Author Archives: Krissy Gibbs

About Krissy Gibbs

Just your average hippy white trash incest survivor stay at home mom. Is there an average for us? No? Oh well.

I like the right people

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I was talking to one of my kids earlier today about some of my old friends and they pointed out that it is something like half of my friends-made-before-we-had-children group that has at least one child who has transitioned/is transitioning.

This seems like an excellent sign of my good taste in people. I have always been attracted to my people. I also have a significantly high rate of befriending neurodiverse folks. I suspect some correlation there.

(I think it is probably actually somewhere in the 30% – 40% range of families I know but even so that is phenomenally far outside the 1% rate of transitioning in the general population.)

Riding the covid wave

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I like documentation. Documentation is awesome.

On Monday the 20th at about 1:00am our first notice of a problem was middle child waking up to vomit all over the sofa bed and floor of the hotel we were in. Cleaning that up sucked because the hotel didn’t really have cleaning supplies available. Suck.

Because of the railway strikes I already knew that if we waited until the 21st to go home… we couldn’t get home from Edinburgh on the train because of strikes. In retrospect, since we took the bus anyway, we maybe should have done that? I don’t know. I also knew that our hotel was booked for right after us and no other rooms were available anywhere nearby to allow us to wait out illness/strikes.

So we cleaned up and went back to sleep. Later on Monday the 20th we got up and packed up and took a bus to Birmingham (strikes had already cancelled all trains leaving Stratford-upon-Avon). Then we boarded what was supposed to be the first of three trains home. The second train was so delayed we missed the third train. I scrambled and found a bus route home. While we were on the bus Scotrail announced that they were adding one last train to Inverness. Damnit. MC woke up long enough to make transfers and otherwise slept through the ride home.

We arrived home at about 11:45pm on Monday the 20th.

Middle child spent Tuesday the 21st in their room on quarantine after a positive covid test, mostly asleep.

Wednesday the 22nd Youngest child developed a high fever and intense exhaustion and body pain and went to bed. We decided there wasn’t a point in putting MC in quarantine if YC was sick too because she is too little. I got some chores done in a big hurry because I could see that this wasn’t going to go well. I already felt cruddy, but a walking wounded kind of cruddy. In between chores I would end up snuggling YC back to sleep every time she woke up crying. Noah and EC both felt cruddy but not incapacitated. MC was awake for more of the day and happy about lots of computer time.

Thursday YC could not handle having me get out of bed because everytime I moved she cried. She was miserable. I didn’t feel good but I didn’t feel heinously bad. I was pretty happy about the rest even though I was super upset to miss an event I was supposed to freakin host. Whine.

Friday was my day to be flat out in bed mostly asleep. The chest congestion was still minimal. I hurt everywhere and couldn’t stay awake long enough to follow most of the bad movies I had on for company. YC was up and playing and complaining that no one wanted to entertain her. MC was feeling a little better but far from perfect. EC was feeling crummy but not a lot worse. Noah was still feeling cruddy but only a little worse. Noah and EC still test negative at this point.

Saturday I was awake slightly more but the pain was worse and the congestion was starting. Lots more coughing. Very full and disgusting hanky. YC was able to get up and move about but very grumpy and whiny and miserable. Noah felt worse but still able to do stuff. MC and EC both complained about not feeling well but managed to do what they felt like doing. I was barely able to stand and walk to the the toilet. I took a covid test just so I could double check. Yup, positive. YC hates the test so we are just calling her positive.

Today is Sunday the 26th. I can stand and walk more than yesterday but not for long without intense dizziness. I need to lean over the counter and rest if I am up for more than 2-3 minutes or get a chair. I am hacking up half a lung in disgusting productive coughs. It is less prolific as I am awake/closer to sitting for more time. It took a while of hacking to be able to breathe this morning. Today will definitely be a bed day. EC and MC both say they don’t feel good but they are in playing video games. YC is in bed with me because she doesn’t want to be up. Noah says he feels worse than the previous days but he hasn’t come to bed yet.

Being sick with a fitness tracking watch is fascinating. I can watch my resting heart rate climb (over 90 when usually it is in the mid 70’s). It does its best to monitor my oxygen saturation. It is monitoring its opinion of my “stress” rate (higher than it has been through the entire time I have owned the watch). Yesterday it claimed that my stress was skyhigh and it spent the whole day begging me to rest. I was flat out in bed barely moving enough to use the toilet or eat. My “average” for the previous year was a stress level of 37 and yesterday it was up at 81. Hm. My pulse oxygen readings are also lower than normal but probably not low enough to call a doctor yet. Low enough that I am monitoring it.

I knew the chronic bronchitis would be a problem if I caught covid. I’m coughing more than the rest of the house combined. Damnit. Not that I wish they were sicker. I don’t.

This was a very bad week to lose my glasses. I have a super bad headache. Ugh. Typing this was hard. Time for a nap.

The monsters under the bed

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Sometimes you get cocky. You think, “Hey the monsters under my bed haven’t come out for a long time. Maybe I made friends with them and they decided to leave me alone as an act of mercy. Maybe they died of natural causes. Maybe…. one of the many chemical warfare bombs I threw under their killed them. Maybe.”

Then something happens. Maybe you knock a glass off your bedside table and it shatters on the floor. Maybe a support plank in your bed gives way and makes a loud creaking sound when you move. It might be a big sound or it might be a small sound. It really doesn’t matter. There was never much sense behind the monsters coming after you anyway. They have their own agenda.

So you step lightly off your bed expecting to walk peacefully off to the bathroom to brush your teeth.

Even when they came out often you never really learned how to hop off the bed fast enough and far enough away to get away from them. Their arms are so long. They can grab you so hard and pull you so close. Their teeth when they bite you are so sharp–so terribly razor sharp. Their teeth are a bear trap. If you move very much you are going to tear the wound and make yourself bleed out. Instantly your stomach fills with the sharp, acrid, acidic, burning poison of fear.

You are always so terribly terribly afraid that even if the bleeding doesn’t kill you first your body is going to produce so much acid that you will destroy yourself from the inside. You’ve been so close in the past. The acid burned holes in you so that you could barely eat, barely sleep, it burned through the tissues of your body making terrible pain absolutely everywhere.

You will never, ever forget that pain.

So when it starts you have to first go very very still. So still that you calm down all the way to the atoms of your body. So still that it feels like if you are not careful even this paralysis might kill you. You have to slow down enough to figure out how you are going to get help.

You can’t be casual about getting help. If you ask the wrong person they think they can toss you a screwdriver or a metal nail file and tell you to pry it open yourself.

You are stupid. If the only tool that you have to hand is one that will poorly break open the seal and probably slip sideways in the blood and cause you to damage yourself even more terribly… you will use it. You are scared and you are hurting and thinking is almost an impossible task. You are desperate. Thinking requires so much will. So that first decision, “Who can I ask for help?” is maybe the first, last, and only time you will be able to think.

