I’m generally a “live in the present” person. I don’t spend too much time dwelling in the past or being anxious about the future. My bucket list in college consisted of seeing the redwood trees in California, which I did many years ago, so my bucket list has been empty since then. All of which to say, I’ve spent most of the past year living in the current moment, largely out of necessity because it felt impossible to plan for the future when my present was a revolving set of specialists throwing new diagnoses and treatments at me on a weekly basis just to see what might stick. It’s hard to plan for a future when I don’t know how many hours a day I’ll be able to remain upright (I was down to 3 in April – nothing gets done when you only have 3 hours of sitting or standing per day). 

However, while living in the present serves me most days, I need some joy in my life to look forward to. Otherwise, what’s the point of getting through the current moment? And I also need to allow myself to grieve. I’ve been in a POTS flare since July 27. I’m much more unsteady than usual despite carefully tracking water and salt and wearing my compression gear and the weather eventually settling and pacing so so so carefully. So today’s theory is perhaps my body is grieving the anniversary that I haven’t allowed/forced myself to stop and take the time to focus on. You’d think that would be unavoidable, but I’m very good at having an audiobook going and playing a game on my phone simultaneously so there’s no brainpower left for other thoughts. 

The rest of this post is going to be a stream of conscious post of things from the past year to grieve. I know I’ll have silver lining thoughts as I generate this list, but I’m not going to write them down today.

