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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.