You have to make sure that you carefully only ask for help from people who have the right tools in their toolbox. People who have experience with this kind of atrocity. People who will neither flinch nor minimize the severity of the wound. Probably these are people who climb out of their own beds very carefully because they are currently at a détente with the monsters under their own bed. They know deep in their bones what is at stake if they fuck up.

Make no mistake, that monster wants you dead.

If you choose very carefully and you manage to pick wisely and your dear, wonderful, important friend helps you to get the trap open that doesn’t mean you have to cling to them for all of the healing. They can pack up their tools and head back on their own journey. Someone else will probably be along soon and bandages and medicine are so much easier to get help with.

It’s getting the damn trap open that usually sinks a person. That moment is do or die. That moment decides if you will have more moments. That moment when you go quiet and you pull yourself in and you weigh carefully exactly who you can ask…

It’s everything.

You had better hope you made the right friends. You had better hope they have their toolbag with them when they happen to hear your call.

Sometimes you get lucky. You can limp away. You are reminded that you did not actually kill the monsters. The war is not over. You will have to keep fighting.

But for now you can rest. Rest and heal. Be grateful that you made the right friends. Be ready to help them with their own monsters when the need arises. Because as sure as the sun will rise those monsters are going to keep trying to kill you all.

There is always a cost

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I am so worn out and I am trying to both rest and catch up and it strikes me that they are diametrically opposed. My growing zone has an annual last frost date somewhere between the last 4 days of April and the first 5 days of May. There was snow on the ground last week. Because of the world-wide problems with insect die off it is widely considered wise to wait until the average temperature is 10C or above. This is slightly hilarious to me because only July and August have night time averages above 10C… the average is 11C. Does that mean we shouldn’t ever disturb gardens here? It’s a thought to ponder. (Waiting until the temperature rises is because bugs hibernate when it is cold and if you go out and tidy up your garden you may well kill off a generation of wee beasties unintentionally.)

Tasks I need to perform:

  • install bike pulleys
  • install trailer pulleys
  • build a better compost unit (my pallets are all rotting and sagging)
  • sift my compost pile and distribute the lovely material around my garden
  • get some fertilizer on my hydrangeas and all the food plants
  • finish taking apart the old shed for boards
  • build the potting benches for my poly tunnel and the raised beds I want to have in there
  • weed, always weeding around the fence borders because the ground elder is fierce
  • get more wood chips and cover more grass with it because by golly in about 4 years I will have subdued it enough to make a serious start on alternative ground covering plants
  • get more seeds because I only had like 5 packets of veg seeds left, and they were mostly gone in any case, and I need to get cracking on starting this year’s plants
  • figure out storage for the mountain of costumes I brought home from Texas
  • respond to cafe owner about holding meet ups for the youth group
  • schedule a walking munch and the 101 workshops
  • clean my dang bathroom
  • tidy up my room because right now it is a royal mess
  • restart the subscription orders from the grocery service
  • do a bit more pushing with the mum bike group to get some activities scheduled
  • figure out when the group camping trip is happening and get myself organized for that
  • install the trailer hitch on the new bike so that I can have towing capacity when I have extra passengers
  • get YC more time out on the balance bike because she has nearly outgrown it and I don’t really want to buy a bigger one I want her to progress to pedals, dangit
  • schedule with a freakin roofer
  • schedule with a plumber for the apartment bathroom (the sink is leaking)
  • schedule getting the retaining walls repaired around the property because it is past time
  • I really should be reading books because, dude
  • don’t forget the damn skin care routine
  • oh yeah I should eventually have sex with my husband
  • all of my kids could do with some one on one time because they are all feeling super needy and emotional
  • I really need to organize group bicycle skill training for my family because my instructions are not adequate to help all of them know what they need to know
  • I need to organize specific training in bike maintenance because this is causing a lot of fighting and fussing and it is driving me insane
  • I should submit data to the national database about when my fucking fruit trees are in flower because tracking this stuff is important
  • the XR people would really appreciate it if I took on more duties, as would the allotment people
  • oh yeah, I also need to schedule some physics experiments because my kids really don’t understand some basic elements that would make cycling go better
  • I need to sit on my kids more industriously about working on their school work because that is literally one of my main jobs
  • I haven’t touched up the sloppy paint areas in my room I was going to come back to
  • I want to move the white board from the kitchen into my bedroom so I can use it to track forking lists like this
  • I also want to change a bunch of how I store things in the kitchen/dining room/laundry room because the current set up is inefficient, sloppy, and difficult to keep tidy
  • I should also be more industrious about exercising and eating vegetables and going to fucking sleep at a reasonable time

Yeah. Fuck me. I still have almost constant headaches and neck aches from the concussion. The sensitivity to light is really bothering me but I have to push through it anyway. I am still feeling stupid and like I am not retaining new information. I feel unmotivated and weary and frustrated at basically every moment of every day.

Visiting Noah’s family was intense. I feel like I understand the dynamics a bit better. I have much stronger opinions about what I would guess for various folks’ diagnostic labels but I try not to say those out loud too much because I am not an expert and I am not seeing any of these people in any kind of professional capacity so it’s a dick thing for me to call out. However, it helps me decide how I should respond in terms of my own behavior and as long as it is my opinion and judgment and it exists in my head and I’m not trying to influence other people I think it is ok. It’s funny to me how much I can now go, “Oh yeah. I’m trying to place a rules system around this topic because that helps me understand it.” I don’t want to make other people agree with me or change… heck I don’t plan to see any of those people again for 3-5 years. I will barely communicate with them through rare letters.

I believe it is important for me to think about things in this way because I have to think in a long term way if I am going to manage the historical trauma my children have inherited. I happen to be a big believer in the epigenetic nature of trauma. The things that happened to their parents impact them. The things that happened to their grandparents impact them. The things that happened to their great grandparents impact them. That said, neuroplasticity and resilience count for so very much. And let’s not discount the benefit of various levels of privilege.

I don’t need to try hard to control other people. I need to know what I need to think about when it comes to my own behavior and what I am modeling for my children. That’s what I am doing here.

I mean, I can worry about the gardening and the social life and the academics and the house maintenance… but what I am actually fucking doing here is figuring out how to raise people who can come from a fairly intense amount of ancestral trauma and thrive. Their mental health, their resilience, their ability to grow and change and find a better path is what I am fucking doing with my life.

I lose sight of that. I get mired in the weeds (literal and figurative) because it is easier to put my head down and just do whatever is in front of me. When I do that I invite inconsistency and acting out unconscious patterns. I invite the repetition of behaviors that have already damaged their bodies through their inherited genetics and what the fuck am I doing; I know better. I don’t need to shove them through survival. I don’t need to create lists of tasks so long that no lifetime can contain them all and then convince my children that they are inadequate if they aren’t working their bodies into dust.