• Writing hurts. I’m trying a new method and I can feel the muscles around my right eyeball twinging, while I’m not even using my eyes!! I’ve clamshelled my laptop and am using touch typing, apparently while it feels automatic my brain is still working because now I’m feeling the tightness around my jaw as I concentrate on typing. 
• Dictating is obnoxious – I still end up looking at the phone to make sure that the words are being transcribed correctly and it’s hard for me to think as fast when I have to talk out loud. My inner voice is a lot speedier than my outer one!
• Typing on my phone, and using my phone generally is physically painful in the way it always has been – I use my phone too much and so I have a repetitive stress injury in my thumbs, there’s a giant knot of muscles there, it’s not great for me and also at least that’s a pain I’m used to? Wait, no silver lining, just, ow!
• I haven’t watched TV, or youtube, or a movie in a year. That’s the thing you’re supposed to do when you stay home sick, watch minduless television. Television is the opposite of mindless for me, it’s overload. Even just listening to a show (audio description or not) is more than my brain can process. 
• My poor puppy, he never gets to go on adventures, he’s never gotten to learn that adventures are fun because he was an anxious puppy and we hadn’t gotten past that before I got sick. He also doesn’t get his teeth brushed and I haven’t desensitized him to getting his nails clipped so I bring him to a groomer, he also only gets a bath twice a year at shedding season because I’m not doing that and I’m not paying for someone else to do it frequently (thank goodness for low shedding and sleek fur that the dirt rolls right off of!)
• Being disabled is expensive – I have a whole post planned on this – Brownie goes to daycare twice a week because I don’t have the energy to take him to training or to a place he can run or even to playdates, I fell out of touch with both his doggy friends. 
• Getting pet supplies and caulking supplies and most everything I need delivered costs extra to both my bank account and the environment – so much packaging!
• I’ve had to budget this year, in the past I kept track of my money in a spreadsheet because that’s the kind of thing I consider fun! I like seeing where my money goes, but again with the living in the present – I’ve always lived well within my means and so I haven’t had to pay attention to how I’m spending or set goals. Dropping down to 60% of my paycheck (what disability insurance covers) is a huge jump! I’m no longer tracking just for fun. I have to budget for super fun things like compression socks. 
• I keep trying to work and there keeps not being much I can do. I started transitioning from all the doctors appointments all the time to having more space in my life for work in the spring, right when my allergies ramped up and I had to go off my one medication that was really helping.  By the time I got some books lined up that I could read for work I was in a flare and couldn’t concentrate on a serious book. Now that I might possibly finally be ready to do something, there’s not a whole lot for me to do. I’d love to run a project instead of my regular work (because I can make an agenda and lead meetings, but can’t edit documents or upload data) but that only works if there’s a project that needs running!
• There’s almost nothing fun I can do. Being off work and getting to spend all my time at home sounds like summers of years past, except for now I can’t go hiking, or crochet, or visit the farmers market, or cook new recipes, or go out to eat with friends, or play mini golf, or read a book (on paper), or do a jigsaw puzzle, or play a board game. I can’t go visit my friends that live in nearby states who I usually see every summer, and if they visit me there’s not a whole lot I can do, as I just mentioned. 
• I haven’t been able to do any updates on my condo – either I’ve had to pay someone else to do them or they’re just not getting done. I bought this place just a few months before I got sick. My bedroom is a rather neon shade of green. I spent a bunch of time imagining how I might redesign it, and have no capacity to follow through. The caulk in the kitchen and bathroom are gross, I’m only going to replace the caulk at the bottom of the shower door because it’s leaking after I tried to wipe away the mildew and accidentally wiped away the caulk too. It’s only getting done because leaking water all over the floor is dangerous. Phase one caused lots of symptoms so I’m currently avoiding doing stages 2 or 3. 
• My brother’s kids are growing up and I’m not able to see them. I was getting to see the first kid every 2-3 months before covid. I did get to spend a solid 3 weeks with them while we all got sick and recovered, and then I’ve been on a once every 6 months schedule since. Not even. December to August is 8 months. I’ve only met the baby once, the week she was born. It’s not just that I’m not visiting, I’m also not able to facetime, so every time I hear that the littlest is sitting up or starting to crawl it creates cognitive dissonance because in my head she’s a newborn!
• I haven’t been able to continue hot yoga with my colleague or restart pilates with my daughter, I can’t do yoga or the cardio dance videos I have saved or even the standing arm workout. Everything is lying down or maybe seated and every action is calculated for maximum benefit and minimum harm. 
• I’ve gotten poison ivy multiple times. If I had the energy I would’ve gotten rid of it. Even if I didn’t get rid of it, weeding in 15 minute increments means more opportunities to accidentally touch it and then touch exposed skin. I would’t be surprised if I’m also more sensitive to it now. 
• My allergies are so so so much worse than they were. 
• My head hurts, all the time. 
• I’m grumpy with everyone, there’s no well of patience to be a good parent, my friends feel bad unloading what they’re going through because they know I’m going through a lot, and then I feel bad for not being able to be a supportive friend
• It’s so exhausting to have to tell my story over and over and over again, every doctor wants a full recap, and then proceeds to ignore 95% of the information to treat (or tell me it’s impossible to treat) their one area of expertise. 
• Needing help with things means they can’t occur on my timeline and they take three times as long because I have to explain what’s in my head and how I want something done, and then confirm that it’s been done correctly, all while trying not to look at the thing. 
• Emotional exertion counts towards my spoon allotment for the day so I’m crying my way through this post instead of getting the caulking done or playing with the dog who is bored. 
• Insurance companies are so much work to deal with, I cannot begin to tally how many hours I spent going back and forth between one office and the insurance about an error the insurance made. 
• I never used to care that much when work changed the insurance options, open enrollment is now a major ordeal where I have to solve several modeling problems and it’s not that fun. 
• I missed a year of Jenna’s kids lives, I missed most of the year of most people’s lives. 
• I don’t have energy to advocate for anything other than my own needs. 
• I wanted to start editing Nix the Tricks again. This was the first year I didn’t have any contract work (thank goodness I didn’t have to bail on anyone) and I didn’t get to spend any of it doing personal passion projects, I’m not counting learning about all my medical conditions as a personal passion project. 
• I didn’t step foot inside a school for an entire school year. That hasn’t happened since I started preschool. Wow.
• I don’t have the energy to find a good therapist, so I ended up with one who couldn’t remember anything about me at our third session, quit, and now have to come up with therapy activities like this by myself.