Sadness is not good for the sickness, yet the sickness brings me so much sadness.
It’s so crazy how you can have so many good days and one bad one can take you all the way back to level one… Erasing all the progress you feel you have made… Leaving you feeling defeated yet again and desperately searching for the strength to avoid the rabbit hole of self-pity. It’s like when I forget to collect my daily rewards on Candy Crush and when I finally do log in-I’m back at day one-the starting line… It’s like working so hard to take those 10 steps forward and in an instant, falling 20 steps back… and desperately trying to remain motivated to keep pushing forward for another day.
Every day there are little reminders that remind me of a forever changed life (not just the no wearing heels part). Little post-its that metaphorically pop up everywhere throughout your day as subtle reminders that even on your best day/days this monster is never really gone and is always inside of you. Waiting… Always reminding you that it comes with the package (as if two baby daddies are not enough baggage to come with…) So, while you have done a great job at presenting your best self for someone, at some point you will be forced to open up your worst side so vulnerably. You have to disclose what could be the stop-everything-in-its-tracks deal breaker… Your dirty little secret will have to surface eventually-hi, I have MS and if you decide to be with me, it will feel like WE have MS.
Being naked is no longer the most vulnerable position you may find yourself in with essentially a stranger, now it’s sitting them down and trying to portray that you may LOOK fine all the time, but things aren’t always as they seem. It’s a morbid idea of almost talking somebody out of wanting to be with you and listing all the what-ifs that their future could hold and then asking if they still wanna sign up… It’s literally like talking someone out of wanting to share a life with you because you are so afraid of that getting taken away at some point once you’ve already become reliant on their presence in your life and you just don’t know how to allow yourself to let yourself get caught with your pants down again and stuck standing there, ALONE, looking at the ruins that you are once again surrounded by… You never want to start anything (relationship included) out of fear of failure because dependency takes on a whole different form when someone takes on the role as a caregiver. Your caregiver. You lose faith in people and in their words and you learn to depend on no one except those within your safe zone (this also prevents you from wanting to share or open up with anyone but those marked “safe”). You also don’t know how to let anyone new into the safe zone (circle of trust). And while every break up/failed relationship or idea of starting over can be detrimental in general, dealing with heartbreak and relearning to do everything for yourself when you’ve lost a critical caretaking piece of your day to day life is absolutely devastating and puts the pressure on those who remain around you tenfold (this was my 2019). I know I don’t want to put myself through this ever again nor do I want to subject my sons to this rebuild process ever again. I don’t know how to love without an insurance policy.
It’s the looking at someone who is telling you everything‘s gonna be OK but at the same time nobody knows what the sickness will bring in the future therefore nobody can say that you will be OK and is it my own insecurities that wants to push everything away NOW so that I don’t have to experience loss later when I’ve already become dependent or is it that I truly just feel sorry for someone thinking they wanna join this party and their kind, naïve nature that thinks they want to sign up for something and they really have no idea what it’s actually about. How can someone say they are willing to sign up for something when no one knows what it will truly bring? How do I believe any of it? What would it take to make me believe any of it? I don’t open up enough about the day-to-day struggles. I find it much easier, maybe it’s even a little deceit on my part, but I find it much easier to pull myself together and be my most presentable self for those few moments that I do share time with people outside of my home (get dolled up for isolated nights out here and there) and when I find myself having bad days or bad moments I go back into my little hermit shell and shut off from the world, not wanting to share that side of me with people, not wanting to explain all the weird things that are happening that I myself don’t even understand and definitely am not wanting to think about this being forever and possibly progressing to a more severe physical state down the road. No one can tell you they will hold your hand thru whatever life throws at you when they don’t know what life with be throwing right? How do you just have faith and trust someone’s words? You don’t… sadly, if you are broken enough or have been broken enough, the reality is you believe nothing. The reality is that if forever was meant to find you, it likely would’ve by now, right?
Is it a lack of trust I have in others that makes me question the sincerity in their words or is it simply the disappointments of life that has given me no faith in the longevity of anything including long-term relationships with other humans?