Life is not about grinding yourself in a mortar and pestle. It’s just not. There are costs to those behaviors and attitudes: impatience, lack of understanding, lack of dignity, unkindness, addictive behaviors, unhealthy bodies and minds.

Noah’s grandmother survived, but the costs her children paid were so severe that they cannot bear her presence. There is duty there, some of them still serve that duty, but there is no love. Her grandchildren can barely tolerate her. Her great grandchildren are split on despising her or on not knowing her. She accomplished fairly impressive things. What was the cost? She lies on a bed alone in a room day after day. Most of the people who have ever known her have no interest in her company. Was what she accomplished worth the cost?

Noah’s mother mostly has good relationships with her children. Noah fleeing the nest as early as he did and with such intensity seems to have made a lasting impression. She worked on her behavior. She came to therapy late in life but she did get there. That’s something. Is she perfect or healed or a person I would want to spend much time with? Oh goodness no. But the difference between how she acts now and how she acted when I met her over 15 years ago is dramatic. Not different enough for me to leave my children alone with her, even though she did ask politely.

I have stopped looking at the long run. I no longer weigh and measure how I behave based on the relationships I want to have with my 30 and 40 year old children. I am sloppy. I am messy. I am inconsistent. I am pursuing short term goals at long term cost. That is stupid. I am not modeling what I think should be modeled. I am not showing how to make better choices with a joyful heart. I am dragging myself through a series of tasks and I am short tempered and impatient. I don’t think I am being vicious but that should not be the bar. Frankly I am not happy with how I have behaved for a while. I’m distracted. I’m snippy. I am not performing the behaviors I believe are necessary because I am wearing myself to the bone on things that matter so much less.

This is not what I want my children to remember. Do I think they need to have some challenges and some difficulties in life in order to build resiliency? Of course. That doesn’t change the fact that I don’t want to be outward focused. I want to be focused in on the people I made commitments to.

Krissy, you know who you are supposed to be. Go fucking act like it. Or you will pay the cost.

Put Yourself In The Story

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It’s hard to explain what I mean when I say that I can tell I am not doing very well. Yet I need to explain it to me so that I can change it. I feel out of control. I feel like I lack focus and power to decide who and what I want to be. When I feel like this I tend to fall hard into the helper mode, by golly I will offer to help fucking everyone then I feel like I have nothing left for myself. I will pour out all of my lifeblood into something I don’t care about and at the end of the day I feel exhausted and empty and like I did nothing that makes my life feel like it is worth living. I am not acting like I am the main fucking character. 

I’m not trying to be all narcissistic about this and act like I need to be the main character of everyone else’s story, just my own. It is actually healthy to be the main character of your own story—that’s not maladjusted thinking. Subsuming yourself into everyone around you is a problem. That’s not healthy; it’s a lack of boundaries. Boundaries aren’t rules you enforce on other people boundaries are knowing where you end and where other people begin. Boundaries are knowing what is for yourself and knowing what is for other people and making sure you put enough gas in your own gas tank so that you can keep the damn car on the road.

For example: I am genuinely fulfilled by gardening work. When I keep myself so busy I don’t have time or physical energy to do it I feel shitty. I can feel this shift as spring comes on in Inverness that was a lot more muddy in California. The kinds of work I can do outside are different over the seasons in a way I still haven’t adjusted to yet. Combining this with the fact that bike events are going to increase in frequency and time length means I need to be putting gardening on the calendar in concrete and demanding ways. It’s also competing with kid school/social stuff and that’s a whole long blog post of its own.

But that’s not the only thing. And Jesus this next bit is going to sound cunty and this is the kind of thing that makes it feel scary to write anymore. There are pieces of being married that chafe sometimes and I need to find a greater degree of peace with them. We went to a rope workshop (we meaning Noah and I… not the kids… obviously) and I want that to continue and I want us to figure out how to deal with some of our challenges in that department. It’s kind of funny that most of the time I feel like I am the complainer in my marriage and then there are times when I feel pretty fucking rude in my judgment of Noah’s complaints. It’s not an attractive trait on my part. There are times and ways that Noah really struggles with being able to explain or understand things and he launches into these long winded rants about why it’s impossible or unfair or almost malicious on other people’s faults that he can’t learn from an explanation someone else is giving. God damn in those moments I notice that he and MC have that in common so maybe MC’s complaining style isn’t entirely inherited from me. It’s dramatic to me because I really struggle with being patient with him in those moments; I feel a lot more comfortable telling MC to just knock it off. I cannot listen to the rant right now. Rope, dancing, some of the challenges around travel are all pinch points where I think God damn you are autistic. There are ways that Noah really struggles to understand why he needs to explain something in a certain way in order to solve a problem. To be fair I know that I have places where I am absolutely shit at solving problems because I get stressed out and I just can’t do a thing and sometimes those are situations that Noah is preternaturally gifted at getting into the zone and he can just solve the thing. 

It is really hard when I feel like I am in a moment where I have to solve all of the things and the thing I could do to be the best wife and mother in that moment is to stop looking for help or support. I fucked up some steps in figuring out the trip we are on right this minute. (Side note: going to Texas. On a plane right this minute but we will be on the ground when I post this. Noah’s grandmother is in her last days on earth. More about this in a bit.) I did a crappy job of task sharing for the planning and as a result we had a few problems that could have been ameliorated. I absolutely should not have expected that he understand all of the levels of preparation needed but I did. I fucked up several layers of planning because all of the covid shit is a god damn nightmare and I did not understand how hard that was going to be. I landed us in a very stressful position through ineffective planning then I turned and wanted him to fix some pieces while knowing that he is not that effective at remembering/understanding all of the pieces he has to communicate in those situations. 

I need to go back to the beginning on this. It’s rather a complicated story with layers of stupid that are absolutely completely my fault. Booking was really shitty and I couldn’t understand why to begin with. I think American Airlines was just doing a website upgrade and I happened to be trying to book last minute at the absolute worst time. It took a series of phone calls over a couple of hours to research flights and book with points. Going back and forth between different credit cards because some chunks were in one currency and other chunks were in a different currency. I did this booking on Tuesday expecting to fly on Thursday. Wednesday I took off to take YC to her class for the day and track down our car seat. That took hours because we had to ride all over town tracking down the car seat cause the dude who is borrowing it was out of town and his ex, my friend, and I had to ride up a big hill to get the key to his van then ride across town to get to where the van is parked and get the actual seat. It was a very demanding ride and she was a great sport about it but we probably did 8ish miles at the very last minute. It was tiring and I couldn’t be grumpy with her to go faster when I have a battery and she doesn’t. I did not explain to Noah before I left just how many steps we had to go through when I got home. Instead I got home and said “Ok everybody let’s go” thinking we could just go get the covid test for the flight done.

