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So bleeds the red, red rose…

So bleeds the red, red rose…

Dear Diary,

How would I NOT make the very first non-MS blog be about LOVE…
What is love anyway anymore? Is it all the love stories you grow up watching on TV? Is it the mother and father who didn’t stay together? Is it the miserable married people you look around and see every day but they get to check the “married” box? Is it a constant feeling of anxiety, butterflies, and feeling physically “lovesick” all in one? Is it this constant plaguing feeling wondering how one-sided this really all is? Is it something you just welcome in with open arms and with no preliminary interrogation process (pretend “jaded” isn’t a real thing)? Or do you question everything every step of the way ensuring they earn their proverbial stripes? Do you constantly test it? Do you push it away as hard as you can and see what comes back each time? Do you play the game of testing parameters and strength to see how long before it breaks? Or is it simply forgetting all you know and all the past hurt and just allowing someone to take your hand while trusting you will come out on the other side together? I do think it’s rather simple… I’ve just mastered making simple, complicated…
You ever just met someone and they instantly made you feel like every dumbass girlie movie, book, meme, and protagonistic love conquest just literally came to life in your own backyard… I believe it’s called “love at first sight”? Well, I’ve never met this person before… But I’ve definitely heard of them.
When you spend what feels like forever looking for something and never getting it, it’s very hard to accept when that stranger finally does show up claiming to be everything you had prayed for (Hello! I’ve already given up?!?). It is hard to believe the validity and true intent of any and everything you encounter when you have spent more time exploring and repairing broken pieces of yourself than smiling and feeling genuine love with no strings attached. It is questioning the intent and sincerity of every poor soul you encounter and once you’ve pushed them away far enough, saying to yourself-see, I knew it was too good to be true, I knew no one stays forever (insert abandonment issues here). When so many perfect illusions quickly became nightmares that you couldn’t escape, it becomes impossible to trust yourself or your own judgement. And you suddenly realize, it is in the exploring of the heart that the innermost brokenness of someone truly reveals itself (something I myself didn’t even realize and boy, is it just awesome *rolling eyes). I feel crazy at times, most times… And it’s like a trainwreck that I see coming on but just cannot stop. I didn’t realize and definitely didn’t prepare for someone to come into my life and light up my darkness so bright that all of my broken cracks would slowly start to reveal themselves (YOU). Constantly being confronted by the detrimental behaviors that you induce within your own crazy mind (it’s like a mirror you can’t avoid)… I had done so much work on myself in 2019 and although I am prepared to grow and evolve even more with each day… I wasn’t prepared at all for LOVE to unmask so much more untapped brokenness that I hadn’t even uncovered yet (something so good shouldn’t make me feel or act crazy, right?). I really believed when God finally brought THAT someone into my life, it would mean I was ready… I love giving out the tests, not being the one tested.
When you break a bone in your body, it isn’t the bone itself breaking that causes the pain (go figure!)…It’s everything around the bone being disrupted that causes the pain. And after the initial incident, the reparative phase begins rather quickly within just a few days and can last for weeks (months in extreme situations)-and just like that, you are on your way toward healing… When one feels their heart or entire life is broken, it doesn’t quite seem to work in the same simple way. The depths of this type of mending pushes extremities to their absolute limits and this type of mending CAN feel as though the pain you are feeling will never end. I was just telling my mom yesterday that there were many, many, many legit moments in 2019 where I never thought I would ever see another happy