There are a number of awkward moments that two people will encounter at some point when you just start dating someone… Who wants to add onto the pile of awkwardness by inserting here I have a sickness and I never know how to warn you how to deal with it because I never know what’s coming and I don’t know how to warn myself of what tomorrow will bring or the next day or the day after that. And I definitely can’t tell you what 5 or 10 years down the road will look like with me… And I swear I’m not flaky and I know that I look normal but if I’m telling you I don’t feel right then please believe that I just don’t feel right and I don’t know when I’m gonna feel normal and I don’t know how to deal with what I’m feeling in those moments in any other way but how I have been dealing with it (420 all day). And that’s not really what I would consider “presenting my best self” either… The slope is unbelievably slippery, figuratively speaking.
Who wants to appear flaky and unreliable or possibly even disinterested in the very beginning stages but at the same time who wants to fully disclose what bad days truly look like or how you individually may choose to cope with your bad days… #ijustmedicatetothehighheavens
And even though medicating relieves me of some of the other ailments I may be feeling or dealing with, it is still not the state of mind you want to be around someone in especially when it’s still the beginning and you’re wanting to always put your best foot forward at any moment. Dating is for being cute and bubbly and experiencing all those awesome early stage butterflies and not for being transparent about an illness right out of the gate, while full of anxiety that something is gonna go wrong at any moment and you will be forced to share your secret anyway… but at the same time, I cannot just continue NOT telling people and then it’s a feeling of this constant grey cloud looming over everything because then I feel like everything is a lie. After all, a very critical piece of the pie is missing. So while everything may appear to be going well, I know on the inside about my dirty little secret and that it will surface eventually… I guess I just go off of vibes and however I’m feeling in those moments. Some people do make me feel comfortable enough that I can attempt to open up to them about something that still isn’t very easy for me to talk about (why I blog) and then there are just other people that I just don’t think that they would receive what I’m saying in a way where the feedback could give me the confidence that I’m yearning for or that it doesn’t change anything or the way that they look at me and then I am unable to bring myself to share anything with them.
I realize more and more every day about things about myself and also about some of the relationships I have been in, in the past because of the person I may have been in that chapter or that particular period of my life.
I realized just yesterday actually, that telling someone you are sick and having to explain that whole charade to someone brand new who’s looking at you look completely normal is way different from actually getting sick with someone from diagnosis. We took the initial hit together and we experienced all the changes overnight together both physically and required lifestyle changes and everything that I had to learn, WE learned and I got to learn with somebody by my side instead of now I’m just the teacher trying to explain intimate details of a part of me that I, myself still struggle with accepting wholeheartedly that all this shit really is a part of me forever . I realized why staying in a situation longer than I should’ve was easier for me to validate in my head back then, it was probably because subconsciously I knew not staying in that situation would leave me where I feel like I am at right now.
I feel like I’ve spent my entire life teaching people how to love me in my complex and dissecting true nature (make it make sense) and it got exhausting and so I gave up and just totally surrendered to being single and taking on the treck of life with MS alone just with my kids by my side. Now I’m realizing even the thought of being with someone, present day, will still require an immense amount of teaching… the only difference is now the energy and time I put into teaching someone will not be as easy to walk away from because the investment got much more costly for me. How can I dedicate time to teaching someone and showing someone all the intricate parts of my insides when I don’t get the crystal ball guaranteeing forever will follow suit?
I’ve realized even the very things that we may have prayed for, we may not be prepared for and this was truly eye opening for me. I guess I just always imagined things I prayed for arriving and everything else just being easy, everything just fitting, everything falling exactly into place perfectly… like the fairy tales? I guess it just didn’t dawn on me that something I’ve prayed for would still require work and would still challenge me constantly.
It is hard at times to not think: Is it my destiny to come up the runner up in the fairy tale? Was forever never meant for me? It is only through enough devastation, disappointment, and desolation that you start to really believe that maybe all people are not meant to have someone by their side through every chapter despite how amazing the warm and fuzzys feel when you do temporarily have that role filled.
The universe doesn’t always play fair, but it does have a sense of humor…