First stupid: I thought I could get a covid test at a local pharmacy for flying since I see ads for them all the time. Turns out that the pharmacy offers that service in other cities but not in our city since we are so small. I figured this out while everybody was standing in the driveway with their bikes while I frantically searched on my phone. It started fucking hailing. Insult to fucking injury. Ok, put the bikes away because in our city literally the only place that does the covid test is the airport and they don’t start doing that service until the hour after the plane I booked us on for getting to London and they were out of appointments for the day before so we couldn’t grab a taxi and head over to do it that day. In retrospect in the moment I realised what I did wrong I probably should have just called AA and told them about the problem and rebooked the whole damn thing. That’s my fuck up. Instead I figured out how to get us to London Wednesday night on a different airline very late so we could be at the airport for tests at 6am so we had a 4 hour window for the flight to the states. 

Second massive fuck up on my part: now I am questioning myself. I went through about 5 different sites trying to figure out how to get the covid testing done and at least one of them said YC couldn’t be given a test so I thought that meant she didn’t need one. Yeah I was completely and totally fucking wrong. She needed a test. I booked the other 4 of us in. If I had booked all 5 of us in then we would have totally made the original flight and it all would have been fine. The lines in Heathrow were absolutely insane because it turns out that Wednesday at about 2 they had a giant fucking software problem and they had to cancel all British Airways flights. Nightmare! We waited in lines so long that by the time we figured out the fuck up with YC we didn’t have time to get on the original flight. We were in fucking lines for 4 hours and got back up to the front about 5 fucking minutes after the time we needed for security and getting across the terminal. The terminal is huge. 

Third fuck up: I should not have sent Noah to negotiate fixing this on his own. We had two reservations and he didn’t bang hard enough on that point so the employee he found who fixed the reservation for the other four of us didn’t fix his part. Then we waited in endless lines again and didn’t figure out the fuck up until we were minutes away from missing the rebooked flight. Holy.Fucking.Shit. AA booked the original tickets (on a BA flight) so BA said they couldn’t fix the reservations or rebook us. We had to go to go over to AA. AA could fix the reservations but they couldn’t print the boarding passes. So we were expected to wait in the multi-hour lines on both sides of the terminal. Fucking awesome. It was a zoo of hysterical people because they were all trying to figure out how to fix up everything that happened the day before. God damn nightmare.

In that last few minutes Noah was actually great and he went right up to the front and insisted the problem be treated like an emergency. That’s not an easy thing for him to do and it’s important to recognise in my head how much he struggles with exactly that type of problem and he came through. The kids and I caught up just in time for me to tell them about the two reservations so they could finally get it right because his explanation wasn’t helping them understand why it wasn’t working. A fucking awesome AA employee grabbed a BA person and said “You are printing this pass. Right now.” Then she walked us through security to get there faster. Thank you Jenny! We got to the gate in time to grab a few drinks because we were all super dehydrated and get on the plane. We didn’t have time to sit down in the terminal. We were at the airport from 6am and we got on a flight at 2:40. We were in lines just about that whole time. The poor kids were really amazing. Noah was patient. I tried hard to be patient and only think my impatience. 

Out of battery.

Alright, finishing this in the hotel room while Noah and EC are sleeping and MC and YC are loudly playing with dolls.

Right around the point we got on the plane from London my watch started beeping at me that it was almost out of battery and I realised I forgot the charging cable. Damnit.

We barely made it through customs and lines in Phoenix to jump on the plane to Houston. Our bags did not follow us to Phoenix. We all sat separately on all of the flights. YC was my buddy, Noah sat alone, and MC and EC said they got through the flights without fighting at all. That’s great. YC did super well; she has no memory of previous travel and her behaviour on this trip shows me really dramatically how different her life has been. She has no habits around keeping her voice down or staying near me in crowds. She does not know how to manage her body so she doesn’t kick other people in tight quarters. She is not used to strangers and she’s really shy in a lot of circumstances. It’s fascinating not being able to tell what parts of her behaviour come from her different personality and what parts come from the different nurturance because our life is completely different. 

Got to Houston and put in a baggage claim report. Now on the computer I am not able to look up anything on the computer. This sucks. I need to call the airport and I don’t have an American sim card so I don’t have a phone for calls or data. We couldn’t pick up the rental car last night because it was closed by the time our flight landed so we took a shuttle to the hotel. I think my next step should be leaving Noah and the kids in the hotel and going back to the airport on my own to get the rental car. Noah doesn’t need to be with me because his American license is expired and he doesn’t have a UK one yet. I will be doing all the driving. Then I need to go buy a booster seat because we can’t take YC in a car without one and I don’t think the car seat is going to show up for days. We also don’t have toothbrushes or clean clothes. This is going to be fun.

Another day, another adventure. It’s probably time for me to get moving.

Pacing

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I am sure there are many people who would not appreciate me saying this: but I miss lock down. I didn’t have to worry about balancing the various needs of my family members with various outside the home activities and people while also figuring out when to get chores done. I slept more and more consistently. Lately my sleep is shit again.

One of the problems with the age spread of my children is that the shape of providing “structure” for each of them is different. Youngest Child is still small enough that she should mainly be around kids through classes and they all want to start mid-morning and last for around an hour before popping the kids out on the other side expecting snacks and a trip to the park. Most parents of children in similar ages are either nearly in nursery or already in nursery and they are specifically training the kids around having the habit of being out of the house 5 days a week for most of the day so the children manage the transition to primary school.

I get it… but I also find that doing that in the morning mostly shoots my wad and I’m too tired to come home and do a big project of my own unless I do it after dinner and give up sleep. If I am out for the morning the mid-afternoon to dinner chunk is mostly me interacting with the older kids around their school stuff and my brain is just not currently capable of doing something for me while I talk to them. Yay ADHD medication? It feels like too tired because I can’t push my brain into doing many things at once on this medication unless I am super well rested.

If I get a good night of sleep and I start my project early in the day then I can normally handle talking to the older kids about a second thing while I work. (Most projects of this type being garden or cleaning related.) I can talk to them about their literature reading progress first thing in the morning while we continue working on removing nails from the old shed boards because we are going to repurpose the wood. But if I try to do the exact same thing starting at 1 or 2 I get confused and befuddled and irritated and angry. My brain says I can fuck all the way off.

So I’m not making forward progress on a lot of the outside projects I want to do since YC started classes and that’s feeling frustrating. The older kids have enjoyed the descent into too-much screen time that happened during my last painting project and they are absolutely loathe to give it up. They really won’t come out in the mid-afternoon and help me. I can push it in the mornings.

This pacing is not working and I feel exhausted and crappy most of the time. It doesn’t help that Noah’s work schedule is hard to figure out and manage. Working for a company that is 5 hours behind us in time zones gets to be pretty challenging.

I am almost to the end of this session of little kid classes. I am going to try and move the timing. If I can get her into classes that are more like after lunch and less like after breakfast then maybe I can get the big kids through helping me instead of getting on video games first thing then fighting to not have to get off later.

