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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…