Blogging · SL Survival Guide

16. How to… Keep that positive energy going

So, here’s the thing…

… I’m fucking exhausted.

Bet you didn’t think that was how this one was going to start out, did you? But, truth bomb? I have Cerebral Palsy in real life. A person with CP expends 5x the energy of that of a normal, healthy person simply to get up and move every day. I’ve been doing yoga in the mornings because as a person with spastic quadriplegia (don’t freak out, y’all – that just describes my type of CP – it means the muscles in all four limbs are spastic – tight, hard to control at times, etc) it helps me stretch things out, and I’m trying to lose a little weight because I’m used to being in the 135 range and after two years on anti-seizure medication (thanks again, CP) I am nowhere near that, and that’s fucking depressing to me. So, by the time I sit my happy ass down at the computer in the morning, I’ve already, at the VERY least:

  1. Gotten up and dressed.
  2. Taken the dog out at least once.
  3. Had a cup of coffee because #2 is exhausting
  4. Done some yoga in the living room and
  5. Drank about two glasses of water and another cup of coffee because #4 kicked my ass

So, by the time I log in, I’ve already tossed about 2/3 of my allotted spoons for the day into the garbage. If you haven’t heard of the spoon theory, it’s a popular euphemism in the chronically ill community. Quick and dirty? Let’s pretend you have a handful of spoons, and that every time you do something each day, you have to hand some of those over. Certain actions will cost you more spoons than other actions. So let’s say you intend for your day to look something like this: shower, exercise, clean the house, walk the dog, go out to lunch with x, walk dog again, cook dinner. Simple, right? Nah. Not for everyone. Let’s say you have 16 spoons for the day. It takes 1 to shower, but it takes 6 to clean the house. Walking the dog? We’ll call that 4. Exercise? A solid 4-7 range easy, depending on the day. So by the time you reach lunch time with your shitty coworker who wants to spend the entire time ignoring her salad and bitching about another coworker, you’re on fumes if you’re lucky, and ready to guard what remains of those spoons with what remains of your shitty amount of energy. If you did the math: Shower (1) + exercise (4 ) + clean the house (6) + walk the dog (4) = 15.

“Well holy shit, Nova! You’ve not even made it to lunch and you’re already almost out of spoons!”

Yep. Every single fucking day.

We won’t talk about how many spoons going out to lunch would take, or making dinner, because the truth is, there is never a day where you don’t run out unless you spend it in bed watching Outlander re-runs and literally do nothing else.

I used to have a lot more spoons. See, Cerebral Palsy is mainly studied in children. Back in the day, certain forms of it were even called something like Little’s Disease. That was over a hundred years ago, but I wish I was joking when I say that it’s still only widely medically covered for children. My 32-year-old spastic hypertoned ass has to weeble-wobble in to a pediatric specialist to this day because unless I hop on a plane (lots and lots of spoons) I can’t GET a specialist who knows about CP and treats adults. It’s as if a large portion of the medical community only gives a shit about us until we’re 18, at which point we’re fucked, even though CP, which is caused by a brain injury at, before, or shortly after your time of birth, never goes away. Some doctors who probably shouldn’t be doctors will say that because it’s essentially caused by a TBI, it doesn’t get worse, because the initial brain injury doesn’t progress over time. But guess what? Children grow up. And children with muscular malformations and other issues caused by CP who GROW (and everyone grows, duh) are going to run into further issues down the line.

So yeah, I used to have a lot more spoons. I also used to be able to run a mile in 9 minutes, work as a lifeguard, bench-press twice my weight, and participate fairly actively in whatever fucking activity I wanted to try in my local munch group, because as you may have figured out by now, I am one of those people. But I’ve lost some spoons as I’ve aged. I’m not old, but I have end-stage arthritis in one of my ankles, which essentially means there’s almost nothing left of the joint. That comes from years of surgeries, or botched surgeries to try and “fix” issues that have come up as I’ve grown. So these days, I don’t run anywhere, I can still swim, but I would never trust myself to lifeguard, and I enjoy some of the activities I used to love in the real world through SL now, because some of them would be literally dangerous for me at this point. So I have a hell of a lot less spoons than I used to have, and I’m pretty damn protective of them, and I’m fucking exhausted.

SL is my getaway. I can’t drive. I’ll go out to dinner on occasion or meet up with friends if we plan things out, but I’m that friend. That friend everyone wants to invite but everyone also knows that someone has to be responsible for because she can’t drive, and forget it if there’s ice on the ground because if she falls when she’s out with you she could break something and end up in an actual fucking wheelchair and that’s scary, so we should invite her but it’s probably easier for her to stay home, right? So like… SL is my happy place right now. I can take pretty pictures and make pretty things. Nova’s legs may be made of fucking pixels, but they’re perfect, and she can walk and run and do all the shit that I can’t do anymore – including socialize regularly. And if that sounds sad, it’s because it is, but I don’t really care. It is what it is, and I’m doing what I can do to make things better for myself in the real!world and trying to enjoy SL while I do it.

…and yet sometimes, I will go entire days without hearing anything positive. At all. And I’ll smile and nod because what else can I do but smile and nod because anything else would take way more spoons than I’ve got for the day? Energy is difficult to maintain.

On Sunday, I was elevated in my community in SL. I got my Seraph tag. Most of you don’t know what that means, so I’ll keep it simple. It’s the highest honor someone in my position in my community can achieve, and it takes work. I was even more excited to learn that a friend of mine was going to get to introduce me. She’s a new friend, really, but someone who has been around the whole time. We just recently started talking and realized hey, holy shit, why haven’t we talked before? And the speech she gave about me was wonderful. I cried. I cried because it took so much time and so much energy and just so much everything to get to that point, and the ceremony was beautiful, and then this wonderful person stands up and talks about me like I am the coolest side of the pillow and the sweetest candy in the candy shop, and I lost it. And the last couple days, I’ve been on cloud nine about this new tag, and I realized this morning that on days when I feel like I hear nothing positive at all, I’ve still got friends like that who know how it is and know what’s going on who have a hug ready, or something to make me laugh or smile just for the hell of it, and that’s so fucking worth it.

So, the moral of this long ass story? The truth is, it’s not possible to be Mary Poppins all the time. I wish it was. But when you can’t, or when you feel like you’re surrounded by bullshit and wading through it would wreck your day and ruin your shoes, just remember that you don’t always have to. Surround yourself with good people, give yourself a fucking pat on the back because sometimes shit is just hard and that’s okay, and kick some ass tomorrow instead if that’s what you have to do.


[Shape][Divine Transformations]Nova Shape **custom**
[Head][LeLUTKA]Simone v. 3.4
[Body][Belleza]Freya 5.0
[Hair][Tram]I1126b hair (Hud C)
[Skin][The Skinnery]Paris (Toffee)
[Top][Vinyl @ N21]Peel Sweater (Navy)
[Pants][Vinyl @ N21]Tustk Sweats (Black)
[Shoes][Agave @ N21]Stowe Sneakers (Black)
[Decor][Kalopsia]Kali’s Yoga Set

[Pose][Del May Poses]Dawning
[Tune][Missy Elliot – Work It]

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