day in my life again (and I was okay with that because at least I wasn’t still stuck somewhere I painfully didn’t feel I belonged.) I really felt what I was feeling would never end (and again, I was okay with that because while I felt I was still suffering, it paled in comparison to the misery I had been drowning in for years prior). I was so lost, I didn’t ever think I would be able to find my way. I believed this time had broke me for good and there wasn’t enough glue in the world to ever make me whole again (partial>wrecked). For me, it wasn’t so much the pain of actually losing someone but more so just the utter sense of lost I felt, in the ruins, I was standing there alone in. It was like I had given up on life in general because life’s disappointments had finally become just too much of a burden to carry. Where do you go from here? How do you even begin starting over? When you finally feel you have freed yourself from something so tragic, you never want to allow yourself near that kind of hot fire that once burned you so deeply and left you in complete ruins. This once bitten twice shy attitude of approach definitely bites you in the @ss royally and you take on this persona of constantly being your own worst enemy. It’s a constant state of waiting for the other shoe to drop-but in a bad way. For me, this is the self-destruction phase. Where nothing can possibly be as it seems and anything that seems like remotely smooth sailing warrants some type of self-inflicted drama… Survival mode is a real thing… It’s also really NOT productive so pick your poison I guess, huh?
When you never want to feel certain things ever again, you also prevent yourself from ever feeling anything at all. You are numb and you get comfortable in numb. Numb becomes safe and while you yearn for feelings other than numb at times, the fear of the pain now associated with love paralyzes you and the only thing that comes naturally is putting up defenses that ultimately spread like an epidemic that leaves you in the ruins that you started in. Numb is safe. I recently read a meme that said: “never get so comfortable in pain that you forget happiness is still an option” and that really hit home with me.
I’ve learned I am most comfortable knee-deep in pain, fight or flight mode, and surrounded by drama. Chaos is the only “love” I have ever known… And this isn’t just with the partners I’ve lost along the way, I’m talking this morbid illusion of what love should entail has been my flawed perception my entire life starting with my parents… A little girl who only associates love and affection with tumultuous hurricane-like conditions. Sad but true.
The number one rule to mending a broken heart is to go through it. This is also the most difficult task to do. This idea is as equally as challenging as it is rewarding. To vulnerably allow yourself to feel all the cracks that bring you pain and to then work through them in a healthy fashion while trying to unlearn so many things that while unhealthy, have actually been tools that have helped you through some of your most challenging moments. To explore the deepest, darkest crevices of your own brokenness and truly own the part you played while simultaneously trying to dig deep and also find forgiveness. Forgiveness for yourself and for whoever or whatever has brought you so much pain. Forgiveness for life, so you can move forward peacefully and wholeheartedly.
There is no unobstructed path to self-discovery or healing and while I feel stronger today than I did yesterday (and most definitely stronger than me one year ago), the utter trauma of it all still has a stronghold over me often times taking the wheel. I am happy and I want to remain happy. I’ve waited my whole life for the fairy tale and now that it’s knocking I struggle with allowing it in and even when I do allow it in, I end up kicking it out. I was so afraid to start the story over again but I already like this new story better… I just hope I can have enough faith to allow what is meant for me to find a safe home in my heart without unwarranted evictions popping up sporadically… So cheers to staring over again, cheers to pineapples, cheers to the new chapter, cheers to patience, cheers to the new decade, and cheers to unlearning everything I thought I had to learn…

