go of the low level anxiety and exhaustion that comes with the ‘roids. Maybe my husband would stop calling me “Aimee hulk” (he may be joking, but in his defense, I’m definitely not as pleasant to be around on the steroids.)
Then a couple weeks later I went out for a nice Valentine’s Day happy hour with my husband. One cocktail and and one glass of wine later and my body was immediately all a-buzz. The nerve pain was back. It wasn’t going away. Reluctantly, I called my Neurologist and since the steroids have been successful in the past at working to stop the pain, he prescribed them again. According to him, the Ocrevus usually takes about 2 months to start protecting me, so it makes sense that I would still need some assistance from steroids in the meantime.
It is now late February and I just finished ANOTHER three day infusion of Solumedrol, which means getting stuck with needles daily and spending hours hooked up to an IV while the drugs drip on into my system. Within 24 hours there is immediate relief of the most intense pain. Are all my symptoms and tingles gone? No, but the trade off for how my body adversely reacts to steroids is worth the relief from the constant pain and weakness I feel when neuropathy kicks in. I need to keep reminding myself of that the past couple of days while my mood and body recovers from the intense doses of steroids yet again.
Getting through these rounds of ‘roids poses it’s challenges, for sure. They certainly don’t contribute toward a sunny disposition on life or my ability to skate as well as I would like to while playing hockey, but I’m grateful in many ways for the lessons I’m learning about letting go. Yes, the unknowns of this disease or life in general are very hard. But what if it’s okay to be comfortable in the unknown?? A friend shared an email with me today on this subject matter. This guy has some pretty awesome things to say about letting go and about life in general. I look forward to following what Mark Manson has to say. He has a no BS, yet profound and heartfelt way about getting his points across. So far, I think he’s spot on.
In conjunction with that, I had some pretty profound realizations myself sitting in traffic the other day. Per the recommendation of a friend who was also diagnosed relatively recently, I took the MS101 class down in Denver at the Rocky Mountain MS Center. I consider myself pretty well researched in all matters MS at this point, but it was actually a really helpful couple of hours. There is always more knowledge to be absorbed and I learned a lot without getting lost in the weeds on all of it. It totally reaffirmed for me that balance, fine-tuning and tweaking to what works best for me is always the best option.
Stress is particularly noticeable in people with MS because, as they explained, stress is always your body’s number one priority. It will deal with stress first and then move on to other issues it needs to address. In the case of MS, if you are stressed, your body is working to deal with that instead of avoiding the “potholes” in the metaphorical road that is your brain aka the lesions or scarring that are causing your nerves to go haywire.
In hind site, when it comes to travel on the roads that exist on a larger scale around here, any Summit County local knows not to plan a Denver day for a Friday when you will be heading back up the hill at peak rush hour along the I-70 mountain corridor. Well, I didn’t do that. So I had some time to sit in traffic and contemplate. I thought, “Oh my, God. What if the purpose is to just be.” Think about it, why is sitting in traffic so frustrating? Your ego takes complete hold of the situation, you are the center of the universe and you are so much more important than everybody else. It doesn’t matter where everyone else is trying to get to, and all this traffic is holding YOU up from where you want to be. This is stressful because expectations about your level of importance aren’t aligning with reality. On the other end of the spectrum, I understand why people are hesitant to want to think they’re not extremely important. Don’t misunderstand. You are important, you just don’t have to sink to the level of “Nevermind then, what’s the point?” You still matter even if you are not the center of the universe. Of course you do. You’re very important, you’re just not the only one that is. And it doesn’t take something earth shattering like curing cancer to matter. What if your worth isn’t determined by your actions but by just being?
I think a lot about stress management with my MS. It gets drilled into your head…stress management, stress management, stress management. But what does that actually mean? Sure, take a walk, meditate, do yoga. But if you’re just going through the motions that stuff isn’t going to help unless you’re actively sitting with some of these feelings or practicing a connection with what I call my “inner peace pool.” Recognizing what comes up emotionally without getting into analysis paralysis is tricky, but I’m enjoying watching where my mind is travelling as I physically crawl along the highway on my way home from Denver.
I’ve been reading the Power of Now which has given me many great epiphanies, and real life situations like this help me put them into perspective and practice. I do have a choice how I react, or don’t react, to certain situations. It’s really hard in the moment, but as I look back at how I could’ve handled the conversation I just had with my husband a few minutes ago, I’m at least aware of what feelings came up, what I said and how finding my inner peace pool can be more productive for me and those around me moving forward. I’ve got a lot of my plate right now and adding steroids to the mix doesn’t help. I know that can be misconstrued as and excuse, but I think these are important reflections on what is happening and how I can be better at embracing and being comfortable in the now and the unknown. Not doing so is the source of a lot of stress. It’s taken me some time to figure out that the unknown is the cause of some stress, and I tried to account for that by planning and putting reassurances in place. By thinking about it too much. Now I’m realizing that I need to be alright in the unknown. It’s time to pull up a chair and get comfy here. There is only so much I can do by way of controlling the controllable. The rest is up to the powers that be. So, just breath. And just be.
When I walked through my door a few hours later, I rounded out may day with what turned out to be an intense yin yoga class that ended with some releasing meditation. I like the Yoga with Kassandra videos on YouTube. She had me repeating, “I am calm, I am at peace, all is well and I am safe.” It hit me and I cried. Like, a lot. But not in a sad way. In a huge relief kind of way. It is okay to cry out the tension and release the stress! And just because you do that, doesn’t mean you have to live in that space forever. Let it all go for a little while and then move on. Take some time to make space for yourself to stop analyzing and planning and just be. Trust. It is okay and it will all be okay.
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Living life with a chronic illness is definitely not easy. But I do my best to push through all the barriers this illness puts in front of me! In my heart and mind, I believe maintaining a positive outlook on all situations in life will carry us through to much better times! I hope you find the information that I provide both helpful and inspirational!
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