I am getting to the point where I am low key signaling distress in ways I don’t mean to and that’s a problem. Fairly random strangers keep asking me if I have any support because it sounds like I have a lot going on. It depends on what you mean by support but mostly… no. I have been shoving my mental health care needs in a box for a couple of years now. Every so often I open the box long enough to shove something else in then I quickly tape over it again. I’m not ok. I know that lots of people aren’t ok and I don’t have it bad in the scheme of things.

I’m not ok and I don’t have a way to cope with that right now. Therapy isn’t an option–I spoke with my GP recently about head injury stuff. In the course of the conversation she asked me how I was overall coping and I told her not that well. I had previously believed that I would be a lifer in therapy then I moved here and that’s not an option. She told me that she thinks I am being very kind to notice just how limited the access to therapy is here and deliberately not put myself on a waiting list. She told me that she has seen me enough times now to have a sense of me and she thinks that any of the therapists in town could be nothing other than a kind and sympathetic ear because they don’t have more training than I do after how much therapy I’ve had.

This is not the first local expert who has told me that I am the best source of support, tools, and tactics for managing my issues and those of my children in this area. Apparently I put those decades of living in the bay and having access to experts to very good use. Every so often one or the other of the older kids has something challenging happen with regard to mental health because they are people and life is complicated. When that happens I ensure that we have privacy and we get into the heavy stuff. Both kids have said, “I’m sure if I tell you about (_____) you will be upset with me.” I tell them to give me a minute so I can fix my face. Then I put on the “I will not judge you; I will be supportive and unsurprised by anything you say because it’s ok for you to be a person on your journey” face. We talk about their big feelings and the situation and why it is both normal and ok that they are struggling. We talk about the fact that it is hard that we can’t hire therapists to be there through these sorts of things going forward. We talk about what things they can imagine doing to change the situation. I ask if they want to hear about any other options I know about–sometimes they do and sometimes they don’t. Boundaries, yo.

I am not your therapist. I will never be a completely neutral party. I will never be 100% on your side because I am often the person you are in the most conflict with. That is rough. But I am not going to judge all of the things you think I will judge. I am not going to be upset about even half of the things you think I will be upset about. And as you get older I will have to be less and less of who you consider when you decide how you will solve a problem. That is the way forward. I am not and I can never be your therapist but I can help you talk out some of what is bothering you. I definitely don’t have all of your answers but pretty often I do have useful questions. I have been very lucky in my life and the state of California made sure that I had access to lots of people who asked good questions.

I need to start writing even if I am afraid of consequences. I am going to be the closest thing to a therapist I have going forward. That process doesn’t work well without the blog. As my Eldest Child says: “When I write something just for me I delete it or rip it up most of the time because it never seems worth keeping. When I just go ahead and post it right away then even when it isn’t perfect I get feedback and I have to act like it was real and I have to carry on forward as if it has happened and can’t be taken back.”

Of course, she is talking about the status of her fanfic and she’s posting on Wattpad so it’s slightly different. I’ve gotta say that her comments are probably more vicious than mine ever are. I worry about the consequences of my writing because working out my feelings is not a pretty process. Sometimes I hurt people when they know what is going on inside me. If I just shut my stupid mouth and stand near them then they don’t know what an asshole I am and things carry on without too big of a problem.

Being real about all the strife inside my brain is scary. I just about always have as much pull towards people as I have push away from them. My magnetic polarity is really confused.

The thing is: I do shitty things to hurt myself when I don’t work through the stuff in my brain. I am long past the point of the kinds of self-harm that would land me in a psych ward but I am not kind to myself. I do not take good enough care. I do things that will cause long-term damage through neglect or lack of love. It’s little, cumulative things but nothing dramatic that will force other people to intervene. I am smart and I don’t want intervention so let me tell you I will stay below that fucking radar for the rest of my life. There is a lot of room under the radar line to hit a bird and have it destroy an engine.

I am not acting like I am a creature I love who needs to be taken care of. That means I can’t model what that means and that’s a problem. I am very certain that I will never again have a person I talk to all the time to help me sort out my brain. So I have to do it. I need to start doing it a lot again. Which also means I need to stop sitting in this damn chair and use the standing desk. That’s going to have to be step one, Krissy.

This feels healthy.

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I think this would have been mostly our approach if we had stayed in California but it is a little bit hard to judge. Over the past few years Noah and I have increased how much we drink for a whole bunch of reasons. We both still drink a small enough quantity that a Scottish doctor will laugh themselves off their chair at the idea that we might have a problem with drinking. But we have a drink a few nights a week and rarely more than that in a night. (Ok, sometimes the drink is stiff.) The older kids ask for tastes sometimes. Middle Child asks slightly more often than Eldest Child and EC occasionally “sneaks” a little bit of something. I put sneak in quotes because she always tells us that she has done it and asks if we are upset.

That has been kind of a consistent theme with her lately. She is pushing boundaries on doing things on her own when no one is around to witness but she doesn’t push that hard or that far and she almost always feels super guilty and fesses up really quickly. Like: I put the baking chocolate/candy in a little plastic box with a 3 digit code on it. She spent weeks figuring out the code then stole some M&M’s. When I finally noticed she laughed hysterically and confessed her prank and immediately offered up more money than the candy had cost to start with. On her own she poured a tiny little bit of the Jammy Red wine and drank it. I believe her that it was a very tiny amount because I didn’t even notice the amount in the bottle change.

The other day MC asked if I would pour them a little bit of the white chocolate liquor that I like a lot. I poured about half a shot glass. They took two tiny sips and declared themselves sated and handed it back with most of it remaining in the glass. EC very much likes a particular brand of cider that I get and when I open a bottle she asks me if she can pour some of it in a cup and share. The whole bottle is 2 units of alcohol and she takes about 1/4 of a bottle. I don’t see a problem with that.

I feel like each kid probably consumes about a full unit of alcohol over a two month period. But they are adventurous and eager to find out what they like and they are developing strong opinions about brands and types of alcohol. Mostly they don’t like the vast majority of strong stuff and that makes me pretty happy. They almost always have a little bit and then say, “Ok I feel that. I’m done.”

I don’t remember seeing anything like this when I was young. When young people got their hands on alcohol they would chug it as fast as possible even when they thought it was horrible. I feel like my kids will be able to go to parties as young adults and only drink if there is something they really like and then not to excess because they are learning what it feels like in their body to just have a little.

Noah and I model fairly conservative habits around drinking. I am not sure when he was last drunk. I really struggle to remember a time when he has ever been woozy or more than a tiny bit extra goofy–but really who could tell when he is such a super dork all the time. (I read him the last couple of sentences and he says he has been drunk and I just didn’t notice because he was low-key about it. Oh, ok then.)

I got super drunk one night by myself super late. I was hanging out in a chat room and I got super silly and it was really fun. Then I went off and brushed my teeth and went to bed and it was a normal day the next night. I also got super drunk night one night when I went off to see friends on the East Coast of Scotland last summer. Like rolling around on the floor singing along with silly songs, drunk. I think that is it since I had kids. I don’t drink a lot.