2020

2020

Every “happy new year” brings many promises of change, a new year to right wrongs, a new year to start fresh, a new beginning and 365 more days ahead of you to be the best that you can be. 365 more days for potential “collisions”. I know I was so ready for 2019 to be over. It’s like subconsciously my mind just felt like I so needed the year to end because I was so ready for a fresh start (I’ve taken A LOT of steps forward in 2019 but I also took a lot of steps back and many of which I didn’t even recognize doing in those moments). I was so ready to move away from the desolation I kept finding myself in the middle of. My mind somehow convinced myself that once the calendar year expired-all my troubles would just magically disappear?!? Placebo, much? I would finally JUST be taking steps forward and no longer allowing myself to regress in areas that get challenging… Even when I am weak. I just felt so down in 2019 in every area under the sun-I just needed that 2019 grey cloud to end… to be over with… to disappear forever… I desperately needed the devil to exit my entire life for good. I’ve never welcomed new beginnings more than I eagerly anticipated waking up in 2020. I felt at rock bottom for the majority of 2019 and I hopefully looked to 2020 to shed some sunshine on my life (I mean there’s no where to go from here but UP?). As 2019 quickly came to a close, I realized it wasn’t just one year that I was anxiously waiting to end-it was an entire decade that was now coming to a close as well.
In the last 10 years, I faced maaaaannnnnny ups and downs. The irony of it all is that I started the decade as a single person (I was actually knee-deep in a divorce by the end of 2010) and now here I was welcoming another beginning of another new decade and single yet again (fucken eh).
I spent most of the last decade in a relationship and while that relationship is no longer, it was no doubt the one relationship that taught me the most lessons, tested me the most, forced me to make the most compromises, caused me the MOST tears I’ve ever shed in my life, and ultimately showed me the most about myself…. I mean, once I realized how much I had lost myself and was able to get back to being my old self… I watched my younger son go from being my brand new baby to an awesome little boy who is now anxiously awaiting middle school. I watched my older son go from being my only child to being a fabulous big brother to being an awesome high school athlete who moonlights as my amazing caretaker who is now anxiously awaiting college (holy shit, just even saying that out loud still doesn’t even seem real to me). I’ve definitely taken my share of losses along with the wins throughout this journey thus far. The biggest “L” in the last decade would have to be my diagnosis that came in late 2017 and like with many of my lower points-I tried to extract as much good out of the low point that I possibly could.
2019 was the year of the pig in Chinese astrology, I am a pig. I was excited and hopeful for what the year would bring. Fortune, good luck, happy vibes, and positivity was pretty much all I was looking forward to revelling in (“those with no expectations will never face disappointment”). I believe when I first read about what the year should’ve brought I was completely excited but as the year progressed I realized it was one thing going wrong after another and any and everything that could go wrong, would. By years end, I realized it wasn’t that the year wasn’t filled up with many great gifts-it was that what the gifts looked like in actuality versus what I expected in my head (they always say expectations is the root of all disappointments, right?) were quite different… Flawed in the beginning but in the end, when I realized what the gifts actually were, I was mind blown. The gifts I received in 2019, the year of the pig, MY year, were life-changing. The gifts were painful, embarrassing, humbling, and ultimately life-changing because it wasn’t a bag of money that just fell out of the sky (since I prayed for help in my financial situation), it wasn’t a man who came riding in on a white horse to save me (I had to WANT to save me), it wasn’t winning all this money thanks to my wonderful gambling addiction, and it DEFINITELY wasn’t any of the people in my life who wronged me- coming back to make amends (closure is owed to no one and more often than NOT, you get over the things that have broken you the most when you have to learn to forgive someone who was never even sorry). It was painful realizations about people I loved and trusted and poor decisions I’ve made living my entire life in fight or flight mode which I don’t know how coincidental it is but living like this triggers your nervous system constantly via the adrenal glands so this did make me question if there was any relation to my MS I suffer from present-day? Anyway, I realize the life I was born into wasn’t my responsibility but how I’ve moved through that life and will continue to move from here on out is MY responsibility and knowing and learning this about myself was the greatest gift I could’ve received… A friendly reminder that everything happens for a reason and everything that is happening is meant to happen and that holding onto things out of comfortability or convenience is the biggest disservice I am doing to myself..
I also decided I wanted to start a subcategory of blogs on my page called “NinjaTaxi Confessions” (same as my license plate: NNJATXI). I figured, I always have MS (duh!) so all of my blogs do not necessarily have to be about MS directly or always about how MS has directly affected or changed my life…. MS is always with me after all, right? Sometimes, more often than not actually, sometimes I just wanna vent about random shit, sometimes I feel the need to just purge what’s on my mind. While MS is always on my mind too, most times I’m just wanting to vent about some dumb shit from work, or someone or something that’s irritating me, or the latest most irritating DM received?!? You know, petty day-to-day shit. So here’s to the new year and cheers to the new opportunities and experiences. 2020, I’m setting myself free… Let’s get it!
-A hungry lion does NOT stay hungry long…

