Greenstorm's Journal

-snowsnowsnow but ground not frozen yet. bulbs going in.

-grouse in the crabapple tree eating crabapples. hazard wanted me to help him hunt them.

-tons of disability phoning and forms last week, used most of typing/writing

-art studio nice and full a couple days, for mug fundraiser and the fibre people just hanging out

-off birth control pill = digestive system fixed, feel like myself, charge into things like conversations or cooking but still have brain fog so sometimes ultra mess up. F'rinstance, looking into the sidemirror, seeing my driveway as I try to back into it, brain somehow deciding I was trying to avoid it rather than back down it it so correcting to back into ditch (caught myself before I went actually in the ditch in the snow, but still, it's that kind of thing). Also more muscle and joint pain. Also waking up ultra dehydrated in a puddle of sweat most nights. ARGH. No dangerous levels of S thoughts. Currently seem to be going back and forth two days on, two days off as the symptoms of each option end up sucking. Maybe I should call the nurse line and ask for advice.

-woodstove season is nice

-pulled my back pretty badly for a couple days, the same spot I pulled when I first moved into the house. Getting up and down from the toilet etc was pretty bad. Drugs, rest, gentle movement & time fixed it

-the cats' winter coats are deeply velvety and they fight on my bed at 7am when they get hangry before breakfast

-ate three meals a day for awhile, though admittedly it was mostly bologne sandwiches, scones, pears, and greek salad. Having an abundance of those things that were easy to make was great. I felt rich, luxurious, and generally good. Maybe also linked to food not meaning a ton of pain

-super crashed out after disability stuff and pottery thing

-peonies going in the ground shortly, into the snow

-all pig rescues in "northern" and "interior" BC are full (that is more than a couple hundred kms from the border)

-happy to be alive. Not relieved, but actually happy.

-I know I'm forgetting things

One of the things I really appreciate about counseling is that I can express the breadth of things that are good in my life, or bad, and I don't have to tailor it. Then I can dig into why things are good or bad for me and not get told to go easy and it's really just ok and I'm ruining the vibe or something else dismissive.

Also: tried birth control pill again last night. Not good for muscle pain, abdominal pain, or dissociation. So I guess we'll see how long going without seems safe? I know that theoretically side effects can subside etc but ugh.

So I went in to the doctor on Thursday. I'd been planning to walk in, since I knew she was working the walk in that day, but when I showed up with a bunch of papers they said normally walk-ins don't fill out paperwork but they had an appointment with her that afternoon that had just opened up. So, I went home and came back at 2:30 with a bunch of papers: my summary of symptoms by order of priority and what I'd tried and what I wanted to try next, a work form for a sick note, the article my counselor had sent me for GPs managing autistic clients that talks about comorbidities etc, and... um, something else which I've forgotten, which is why I make lists.

We had an hour to catch up on the last 6 months, decide what to do next, fill out the form, etc. Obviously we did not get through it all. I went in with the intention of taking some time off work. Long story short:( blah blah blah )

There's lots of good news though, starting with the "you need to be dead" voice/feeling being pretty much gone since I stopped the vyvanse. That is *huge* obviously.

I've been managing to run the dishwasher once a day because the cats need clean bowls to eat out of, but all other cleaning has been off the table. This morning managed to wash the downstairs sofa for the first time in awhile (Solly gets pretty muddy and goes on it) and sort of clean my pottery area a little.

I put the handles on some pottery two days ago, it's been a long time since I had energy to work on that sort of thing at home.

4/7 house animals went in to the vaccine clinic yesterday. Some hadn't seen a vet since 2018. It completely flattened me for several hours and used everything I had -- I didn't even have energy to make tea and breakfast until after it all, and after a nap. But: cats all microchipped finally, treated with a tapeworm-inclusive dewormer that we're not allowed to get over the counter here, Thea got her vaccine boosters thank goodness, and all the animals hated it but were pretty good about it and have somehow already forgiven me. Thea went in a carrier in the back of the truck and didn't even throw up! She also did well on leash and appreciated three people all petting her at once, and she tolerated a little puppy running up to her very well. Somehow she is officially a senior dog now, eep. Let me tell you though, three yowling cats in the truck at once is a sound I won't soon forget, and I learned that Demon can jump over a door with a standing start. Like, a door door. This goes under health stuff because their health is my health and because literally they kept me alive over the last months, and no doubt will do so again.

I've had the energy to text a little more with partners and friends, though nowhere near enough for a call yet apparently.

I even had the energy to open my mail and see the furikake Josh sent me, which will be nice and easy on rice, or rice and salmon.

I'm starting to think about writing up the ad for the pigs, about taking the last couple weeks of garbage to the dump, and maybe even vacuuming. Not there on any of them yet, but it has at least crossed my mind.

Thoughts don't come easy on this new medication. It gives me access to physical energy/ability to do things, but that energy is drawn from the same pool I'd use to think, and it doesn't make the pool any bigger. The more I draw on the physical pool, the worse the cognitive pool gets. It's also striking how clean the lines are on what my mind can do and what it can't do when I look at cognitive tests. I'm so curious about it and I'd like to know more.