I worry about this because I have friends who had terrible alcoholics for parents and I don’t want to hurt my children the way my friends were hurt. I am hoping and praying that I am threading the needle on modeling moderation and drinking because sometimes it tastes nice instead of drinking to cope with life.

So much of parenting is this terrible guessing game about “Ok, how am I fucking up my kids?” In this way I feel like we are not doing too terribly. I hope it continues to go well. Of course we are following Scottish law and Youngest Child is not entitled to taste our drinks until she hits the ripe old age of 5.

I shit you not. That’s the rule in Scotland. Children under 5 can’t have alcohol. I guess her next birthday is going to be a real banger. I’m kidding. It is pretty funny, though.

Because I am a loser without a baby book…

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Here they don’t do annual well child visits with home educating families so a lot of the normal medical records I have for the older kids won’t be duplicated with Youngest Child. I was talking to someone about car seat/booster needs so I went and checked on where she is in terms of height and weight. This blog (mostly the parts that are now private) are the only place where I have recorded most of this information so I’ll log this today.

She is 108 cm and 18.7kg tall at 4 years and not quite 2 weeks. According to my reading of the charts that means she is around the 95% for height and about 80% for weight. She is a very solid little thing who runs for most of the day so she has barely the tiniest of pudge on her–she’s muscular.

I think that means she is on track to be in between the older two as adults. Oldest Child has past me up at 13 and Middle Child is getting there fast at 11–I think MC will pass me at 12. If the percentages stay true to adulthood MC will be the tallest, then YC, then EC. I get the general impression that EC will resent this for most of their adult lives. Ha.

If my memory is serving (and I’m feeling too lazy to go look it up) MC has stayed around 97-98% for their entire childhood and EC has always been around 85-87%. YC at birth was only in the neighborhood of 75% but has shot up since.

I mean… we’ll see. I have just done such a poor job of record keeping that I feel like I should write it down when I think of it.

Series of conversation in our house

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We were talking about hierarchy and how it works in different settings. Noah and I told the kids that they are always going to have a hard time truly understanding it because they have grown up with the expectation that they can challenge/argue with authority in almost every circumstance. Then we talked about how we have prepped them in advance for the few times and places where we absolutely will not tolerate backtalk and there is the high risk that if they try to challenge authority in those settings they might get slapped as a way of shutting them up. Specifically this was in relationship to traveling through countries that are not tolerant of queer/trans/uppity pagans and this is not ever going to be a normal part of our life because we don’t do that.

Then Noah went off to work and the kids and I kept talking. I mentioned that in a lot of families the parents present a united front whether they agree or not–they keep all arguments and disagreements out of the view of the children. Eldest Child observed that our family totally doesn’t work that way because we believe that arguing is how to solve problems and find a compromise everyone can live with. I told her that the fact that she believes in her core that everyone in a relationship has to compromise and that arguing is not only ok but mandatory is exactly why Noah and I say that she doesn’t understand hierarchy. I can’t remember what Middle Child said after that but it was funny. Dangit I should have written this a couple of days ago.

I relayed the interaction to Noah later and he laughed and said that our kids are going to need to find Jewish folks to date. I said “Dude we moved to Northern Scotland.” He said, “I guess we are going to need to ship them to Israel for college.” I giggled till I just about burst something.

When I asked no one else could remember the funny thing MC said either. Dangit.

We are going to confuse people so much.

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I’m pretty sure that folks here are already aware that we use “kersquirble” to mean adding sugar and milk to tea to your personal taste.

The other night Noah and Youngest Child were at the table and she asked for a cheers. They clinked glasses and he said “Kanpai!” Then she said, “Cow pie!”

Our oldest kids observed that we are going to confuse people when they come over for the first time and we push the sugar/milk tray towards them and tell them they can kersquirble their tea then we hold up our classes and exclaim cow pie!

But I mean… in jokes are kind of our thing.

Insults in action

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Eldest child has decided that she is one of those ridiculous gamer people who call everyone (including me) “bruh”. For reasons that follow my usual extreme lack of logic this bugs the crap out of me.

Years ago she was saying/doing something where she was trying to “set someone straight” in a sassy voice and I said, “You got that right, sister.” She narrowed her eyes and and did the cat butt mouth and told me that I don’t get to call her that.

So last night when she started calling me “bruh” I said, “If you call me ‘bruh’ I’m going to start calling you ‘sister’ alllllllll the time.” She narrowed her eyes at me a little bit and carefully did not do a cat butt mouth (because I totally made fun of her for that until she stopped doing it) and then said…. “You know… I kind of love that our big name calling exchange is to refer to each other as siblings.” I skipped over and kissed her on the cheek and said “Me too.” Then she smiled and leaned her head towards me for a nuzzle.

ETA: I forgot to write down the funniest part! Middle child said “You also object to mum. Why are you so picky about names?” I said, “Because I’m not into mums. Definitely not my favorite flower.” MC said: “Yeah you aren’t into mums because you like dads!” I said, “Well I am into MILFs but that’s kind of a different thing.” MC looked puzzled but EC exploded across the room with “AHHHHH I CAN’T KNOW THIS” then she bolted across the room to glare at me as I laughed and laughed and laughed. She is feeling super smug lately about how she knows everything that can be made into a dirty joke because she is on the internet. Once in a while I am a twerp and I let her know that she isn’t the only one who can make dirty jokes. It cracks me up.

A while later I almost went up to bed without writing in the five year journal the kids just got me. Big eye roll here. Two years ago they both got 5 year journals in their stockings as a way to get them to practice handwriting just a little bit every day. This year they decided that if they have to suffer so do I. Well then! EC poked fun at me for almost forgetting then gloated about the fact that they will finish two years before me and she’ll be 16 when she finishes the book so I won’t be able to make her start a new one. I countered that oh yes I can. She said, “But I’ll be too old. You can’t tell me what to do by then.”

(Based on a reference to a comedian I watched a bit ago and I repeated it to the kids) I said: “Oh I’m going to be the whitest Mexican mom you’ve ever seen and if you sass me when you are 40 and married I’m still going to send you to your room. And you will go.” She furrowed her brow then gave a deep sigh and said, “Yeah. That tracks.”

What’s funny about that is I think I have only sent her to her room like once in the past two years because she was being unbearable. It’s not like that’s a big part of our relationship. With EC in particular usually all I have to do to let her know that she is over the line is to glare at her. She absolutely hates it and will crumble under the force of it. She still puts her hands up in front of her face so she “can’t see me”. Then she will loudly announce that she can’t see me and thus I have no power over her.

People ask me how often I hit my kids to get them to cooperate. Ha. My parenting is pretty much force of will, baybee. Also super long “discussions” where I explain that I am right and you are going to understand why I am insisting on (thing). For a few more years you don’t have to agree with me you have to obey. Then you’ll be an adult and we have to negotiate more.