When I got sick, we ALL got sick

When I got sick, we ALL got sick

I recently re-watched the second season of Siesta Key (yes, this is one of my many guilty pleasures) in anticipation for the upcoming season 3. I did remember when I had originally watched it the first go-around that one of the characters’ mothers had MS. Now, being a little over 2 years into my own journey, I was able to relate much differently with what MS moments they did share on the show. I think the biggest relatable aspect is what the mother feels at times-it is a fine line between NEEDING help from someone, WANTING to accept the “help” that is available to you, and NOT feeling like you are the biggest BURDEN on your child’s life (if you are a single parent and your only options for help at times are your children). Dealing with an unpredictable chronic illness on the day to day is tough enough… Without a spouse by your side every step of the way, makes it that much more difficult at times. I don’t know what it is but something about depending on your significant other versus your children/child seems much more realistic (normal) and seems like the acceptance of this help would come with a lot less guilt attached. The scary aspect of re-watching this show is that at the beginning of the season, the mother is still mobile and by the end of the season-she is in a wheelchair. I never like reminding myself of what the worst-case scenario could possibly look like with this sickness (reality>optimism).
I often think about how NOT normal my 17-year-old son’s life is. I watched the show and quickly realized how NOT normal her daughters’ life quickly becomes as well. I felt like I was potentially watching what this sickness can do to me especially with regards to the future (hopefully NOT near future) and it made me worrisome moreso than I already am about how much my son’s whole lives will be impacted by MY diagnosis. It is not normal for a teenager or even young adult to have to take on the position of a parents caregiver and caregiver of the sibling/siblings at times as well. While many children eventually end up the caretakers for their parents, it is very unfortunate for all involved when a child is still a CHILD and has to take on the role as a caregiver. I used to look around and feel bitter because of this, now I look around and know that this is just one more thing, one more tool my son will have in his toolbox that makes up the awesome being that he is and will be to anyone who ends up in his life or crosses his path (finding that silver lining)…
This winter has been kicking my ass! It’s crazy to me that I’ve already been through 2 other winters and yet this winter seems to be unusually hard on me. Its bad enough Vegas winters has it looking like 10 pm when its only 415 pm in the afternoon, but the literal second the sun goes down, it is instantly freezing and almost to the point of unbearable for me (like I have barely been leaving the house once it gets dark). I’ve also been napping randomly-and by random I mean, waking up and then realizing I was in the middle of doing something prior to now realizing I had fallen asleep (thank god I didn’t go turn on the stove or something). This tiny irritating and inconvenient “cat nap” habit which randomly happens and usually unbeknownst to me has actually really helped with my continual energy levels throughout the day which allows me to do things in the day and the night if need be (as long as I’m all bundled up and with hand warmers of course)… Prior to the recent cap nap attack episodes, I was limiting myself to either plan things for that day (to crash at some point meaning the day is over for me as well as everyone involved) or charge up all day and have plans for that night. In the end, I realized I was the one kinda limiting myself but only because I am always overly cautious to not push myself to the limits because of how it affects those around me (no one wants to have a whole itinerary planned and have moms issues ruin it for everyone by cutting the day/night short)…. My son and I eventually came to the conclusion that when cold outside, my body must be constantly working in overtime to keep warm, thus resulting in completely draining me whether I’m doing something or just sitting doing absolutely nothing, therefore causing the overbearing sensation to sleep and recharge. When in Rome I guess…
