the patience.

I’ve often wished I could be one of those people that was quick with words. Quicker with my thoughts. I’m not though. I’ve always had to have a patience with myself. And in turn people need to have a patience with me. I’ve lost count of the speeches I’ve gotten about needing to speak up more, share my thoughts, be more social, and so on. It takes me time to absorb what is happening and for my mind to funnel through it all. There are occasions when I don’t say something on my mind for fear of it sounding dumb. But more often than not I just haven’t concluded what I need to say yet. I’m not one to talk just to talk. Especially in a work environment. But I assure you, if I feel strongly enough about something, I will say it. In general conversation my comebacks sometimes come later after the conversation is done. So if you get a random message you know… a half hour later… you’re probably thinking, that was eons ago why are we coming back to it? Erm, just took my brain that long to process it. Haha  I will probably forever be that person that emails the meeting host later with my thoughts once I’ve had time to think things over. Because if there is a problem that needs a solution I will no doubt try to solve it. All this rambling to say that I think the same messaging goes for my body. I’ve had to be extremely patient with it. And holy shirt is it hard.

Lately I feel like a lost puppy. Wandering aimlessly not sure what to do with myself. There have been more days that I’ve contemplated death than not. I sit in a pain that’s hard to describe. That little hope flame starts to flicker threatening to go out. It goes on for so long you aren’t sure if it’s permanent or if you’ll ever be yourself again. And at this point I just mean be myself again in personality and spirit. Have you ever been under water a bit too long and when you get back to the surface you gasp for air? I just had that happen the other day. I was drowning for weeks and suddenly out of nowhere I could breathe again. It can happen that quick. The worst part is that I can go back under just as sudden. I’ve maybe lost you in this metaphor, but I’m not sure how to fully describe it. It’s like one moment I’m in a fog and suddenly I feel like myself again. It’s such a drastic change that I feel mentally.

Being around certain people seem to spark me. Like a little jolt of electricity. I can come to life for a few hours. Then they leave and I’m floating on the high and suddenly I crash so hard. Or heaven forbid, this crash happens in the midst of my social activity. It’s absolutely devastating. My body says, “ha ha just kidding! We thought it’d be fun to tease you!” What an a-hole! Seriously. I find when the decline is gradual I can prep better and adapt. But when it’s sudden I’m left crying at my desk, in my car, walking down the sidewalk, in a stairwell… wherever I am. On occasion I can keep it together long enough to get to a safe space. But it’s like hanging out on the edge of a cliff and one wrong move… it’s over. I’m a freaking disaster. This is likely why I enjoy being close to home or even better, staying in my home. So my bed is nearby and I can lay down for a few minutes to recharge. Even though I have several very magical people in my life, I’m still not great at asking for help. My body is like, “Just ask to borrow their couch for a few minutes? It’s fine!” And my brain is like, “Don’t you dare, you weirdo!” Brain usually wins out and then I’m left in my suffering to pull it together. 

I always wonder if people notice my suffering or if I appear together enough to get by. I probably don’t let my guard down enough to let people see. When I'm really down I stop caring about a lot of things, but the one thing that usually stays in tact is worrying that I’ll bring other people down with me. So I just keep to myself as much as I can. I can usually sense if a person genuinely wants to know how I’m doing and I will be honest with them. Sometimes there’s situations where I just need to survive so I just deflect if necessary. What’s even better is if someone else has an issue or needs to vent and I can focus on their issue instead of my own. Sounds healthy, right? ;)

I’m in limbo right now with my treatment. I did round 1 & 2 and am now taking a break. Focusing on getting through tax season at work in one piece. Then I’ll weigh my options. Step 1 will be visiting my doctor in Boise. After that we will just see what happens. Maybe I’ll move on and find a new doctor. Maybe I won’t. None of this is simple. And it’s hard to understand unless you’re experiencing it. If I walk into a primary care office I appear to be a very healthy human and there’s nothing they can do for me. If only I could let them step into my body for a few minutes so they can feel how I feel. I came across a TikTok the other day of someone else living with chronic illness. They were crying in their car saying all their feelings through their tears. It was everything I’ve ever felt said out loud. If you flipped to her page and saw most of her other videos you’d never know. Because that’s what it’s like. It’s invisible on the outside most of the time. https://vm.tiktok.com/TTPdSKu37M/

I encourage you to also watch this TED talk (promise it's not that long!): https://youtu.be/Fb3yp4uJhq0

Just this past weekend I had the urge to finally put up a book shelf I’d been meaning to tackle for weeks. And by book shelf I literally mean inserting one shelf on pegs in our built-in. Not complicated. But also required moving books around. But I did it! And then I thought it’d be fun to start organizing Theodore’s Legos for awhile. I didn’t last terribly long. But I thought… seriously, this is what my life could be like if I didn’t feel like complete ducking garbage all the time. I’d actually get things done. Sometimes I worry that I’m just lazy. No, I’m not. I just feel like horseshit and I often have to force myself to do everyday activities like showering, doing my hair, and going to work. Some days that takes like 10 spoons! So anything beyond that is a miracle. I also have to consider the aftermath of these motivation bursts. I went for a walk last night even though everything hurt. I just wanted to escape and get fresh air. Then I woke up at 2am in a ton of pain and proceeded to lay there for 2.5 hours waiting for the drugs to kick in before I could fall back asleep again. And today I'm a mess. My limbs, toes, and fingers tingle. My skin hurts. My heart feels unsteady. I'm so exhausted. My brain doesn't want to focus. I keep forgetting what I'm doing. My stomach hurts. I don't want to eat, but I'm kind of hungry, but nothing sounds good. This might have happened anyway, even without the walk last night. It's hard to say for sure. This is my life. Never in balance. 

Thankfully I have a friend who is always so good at reminding me to celebrate everything. Whether it’s going into the office, doing some light stretching, a day without crying, making supper, doing laundry… Literally anything can be counted as an achievement because I actually got out of bed and kept moving forward. So I'll be over here trying to focus on my small wins, making bad jokes, and processing tax returns for the next 6-7ish weeks. 

I hope all of you wonderful people are doing well! I've sure enjoyed seeing the sun the last few days and wandering in slushy mud puddles down the street.

<3 ash

images credit: https://www.instagram.com/revelatori/