Except for sassing me. Then you can go to your room.

If you need to hit your children to enforce your will you have already lost.

I’m allowed to be frustrated but I’m not allowed to be angry

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I wanted to get started on the bathroom stuff in June. I specifically had the thought that if there were delays: hey at least no one minds spending a lot of time outside and avoiding the house when it is a disaster. The contractor wasn’t available to start until November. He started on the 24th. He thought he would be done by the week before Christmas.

Then it turned into outsourcing a bunch of pieces because he hates doing those bits. Their schedule needs became a conflict. Getting accurate lists of everything that should be ordered… is literally impossible. And now things weren’t ordered when they should be and stuff could’t come in until January. I am so very very very frustrated.

Oh, now the contractor is very sick. Deep breaths. Can’t be angry. This is just life.

My bedroom and bathroom tile is done. Yay! That’s worth a celebration. The painting in there is far from done. Roughly half the walls in the room still need a plaster compound skim coat due to the removal of icki wallpaper. The plaster guy is just flat not returning my calls. So I ordered a handful of tools. I’ll be teaching the kids how to do the work. We aren’t supposed to walk on the floor today because grout is setting. I probably *should* stick a heater in there because that will help.

That means I can walk on grout Thursday/Friday/Saturday. On Thursday and Friday and Saturday I can also work on painting the walls that have to be painted first (specifically: the walls where shelves will be attached to the wall and the wall with the glass door, oh and I guess finishing the ceiling would be wise.) Technically I’m allowed to move furniture back in as of Friday but I think it is smart to wait till the plaster sanding is done on Saturday. Deep sigh. I am going to move a lot of the furniture back in pretty immediately. Well, I can do primer on the unfinished walls on Saturday after sanding–there doesn’t have to be a big time gap between those activities.

Then the return of furniture! Of course first is the bed. My lovely bed. My wonderful bed. My bed that means that maybe I’ll get to have sex again. le sigh I do like me a closed door. I will put as much of everything else in there as I can while leaving access to painting wall space. It will be nice to have the furniture in near where it will go because it will help me remember where I don’t need to be intense. I’m stealing one of the white boards from the kitchen so that I can have a visual reminder spot that I can’t put down/lose in my room too. White boards are awesome. But I don’t need to do a lot of fancy painting behind it.

For the bathroom I’m thinking the wall that faces the shower will have a pretty serious tree with holes for various kinds of birds and fairies to live in. I think that a branch will come over the mirrors and have a nest on it with pretty speckled eggs. There will be birds flying in the sky up on the ceiling. Maybe even fairies dancing if I can figure out the perspective. Low grass and flowers down at the bottom and in the doorway.

I’ve already painted a fair bit on the ceiling. A couple of them are highly abstract in a way that will lead to many many guesses and possibilities over the years. One is (pretty fucking clearly to me) a vulva because vulvas are AWESOME. My kid says, “Hunh… I have no idea what that is,” hahahahahahahaha. I added a heart with the word forgive dotted inside it but it’s heavily obscured and I think it will only be visible at some times in some lighting (totally my goal). There is a flower because I love flowers. There is a symbol for finding gratitude that I didn’t quite finish because my neck was very angry with me. Over the bed I intend to put a sigil for encouraging peaceful sleep and banishing nightmares. I have room for a couple of other cloud symbols but I’m not sure what yet. Hm.

The office nook will have very little available space for painting. Above the computer monitor area I am going to put the pagan three moon symbol. I might do some vines or other things growing up in the space between furniture but mostly I will just paint the walls solid green behind the furniture and call it good. And by “solid green” I mean dappled greens so that it doesn’t look like some wacko who believes in one color for each wall took over my room.

In the narrow corner above my bed next to the window I want to do a wheel of the seasons. A reminder that change is always always always coming.

I’m still not sure what I want above my bed. That space feels very important and I can’t visualize what it ought to be. The side of the room with the dressing area and the exercise equipment storage will be all Mother Goddess and Greenman energy. Lots of bright colors even though it’s supposed to be midnight in a fairy glen.

I’m having fun.

What is it about me?

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Recently someone who, about two decades ago, asked to be my Leather mom tried to friend me on facebook. I actually unfriended her about six months ago because I was weak when she came around a year or so ago when I filled out my facebook profile more and included California people. I unfriended her because when I see her posts about how terribly she misses her daughter and how the lockdown was traumatizing to her because she can’t see her baby it cuts like a knife. It jumps up and down on my old buttons about how other people deserve to be loved and I don’t. So instead of being an asshole I just unfriended her.

I uhm was not as nice this time around. Instead of ghosting her I let her know (with a fair few words) just how much she hurt me and that continuing to stand near her at this point makes me think about killing myself and I just can’t do that anymore. She responded with ethos and just how broken she is now and an attempt to gain sympathy and support from my end. I am not going to respond. Because if I did it would be something hostile about how she fucking dumped me years before her partner died so if she is broken in the aftermath of his loss I don’t fucking care anymore.

This is like my mother expecting me to start handling all of her financial needs when I was 18 and I got the accident settlement. She didn’t really raise me–a whole series of foster placements kept me fed and clothed and not homeless. But hey I owe her because she is so needy and she’s my mother. Naw. Fuck off.

Many years ago now my Leather Dad told me that he’d be happy to let my kids call him grandpa but I needed to keep in mind that he wasn’t going to do anything to help me because all of his money and support and property was going to his kids. Then a couple years after that he asked to borrow $10,000. We worked out a loan agreement and I gave it to him and he paid me back. Then he came back asking to borrow $25,000. For someone who was absolutely fucking clear that he wouldn’t help me he sure expected me to help him. I said no the second time.

I talked to a good friend about how they are the only person Sarah has lived with who Sarah doesn’t owe money because they didn’t charge Sarah rent. When Sarah broke up with me she had effectively stolen money from me; it was put in an account to buy groceries for the family. A couple weeks later she had a plane ticket to see her sister’s graduation and she needed more money for groceries. This was never really discussed because if I got angry with her then she would tell me I have Borderline Personality Disorder and she can’t deal with me because I am triggering because I am just like her mother.

They say that extreme independence is a sign of trauma and it’s not a good thing. I’m told that me being a bit on edge and not 100% trusting Noah means I shouldn’t be married to him because I am being abusive to him. Basically what that means is because I am a traumatized person I should be alone for the rest of my life–hey independence!

For reasons I don’t really understand he thinks that having this much of me is better than having none of me.

Recently I read something that I found interesting: The Unified Cutlery Theory. I feel like over the last two months I managed to turn the corner and all I have are knives. I posted a while ago about doing well and I think that was a stupid thing to do. I burst my bubble.