My family was also here in town for the holidays recently. I was so excited for their arrival and a little relieved as well because at least that meant I would be completely distracted from the fact that I haven’t been single for the holidays in 7 years and I really really didn’t wanna think about this. I always hear how hard the holiday are for certain individuals… This is usually the folks I feel are battling with difficult circumstances behind closed doors but not necessarily the sharing types who wanna discuss it (ie-breakups-financial hardships-loneliness etc). Something about the holiday season invoking deep-seated unresolved issues causing people to feel uncomfortably incomplete and lonely resulting in depression or depression-like tendencies. I didn’t wanna spend my first-holiday alone feeling like this so I mentally prepared myself for everything I felt would be a potential trigger. So we were all just uber focused on decorating the house, gifts for my small ninja and spending much-needed quality time together-that is what he holiday season is supposed to be all about after all, right? But more than anything I just didn’t wanna be so idle that I ended up dwelling on things that throw me into a downward depression spiral. So I was very excited for my families arrival and desperately hoping that my energy levels and walking abilities would allow me to partake.
Everything went great! I was able to hang out with family nearly every single day that they were here, visiting them on the strip, eating at all types of fancy schmanshy places, and gambling till the wee hours (I can’t even remember being awake till 3-4 am for something other than insomnia or MS related). The kids and I had such great opportunity for quality time with each other and with the family and in between it all I was wrapping gifts for my baby. I had a real Christmas tree-first time since 2006 and while it had the least amount of present under it that I have ever seen… This Christmas was truly priceless for us all. I think the experience as a whole was great for everyone (especially ME), my son’s got a break from always having to watch out for me because there were many other eyes to do so, my family got to see that me and my boys do have it all together but were impressed with how well my boys have stepped up with the cards we were dealt, and my family got to experience Nicole 2.0- in its full glory-the good, the bad, and the ugly and that’s what I needed… To realize that everyone is ok with walking slower with me, that I don’t always feel well, that I take many breaks and need to sit often, that I can’t walk long distances, that my legs don’t always do what I want it to, and that now that I have MS, in many ways we all have MS… Or at least have to deal with the circumstances of MS as a unit and that it’s all OK… Everyone is OK with it (so I can go ahead and accept it a little more for myself every day and feel less and less like a burden and TRUST that it is safe to share this with others). I hate having MS, I hate how it’s changed my life, I hate telling people and usually don’t even tell people, I hate how its compromised many areas of my own life but I hate MS the most for the compromises it requires of EVERYONE around me.
I guess I will never truly know if my son’s decision to stay here and go to college was at his own discretion or if a small part of his decision had to do with my condition-whether as it stands or considering future progression. I can’t deny that him staying here for college and remaining living with me excites me beyond belief, not only for my fear of primarily living alone but also financially. But I will always wonder what path he would’ve taken had MS not interrupted our lives at all.

