live through this and you won’t look back

It’s ok to be. It’s ok to live.

“Value” and “worth” are for objects.

People and beings and aliveness doesn’t have a price or an output amount to get to live life.

We are here and that gets to be it.

No price to pay, no trade off.

Despite what they all make us think, there’s no tolls to pay for living.

None of us asked to be here.

It’s ok to be. It’s ok to stop proving yourself. To stop spinning. To stop being whatever you thought they needed you to be.

Because now it’s my body that must come first and everything else second.

And that’s how it is. Despite what I learned as a child. The rules are different now, because the rules never were what I was taught.

So I get gentleness and sweetness and coaxing to my own self.

Now.

It’s funny how life happens and how you begin to see yourself

This may be the longest stretch of consecutive time I’ve gone without writing or blogging or micro blogging documenting my life via words. I have instagram but it’s not much of anything lately.

The idea of that makes me smirk so I must be doing something right by myself. I was never really private, that’s for sure. And this isn’t so much privacy as a lack of words, which is even more strange. And it’s not even a lack of words as my brain is constantly talking to me, it’s a lack of energy. I don’t have the spoons to communicate like I used to, and so. I’m quiet, even in my more “private” places, I’m not even writing in a journal. I am making art and that’s better anyway.

Spoons, I’ve given into the lingo because it’s what’s available and understood. I don’t have the spoons to create and explain something new.

Some life updates: I’ve been “discharged” from PT for my head/neck “upper crossed syndrome” issue. I got to ring the bell! I never got to ring a bell before! My range of motion in my neck/shoulders is much improved, and getting back the hour 2 days a week is needed. It was a lot for me. But I have to keep up with it. I’m just so tired all the time.

FFB has built a gym in the garage and that helps motivate me to keep up with the exercises. He’s wonderful. We have had a lot of 1on1 time and dates lately. I’m soaking it up. I’m leaning into fun and pushing myself a little especially since gaining some functioning in PT and being in some less daily pain.

I completed another year of art classes and spent the last 6 months in an independent studies class where I worked on my own ideas along side other artists working on their own ideas, and I’ll tell you what, it’s been so cup filling. And my mentor showed me how to take proper photos of my art and I have every piece in sleeves with glassine and in an artists portfolio, all pieces together I’m really proud of how I’ve grown and the collection I created. And I now feel more confident in my “voice” as an artist and what I want to work on next.

FFB and I are going to a BBW “lifestyle” event in Vegas in July 🤣 and tbh I’m so excited. One night is “y2k” night. He’s wearing pucca shell necklace and popping polo collars, I’m going to do layered tanktops punk sk8r grll w a tie and wrists full of rubber bracelets

The morning I started this piece, a teenager had jumped in front of the redline.

I had told my art class instructor, in case anyone was late. Trains delayed. Ride share surges. I saw it on Alderman Maria Hadden’s ig, or I wouldn’t have known.

I remember she said a teenager. Prayers to their family. Prayers to them, too, I thought, several times, wherever their soul is.

I remember learning about the phenomenon of jumping in front of the train to commit suicide. I hadn’t been in Chicago long, definitely was 18. It became my fantasy “out” for a long time. My just in case plan. My uncle had been killed in a freight train wreck, what an homage, I thought. Oh to be remembered, to mess up so many people’s day, I would think, at least I’d get their attention for a moment, their prayers for a minute. These were my thoughts years ago. When life was simpler-darker. Not complex-dark.

The composition on this piece got all wrong, it was supposed to be more of “looking through” the tree, and that’s not what’s happening. It’s ok, it’s my first attempt at something so structured and industrial with oil pastels. I typically stay very nature-y. I did almost all of this free hand and cleaned it up with a straight edge, but the front proportions aren’t exactly right. I tried using some color trickery to give it the curve, but I’ll be making more with cta cars soon, I like what’s happening here. In the original photo I took, I could see the orange stocking cap of the train driver, and there’s a bit of a nod in there.

My body has finally adjusted to FFB being back home. Sleeping together again is still rough but everything else is adjusted back to comfortable or enjoyable or neutral. He’s gone again this weekend, and tbh that helps. He has a bunch of travel this year and it works out. I get I space and rest. We get fam time (w Buck) when he’s home.

Me and my best boi in my place of zen.

So now I’m back in PT 2x a week working to correct all of this bs. I know it’ll help, I’m in so much neck and shoulder pain. I’m just so very very tired all the time. Getting the help, doing the things, because eventually it’ll lead to an easier and less painful life over all. It’s PT Monday and Thurs. Art Tues. Therapy Wed. Rest the other 3 days. Disabled life pacing, still doesn’t feel like enough rest.

And my body? Well my body is in rough shape and she’s stuck in a survival cycle and she’s just afraid all the time so it’s a lot of talking myself down out of panic spirals because I’m triggered so often.

I am so tired.

Therapy was great today, I saw her in person to help myself ground. I cried most of the time, and I talked about how sick I am of the crying. It’s always been there, the crying, bubbling under the surface. She asked if it’s new with this round of being upset or grief I said nope, same as it ever was, the feelings are so much and just a few heavy feels away from bubbling over and then I told her about the Reddit post.

One of my neighbors posted in AskChicago Reddit about my crying on my patio and how loud it was and how long I went on and asked if they should say something to me.

My therapist busted out laughing. We spent the next 10 minutes bawling laughing about the whole absurdity of the whole thing cuz I realized I hadn’t even told her about it all yet, I hadn’t told anyone about it.

I didn’t realize how bad it was, or even that it was so present.

My period came way early right exactly with Aries szn bc of course happy new year

I’m distracting myself with weed and baseball it’s what I have food isn’t appealing at all

That I have learned from my care team:

—it’s categorized as an autoimmune disease. Which is a huge category of illnesses, that’s the umbrella long covid falls under.

—everyone being treated for long covid has problems with pacing, fatigue, and energy

—seem to be two “types” of long covid as far as recovery times, those who improve after 3-9 months, and those who report a more “up and down” kind of “non-improvement”

—the non improvers are more likely to be women, in their 30s, who never fully regained smell/taste

—there are Rx options we are trying that are helping with some of my pain! I’d say even more than some of the things my other neurologist is trying for my headaches.

—my long covid neurologist put me on 10 mg of nortriptyline on top of my other headache meds and psych meds to help with my long covid headaches, and I’ve definitely noticed a difference. I might be able to up that.

—we are going to try a stimulant as well.

—she is also able to give me a refferal for hydro pt (pt in a pool!) but I am just not able to do that until FFB is back for a few weeks I don’t have capacity yet. She said a very low impact exercise plan like that is good to help rebuild your strength, and tbh I need that. What happens is I stick to a routine really well for a few weeks and then I get a pain flare up and it all falls apart and fatigue flare up and it’s all of the sudden 2-3 months without working out. I do walk buck 2 walks a day so I do move, but it’s not enough nor is it strength training or the stretches or cardio I need but I don’t have any more in me. And, I’m glad she’s giving us long covid people this care. We need this, our reality is we have lost muscle mass!