The Unknown

{this post will be mostly stream of consciousness, basically a journal entry, but hopefully some meaning will come out in the end}

Yesterday I took an unexpected 3 hour nap. Woke up a few hours from when I'd typically go to bed, disoriented and then upset once I realized what had happened. I'd also fallen asleep on my office floor earlier in the day and nearly missed a meeting with my boss. I didn't feel sick but was so exhausted I was struggling to stay awake. Woke up this morning crying from pain and found myself in one of my worst fibro attacks in years. It seems my body was preparing to fall apart. 

Though I live with incredibly high pain levels daily, it's these moments that really scare me. I have to remind myself of the words from my former rheumatologist, "The good news is you don't have a degenerative disease so this won't get worse." Oh won't it? This feels much worse. And then the next sentence he said, "The bad news is there is nothing we can do for you." My eyes are welling up with tears to see those words again.

That was roughly 10 years ago when I stopped seeing doctors and began my own plan to keep myself a functioning member of society. Through a massive amount of attempts through chiropractic, acupuncture, every herb and supplement imaginable, food eliminations, massage techniques and anything else suggested I've mostly come up with a way to keep upright. My current self made program is basically yoga and weed daily. The yoga keeps me mobile and helps to keep my crazy tight muscles from spasming further and the weed calms them at night. Still in enormous amounts of pain but this allows me to mostly live the life I want. 

As I sit here today feeling like I just got out of a prison brawl I'm so sad. Yes, I just said I'm able to live the life I want but not really. There is so much I used to do that I can't anymore. My eating disorder will scream at me sometimes as it's freaking out that I'm going to gain weight as I can't over-exercise like I used to. (and already being at least 35+ pounds more than my lowest, though that wasn't healthy, it scares me) I see pictures on Facebook of people running, doing kettle ball classes, and working their bodies hard and I sob inside as I'll never be able to do that again. I live in a delicate balance of working my body but it can't be too hard or too much or this triggers an attack. But I'm one of the lucky ones, or perhaps it's my tenacity, as I'm still fighting to keep up.

The unknown is the worst part as I fear the day I might not be able to fight it like I have for decades. I live alone and I get worried that they day may come that I'll need help. I don't like help, I don't like dependence, and I don't like feeling needy. I've established a firm line where I'm the one who helps and not the one who needs it. The unknown terrifies me so I create this existence where I work to control everything. As a yoga teacher I tell people to "be present" and find gratitude in the moment, all while I'm stewing internally as to how I'm going to make it.

When I step outside myself I do know that we're all living in the unknown and not truly in control. As one of my favorite sayings goes, "We're all flying on a rock through space to our death." I don't want to live in the present moment, I want some assurance I'll be OK, and there is none. 

I was looking for a cute way to tie this piece up, with a quote or something hopeful, but I don't have it right now. I'm holding back tears, popping some muscle relaxers and berating myself for feeling more than a little sorry for myself. (deep heavy sigh) I'll live though. I'll find a way to make it. I always do.

Unsteady

With temperatures hotter than even this Southerner can take, I spent the day without a plan. Now I know most people love nothing more than to have an entire day with no obligations. Being unscheduled messes with my mind as I start fearing I've missed something, am wasting time, or becoming overwhelmed with being alone. After going out for a few hours for a writing group, wasting a ridiculous amount of time online shopping, making a note to read a book and then not doing it, I felt a strong urge to do something I'd avoided for some time. Some time as in years. 

When I first bought my place I also bought a little patio set. It was black with red cushions and I loved it. I needed to call where I bought it about an unrelated problem with something else and they asked if there was anything else they could do for me. I offhandedly mentioned that the table on my patio set was unsteady and that I was using a piece of cardboard, "grandpa style", to even it out. I went onto say it was likely my error though I'd tried really hard and no big deal. She said they would send me out a new set with their compliments and to keep the old one. What luck! The new set arrived and knowing how long it took me to get the previous set together I put the box in storage and vowed to put everything together the following year. It didn't happen. Added the task to one of my many lists the following Spring, and due to the circumstances at the time I was too overwhelmed to consider it. Finally the Summer of 2020 arrives, pandemic, stay home, perfect time to accomplish all you've put off. So I put together one chair and once again called it quits. 

As I was shopping today I found myself looking at patio sets and longing for a fully assembled one to magically land on my balcony. I even added one to my cart before reminding myself this would have to be put together also. So after a few glasses of wine and some long sighs I lugged the remaining chair and table out of storage. Putting on a movie to add to some distraction I found myself watching a special where people are going back or forward in time to avoid death, to stop another's death or to die. There were multiple episodes, powerful, emotional and oh so human. Each character had regret and I found myself crying. It should be noted that I rarely if ever cry in movies. But these were hitting me in a place I don't acknowledge. My ex-boyfriend liked to say, "You're messy but you know where everything is." One of those supposed compliments which is really a side cut. I'm hyper organized in what appears to be a chaotic way. Though they were in a mish mash basket of odds and ends, I knew where every screw was. My fingers were hurting from turning the screws as I told myself that I had to complete this. It was no longer about that patio set. My immobility had nothing to do with putting anything together and everything to do with remorse. Shame was again rearing it's ugly head saying, "Anyone else would have had this done immediately. Everyone else would. You are the only one." Of course this isn't true but hard core shame doesn't give a shit about facts. My nails were chipping, I wiped hot tears to see, and I did it. 

Now every piece I've put together, truly anything I've put together, is always unsteady. That company really didn't need to give me a replacement as it's clear I'm the issue here. I look at my ticky tacky balcony that I've put together and I see myself. You can look at each piece and see my journey; some are faded and have seen better days, others look quite nice if you don't get up close and see how it's a wobbly mess. But each piece is together, not perfect, but even in it's unsteadiness it's holding it's own. These pieces will host friends laughing and my cat attempting to jump up and do a tight rope walk on the rails. This set has held me as I stared out at the trees in fear. I didn't get it together in a timely manner but it's together, I'm together, and though unsteady we'll do what needs to be done.