Year 2… Gratitude

Year 2… Gratitude

Thanksgiving 2019… I’m just THANKFUL. Period.

Thankful for all the tribulations-so I could see how strong I really was, thankful for all the endings- so I could see clearly and appreciate and welcome new beginnings, thankful for all the tests and lessons- so I could remember what is truly important in this life, thankful for those around me-so I could stay humble and hungry, thankful to see the light at the end of the tunnel-so I know I’m gonna make it out on the other side. I’m SO ready for 2020. Ready for new beginnings and a new ME. Ready for a fresh start. Ready for the next chapter…
The Thanksgiving season is usually a time for everyone to put forth their gratitude for the every day lives they live and for everything that they are blessed with and grateful for….
Thanksgiving, Novembers’ in general, will forever have a different meaning for me because, after 2017, November forever became the anniversary of when I would’ve heard the worst news ever and when my life would’ve instantly changed forever. November marks my diagnosis anniversary. So while many people far and wide are coming together with their families to celebrate the annual tradition of turkey and expressing and being thankful for all that you supposedly have, November and the idea of being “thankful” in my world is quite different now. While I do participate in the traditional Thanksgiving festivities with my kids and with my family, after my diagnosis my level of thankfulness for the everyday little things that people often overlook has drastically changed. In a weird way I almost started to resent the idea of a “Thanksgiving holiday” because I very quickly realized that the laundry list that people tend to announce that they are thankful for are quite often things that are just sheer luxuries in life (AKA petty shit) and that the reality is that nobody walks around feeling like they need to be thankful for all of the little things that you only realize are big things once your world is turned upside down, once you realize how grateful you should’ve been (past tense) for something that you did with ease once upon a time… When what was once easy everyday things, became challenges you now have to conquer. When every day brings new or different challenges that you are never able to mentally or literally prepare for. When you bypass all the little things that you should actually show grave gratitude for daily but you only realize how detrimental that lack of gratitude is once it has become a luxury of your past… I was once one of those people… now I’m thankful every minute of every day. Thankful for all of the little things. Thankful for all the “wins”. Thankful to have gotten thru errands, thankful to have sat thru sporting events, thankful to have completed an entire workday, thankful when I’m able to cook dinner, thankful to have walked around the mall, thankful for grocery shopping alone, thankful for a clean house, thankful for all the things I am able to achieve that I once didn’t think twice about doing pre MS. Sucks that it took MS to give me the perspective I needed.
Prior to November 2017, I definitely do not think that I was as thankful every day as I am now to just be able to wake up and get out of bed every morning and walk to the bathroom on my own and unassisted. Perspective… This is not something that makes everyone’s “what I am thankful for list” when Thanksgiving season does roll around but in actuality, it is these types of little things that quite often go overlooked that every one of us should be THE most thankful for. Gratitude shouldn’t only be expressed on one day of the year. And for many people in situations similar to myself, gratitude isn’t a one-day-of-the-year kinda thing… When all the money in the world CANNOT change your circumstances… Perspective becomes your best friend.
Moving on, with the 2 year anniversary upon me, I just underwent my annual dose of MRIs. While I still absolutely hate being in that scary, loud machine where I feel like the walls are closing in on me, I was very happy that there were no reported changes. So my initial, year one and year two MRIs are all identical with no changes, no new activity and no new lesions. This is definitely great and exciting news and helps keep my mental part of the process on track just to hear this type of findings. Does that mean I feel exactly the same as 2017-NO, it doesn’t. But it does mean I can continue pushing forward because that aspect is not bringing me down in addition to the actual physical aspects of the illness itself. I can continue to grow and learn and push myself on the path of being a better me-Nicole 2.0. I have never felt more content with life. This isn’t because I have someone by my side or because everything in my life is going absolutely perfect. I am content for the first time in my life because I actually did the work. I worked thru my troubled past and recent heartache and used 2019 to work on myself and to strengthen the relationship I have with myself. I found solitude in things I once thought were completely frightening or intimidating and I found peace and acceptance in my chaotic world. And with this newfound sense of peace and clarity, I was able to work day in and day out on being the best version of myself and I continue to do so.
Everyday with MS brings different challenges. Some days more than others. But every day I wake up knowing that everything we have is a gift and that each moment we experience is time we will never get to spend twice. Spend it wisely…
-“Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow. Gratitude is the healthiest of all human emotions. The more you express gratitude for what you have, the more likely you will have even more to express gratitude for.”
-A man who conquers himself is greater than one who conquers a thousand men in battle… Buddha