(think of that last paragraph like a 5 mile run where I pause and just sit, doing the mental equivalent of panting, and decide that's enough on that subject because there are other things I want to write about).

Today I was once again thinking about how PTSD and autism are linked in our society. More specifically, how perception of actual reality is discouraged-- how people with sensory differences are taught from very young that their senses are lying to them. Sunlight, or heat, or cold, or sitting in a chair, or low noise-- those aren't really painful, don't be silly. Twirling, or standing on your toes, or doing proprioceptive activities, those can't possibly be stabilizing, they're distracting, don't be silly.

So it's hard to learn, not just what pain or pleasure or stability feel like, but also what reality is. It's hard to interact with the actual world because we can't share those experiences, we need to keep them secret.

(another pause for cognitive breath, while I give up on where that train of thought was going)

It's beautiful here today. Good crisp below zero, bright sun bouncing off the snow, if you had a south-facing rock you could nap in front of it while the thermometer read -15C and it wouldn't be cold.

I started a ton of pepper seeds on the weekend. Last year I'd tried really hard not to start too many seedlings, so when the garden club started up and started selling seedlings I didn't have any extra. The year before I was going to be moving to the Island so I didn't start much. This year I can go back to starting lots of seedlings and Corrie said she can sell them at the farmer's market, I guess people snap up anything that looks like a seedling no matter what in the spring. So: peppers started. Tomatoes will be started roughly beginning of March. Squash will be started roughly mid-end April, along with cucumbers. Not sure if I should do lettuce etc?

I definitely need to set up my big shelf for seedlings. Right now things are being started, waiting for dividing in a flat, under my one light. Looking forward to this.

Meanwhile my body hasn't been able to do pottery much, and Tucker was here last week, so that's been slowly humming in the background. TS Eliot is always on my mind. At some point my skill may be enough to capture some of this.

Well, that was a mistake

So. I've taken the narcolepsy drug (modafinil) a couple more days (very few, because I'm worried about the hormonal-medication-cancelling effects) and it gives me a bunch more mental functionality than I've had in awhile. My memory works better?

I'm titrating down on the SSRI by 1/3, so it could just be that, or that could be contributory.

The sun is returning, that could be contributory.

But also-- modafinil has mitochondrial action, it helps remove damage from them of the kind caused by... long covid. So it's been helpful in very early, off-label use for fatigue and brain fog in long covid.

Now, my baby brother died of a recessive mitochondrial disease. I've never been tested. My energy stuff has always existed and it's weird.

This drug does not make my energy stuff wholly go away but it gives me a little more ability.

I have no idea if any of these are connected, and it would be funny to get to this point through the narcolepsy route if it is that my mitochondria are just slightly less functional through having a recessive issue (is this one where one allele can make up for the recessive one but not as well?). Back when Eli died I was 10 or so, it was 32 years ago, and in a tiny bit of googling I see that they know now his condition can be caused by mutations to any one of 110 genes, and 20% of cases are mitochondrial and not nuclear DNA, which is amazing. I expect that "recessive" isn't a great fit for it anymore and I don't know which variant his was.

Someday I'd like to get enough genetic testing done to know what things look like in there but I'm not happy about the privacy around that stuff right now. The cheap ones are especially not attractive given everything. I don't know if that issue will get better within my lifetime or not.

Anyhow, PDA still exists A LOT but at least I'm less immobilized than I was, and sitting upright is less exhausting.

That went really well. I didn't feel medicated, or anxious, or jangly. It had less effect on me than caffeine as far as unpleasant side effects. I didn't get the death tired thing in the afternoon and I was mildly more productive. So that's good?

On the other hand I can feel the hormone-cancelling effects kicking in: night sweats, dizziness, nausea in the morning. Probably worth it maybe?

Trying another one today, and another tomorrow, then taking a couple days break. We'll see.

Ok, well, whatever is in those birth control pills they definitely make me much more tolerant of sweet things and general US-type snacks (chips, candy, ice cream). Now that I'm off it I'm back to normal again, which is too bad because I still have like 1.5 pkgs of oreo cookies and a thing of ice cream and half a bowl of chips. Oh well.

Definitely being low on calories is a mood issue. Not "hungry" but "below 1500 calories for a couple days in a row" or whatever. It's surprisingly hard to eat enough home-cooked stuff to meet that threshold; my pork is super fatty but my body doesn't want a ton of it, and I honestly struggle to eat three meals a day. Soylent is helpful there but it would be nice to find something more, I don't know. Cheaper would help for sure. I'll fill the calorie gap with fruit if it's available but it has to be good fruit, and that's so seasonal.

Watching hydroponics videos lately and pulled my hydroponics stuff out. I have 41 tomatoes in pots already and 160ish in the ground, so I guess I need some planted in another way?

I'm resigning myself to needing ~12 hours of rest per night. There's less time to do things, obviously, but being in less pain and not feeling dead is pretty amazing. We'll see how long this whole thing persists. At this point I should probably have a thermometer in the house.

As I think I mentioned when talking about poetry, phrases come into my head and float around or recur for days, months, years. It's not usual for my thoughts to have words associated, so it's kind of neat when they do. And since I gave up on moving I have these flashes where I'm doing something, often petting the cat or planting something in the garden, and I look around and think, "what if I'm happy?"

Tucker mentioned something about how the spaciousness in their life is healing and regulating but not possible to maintain while working etc. It's so healing, and it can't be permanently maintained, but I think it can be a baseline I return to and where I most often rest. I think I'm surprised to find happiness here in this sort of minimalism. I know I can find happiness in people and being full of connection, and it seems I can find it elsewhere as well, in company with myself.

Gotta decide what to do with my couple hours of good time today. Planting things seems good for solstice, as does making soap. Whatever I do, I'll do it while feeling grateful. This self I have is very, very tricky but it's there for me with kinds of defense and support other folks only dream about.

200 tomatoes and still planting. How would I ever have thought I'd achieve this sort of joy?

A week ago I had an appointment with my PDA counselor. The idea was to sort through my symptoms, medication, figure out what was resolved and what wasn't, what I should pursue and what I shouldn't, what my next steps were, etc. The whole thing is honestly pretty overwhelming.

So we spent the hour on that, and during that hour she mentioned that autistic folks are super prone to autoimmune conditions. I knew this. We're hugely gender diverse and, er, ability-diverse? Hypermobility, fibromyalgia, etc. I was talking about my skin symptoms that I'd had for so many years, and about the tiredness, at various times. She mentioned MCAS. Now, I'd looked at MCAS way back and hadn't really thought much about it. I was on allergy pills for my skin stuff for a long time, though, and maybe that was correlated with better physical welll-being?

It's an easy one to test for, though. Take allergy pills. There are two kinds of histamine blockers and over the counter allergy pills are one class. Those mostly deal with skin, airway, etc. There's a second class that I think needs a prescription and it deals with GI stuff. I have both sets of symptoms so--

I bought allergy pills and started taking them a week ago.

My tunnel vision/eye stuff is functionally gone. My memory is much closer to normal. My mind doesn't feel like a frozen ten-ton molasses blob I'm trying to roll uphill. I feel energetic in the mornings.

I still get super tired and need naps, and I'm still a little slow off the mark, but I've been going outside and doing things. My heart still pounds kind of erratically (like one out of fifteen times I walk up the stairs to my bedroom, or one out of seven times I carry the feed buckets) and my muscles feel slow/achy, but I don't feel like I'm hauling dead meat around.

This is basically amazing.

Now I'm thinking, what if the H2 histamine blockers remove my GI stuff? I've had that forever, it's mild enough that it's inconvenient but I never starve, but I remember waking up to stomach pain most days in high school even. That endoscopy I had last year wasn't conclusive. Low-level nausea is pretty common for me. I also don't know what level of discomfort normal people have, folks talk about things like indigestion all the time. So I've been accepting all this stuff as just normal, but what if it could go away?

They say as you get older things hurt more. A lot of this stuff has always been like car noise in a city: background, the brain usually cancels it out, no point in complaining, everyone deals with it and it feels like an inevitability. I don't class "normal stuff" as pain because what's the point? But what if, as I get older, I could have days without pain? Regularly? And not just without acute pain, but without the background stuff?

Either way it's amazing to be able to focus my eyes fully again, to be able to think my way through a sentence without having to reread it as I go because I've forgotten the beginning. I'm very curious about how the allergy pill impacts my brain function. I'd heard something about mild anaphylaxis, narrowing air passages or something, from MCAS. I can't find it now. Could that have been what's going on? Something else acting directly on my brain? I'm so curious.

Edit to add: I spoke too soon, it doesn't seem to be fully better but it does ebb and flow and it's less intense for sure

Tired but not completely dead after going to the thing on the weekend.

I think the medication reduction (and shift in time of taking it) is helping. I seem to have roughly 12-14 hours after taking the pills that I need to be able to sleep, so if I take them a couple hours before bed I'm lucid a little earlier. But also 75mg just makes me way, way less exhausted than 100mg.

I probably gave away 70-80 packets of seed on the weekend, maybe a little more? I like doing that. I need to come up with a better system for packaging seed, though. Portioning it out and labelling it is slow and if I wait to do it till right before the seeds go out my PDA kicks in. I think I need to leisurely design labels and fill packets earlier in the winter. This is significantly less seed given away than a year or two ago (I think my max was a thousand packets one spring?) but it's all local, and that's nice.

I should explore how I feel about taking money or not for things I make with my therapist, probably with the one who I vibe with more spiritually/nature-relatedly. I haven't seen that one in awhile, and I should. The one I'm seeing right now is the PDA strategies and therapy modes geek, which serves a very different need. I'm pretty glad I have both of them. I feel really good when I give away what I make, but I also feel like "the weird one" again and that can be kinda rough? I don't get that feeling too often, since I don't often violate important social norms (like our capitalistic mode of reciprocity).

Geese are laying. Swans are coming back to the next town over, where they will blanket the fields in what looks like living snow as they glean grain before continuing on their migration. They're usually here for about a week, and I should probably drive down and soak them in. They are beautiful. I hope they're not hard hit by Avian Influenza this year: the migratory birds carry it and spread it.