Welcome to my World…

Welcome to my World…

Life with MS is a JOB and living with MS is exhausting. It’s depressing and defeating to constantly feel like I am doing as much as I can but still letting certain areas of my life down (it makes things seem as though they are not priority when in fact, they may actually be and there’s nothing I can do about it). Even on the days where I feel like I am winning, I am quickly reminded of an area that is losing at the same time… Letting go of control issues (work in progress), has helped greatly but something about not being able to manage your own exhaustion and energy levels at all is unbelievably frustrating and I don’t think people will ever truly understand that aspect of living with MS until they are actually in a situation like mine (or until they actually take the time to educate themselves and imagine for a moment what life would be like in my shoes OR by just spending enough time with me to experience it in the flesh)… Until energy is actually their currency too, when no matter how much sleep you got the night before, the exhaustion still constantly looms… Until energy is their most precious commodity as well (then you truly understand the disbursement issues, lol)… And you never know when it’s gonna just magically run out and without any warning and overextending yourself is just NOT the same as PRE chronic illness. When pushing yourself isn’t even an option in life no more (at least NOT the kind of pushing yourself that it used to be where you can just drink an energy drink or have some strong coffee to perk up for a few more hours to get you thru-MS exhaustion is so nothing like just being tired), when your own wants and needs take a back seat to the fact that you hit walls out of nowhere and just literally CANNOT go on no more. MS exhaustion is like watching a trainwreck in slow motion (at least that’s what it feels like anyway), where your legs start giving out and walking is completely compromised and walking slow isn’t the only hurdle but now you may be walking crooked and appear drunk, its losing control over the simplest things, vision starts to blur, everything feels weak and you literally want to post up an “out-of-service” sign on yourself… It’s like walking thru the sand dunes in the Sahara Desert with thousands of pounds strapped to you and with every step you take, the exhaustion weighs heavier and heavier until you just can’t go on no more and you absolutely need to just lay down for a quick moment (this is why leaving your comfort zone is so scary since you never know when you will be out and about and regret leaving the comfort zone in the first place). It’s when you cancel something previously planned because you can feel the exhaustion monster brewing up inside, and getting that infamous text like “REALLY?” (as if I really don’t want to go-or as if I really want to have to cancel because I’m feeling drunk exhausted)… and it sucks!!! It sucks that this is my life now, it sucks to make people feel they are not priority, it sucks to constantly make choices that you HAVE to make instead of WANT to be making… It sucks to feel so misunderstood but at the same time, you are so damn exhausted from everything else, you can’t even begin to educate or explain anything to someone… So you let it go, and you just accept.
I do have to admit, overall, I’ve been feeling really GREAT lately. Ever since I started physical therapy, I definitely feel like my energy levels have drastically improved in general (placebo?-I’ll take it either way…). Don’t get me wrong, the day of PT-I literally barely make it home and I definitely can’t make no plans thereafter for the rest of THAT day, but the days that follow are so full of this new glow of energy that it makes it all worth it. I even had my mom dig her stepper from 1992 out of her storage to implement use at home since I do a lot of the stepper at PT. Is this newfound boost of life all to credit to the PT? Who knows? But I do know that whatever it is, I love it! Finding this new boost of energy excited me but it still didn’t change that the reality is that I have MS and so thereby very much so married to every single thing that comes with that…
I still have days where I don’t really leave my bed too much (most days actually)… Especially after a long day or late night but I’ve definitely been pushing myself more in all areas and I one thousand percent feel this is helping with my overall mental and spiritual well-being greatly! My bad days no longer result in bad daySSS that turn into “I’ve been in bed for 5 days” or “I haven’t left the house in a week”… I guess that’s a start. But then a day like yesterday happens where technically I got everything I needed “checked” off my to-do list and I was still somehow reminded that no matter how accomplished I may feel, there are still areas of my life that are lacking just because of the constant battle with fatigue. Getting “thru” everything that is priority-work, kids, errands, house chores, dogs… and still hoping to have enough energy to spare to come home and get dolled up for a night of fun is a thing of the past (I try when I can but more often than not, I end up choosing my comfort zone and believe me, I do wish more than anything that I had someone to share my comfort zone with…). I barely make it thru the “everything” part on most days to be completely honest…
Resilience… What does resilience truly mean anyway? And does resilience always go hand in hand with acceptance? I guess it does for me… Resilience grew a whole new meaning to me after MS… and continues to loom all around me every time I have to just be OK with something that I don’t really want to just be ok with. I’m a fighter, I’ve always been a real go-getter but none of that is applicable with Nicole 2.0. Acceptance, every time I have to act like I’m not just as upset as the next person that I can’t walk faster or that I have to cancel something that was previously planned and now I appear as a flake or that I just always seem to be “too tired” for EVERYTHING. There’s that saying “You don’t know how strong you can be until being strong is your only choice”… Or something like that. Well, strong has always been my only choice (hello, I was a single teen mom) but being MS strong takes on a whole new meaning. MS strong has made me have a much stronger faith in realizing and accepting that everyone in my life won’t stay in it, that every person I do share my journey with still won’t always understand it or maybe they won’t be accepting of it and the lifestyle it demands, and that no matter how much I want certain people in my life or to spend time with certain people, this is MY life now and it truly is what it is. My life now requires a get-in-where-you-fit-in attitude and my loyalty can no longer be measured as to how much I can “show up” for someone or for things because unfortunately my illness is in full control of that and I have accepted that and whoever ends up in my life will have to accept that too. Having an invisible illness is extremely frustrating and tests you every single day in every single situation. Stress is the biggest NO, NO with MS therefore by default, acceptance had to become my best friend. This MS life is like plugging your phone in constantly but it never really moves from the battery life appearing low in red… Like filling up with gas and the needle never really moves from E…