An affirming phone call

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I want to write this down so that in the future I can remember this feeling. I talked to a buddy in town yesterday; she works in special education in an autism class. This is sometimes complicated for her because her training is entirely in language teaching (usually foreign language to mainstream kids) but this was the job she could get around here. She has been given very little additional training/teaching so she is figuring it out as she goes and reading books on her own to help her in her job. Also worth mentioning that her daughter is Middle Child’s best friend.

We talked a lot about what I’m seeing and what I’m trying to figure out with regard to helping MC. We talked about the areas of severe academic delay (specifically: MC is effectively reading about 4 years below grade level and writing 5-6 grades below level) and the complications that occurred in the classroom when MC attempted to go two years ago. We talked about dynamics in our house around chores/getting stuff done.

She was very clear that she didn’t have a lot of specific advice but she was a sympathetic ear and she talked through her experiences working with families in her classroom. She understands why I am not super keen on pushing more in the direction of the National Autistic Society help and why I have the worries I have. I talked about Auntie who is in her 80’s and has her three adult children living with her because none of them can take care of themselves and live independently. I talked about my brother Tommy and the way he physically abused his entire family and why the tantrums/violent outbursts are so triggering for me.

Side note: in the past couple of weeks it has come to my attention that pretty much all of the friends I have met here have basically no idea that I have/had siblings and they know nothing about my traumatic family background. I made a couple of comments recently in context in conversations in completely different groups and they all responded with extreme shock and complete surprise. “How have I been talking to you for this long and I had no idea any of this happened?” Well… I don’t trauma dump anymore. I don’t share my mental state by and large with newer friends here. It isn’t relevant to mention any of these things if I’m not going to talk about anxiety/depression/trauma. So I don’t. This is part of my strong feeling that I am never again going to make a close friend where I talk about the really hard stuff. I will have surface friends and basically shut the fuck up about my brain going forward. It’s not safe to talk about. I can no longer absorb the consequences of being honest.

But I do sometimes need to talk about educational stuff and I need some amount of support around that. We talked about classroom strategies that she uses and how functional/useful they are for my child. We talked about the possibility of Youngest Child going into school here and the likely outcomes of that.

It is her professional opinion after working in special ed in local schools for several years that my children really are better off at home. The resources are thin on the ground and are only available for the most extreme cases. MC has already been on a waiting list for assessment for over two years and it could be another year or more before they are seen. YC would be looking at four or more years given how the waiting list has expanded over the past two years and possibly more like six years. The resources for private assessment are many hours away and their waiting lists are closed because they will not be able to get through any additional patients any year soon and they don’t want to have a waiting list that goes beyond two years. When they do reopen their waiting lists they will have a strong preference for siblings of children already in their system. Even if/when my children managed to be assessed there are very few resources available for kids at their levels. (She knows my family and is comfortable stating that.) Autism resources are only available for kids at the most extreme/non-verbal end. AHDH resources are pretty much limited to medication or being taken out of a mainstream classroom and not taught much. Other Pervasive Non-Verbal Learning Disorders are pretty much ignored entirely.

She and I have had many a chat over the years about our classroom experiences with special needs and the differences between what is given to 504/IEP kids in the bay area and what is available here. She contrasts this with what is given in her native (other European non-English speaking country that I won’t name for a vague gesture in the name of privacy) country and she is of the opinion that my level of training is higher than any co-worker she has ever worked with. She thinks American understanding of education and specifically special education for disabled kids is head and shoulders higher than anything available in Europe. She is stunned by the sheer variety and kinds of books I have read in order to be a more appropriate teacher for my children. I had previously mostly focused on the ADHD/dyslexia/general atypical neurodevelopmental needs reading stuff in conversations with her.

We shared the perspective that there is a very careful balance with special needs/disabled children and adults between giving them the help they need and enabling/infantilizing them to the point where they fail to learn skills that would allow them to be more independent as adults. When you are in the family you lack the objectivity to see the larger arc and how your actions are impacting your family. When you are in the classroom/an outside observer you lack the ability to see all the nuances and decisions that are creating the entire situation so you are ignorant of the full reasoning behind what is happening and whether it is necessary or not. We talked about how difficult it is for parents to hold the line and insist on many of the pieces of development that work towards independence because fighting every battle all day long is exhausting.

Then I said “And I get to be the parent and the teacher and be with my children for nearly all of their waking hours! It’s great!” She kinda choked for a minute and then gushed about how amazing it is that I do what I do with my kids because she sees the results and she sees us interact and man do I keep it together.

That was so fucking validating. She hosts MC for sleepovers pretty regularly. Her daughter is an only child and she’s pretty happy to have a friend over quite a bit. Her daughter has other local friends but has an easier time with MC than with a lot of the kids from school because my buddy and I have fairly similar perspectives on manners and appropriate ways to interact. Because of the one on one social dynamic and the fact that MC is highly motivated to be liked by people outside the family MC really shines in these visits as they get to show off their pride in being able to help with household chores and how to speak with people.

It’s really fascinating seeing how my personality plus my parenting techniques interact with my childrens’ personalities and needs. MC has a very strong basic need for control and a lot of anxiety around demands being made of them. However they have been raised in a 24/7 environment where there are very specific high standards about how we talk to one another and “we are workers, not shirkers” is the family motto so they have adapted their need to not be directed in somewhat surprising ways. The PDA profile fits them to a T and I can go down the list explaining all the ways they resist/avoid work… yet they still manage to do a significant amount of work because of the desire to be a “good citizen of the household”. It’s complicated/complex.

MC has very much internalized that a lot of the ways I am strict/intense in my demands are because of my internal terror that I will fail them as a parent and they love me; this makes them spotty in how they learn and follow through on what I ask but there is this undercurrent of wanting to try. They may take 6 fucking hours to sweep the kitchen most of the time because it is not ok with them on an internal level that they are being told to sweep the kitchen but when they go to someone else’s house and they want to show off they can do it in 5 minutes and tell their little friend all the specific tricks that make it easier/faster because they get to feel like a teacher and they fucking love that.

Hunh. I just had a thought. I kind of wonder if MC is going to finally be interested in learning to write when they get to feel like they are showing YC.

It is quite a challenge to get them to practice reading out loud to me but they do love to do it with YC. When they babysit (more like “mother’s helper” because everyone else is in the house but distracted with video calls or taking a bath) they do a lot of reading/talking about learning. Very much “Having someone read to you is the best…. let me show you.” So much of my teaching approach relies on careful observation and figuring out how to turn my kids personalities to my advantage. That and one to one teaching gives a level of intimacy that simply cannot be matched in a larger classroom. That is not a slam on classroom teachers in any way. I was not as good of a teacher to anyone in particular when I had 150 students. I did my best and it wasn’t what I can give my children.

I feel so much insecurity and anxiety about whether or not what I can give is good enough. I worry so much about letting my children down. It does so much to increase my confidence when I can periodically touch base with another teacher/educator and I can go through my approach and methodology. I do have a fairly extensive education when it comes to child development and what different special needs entail. I have worked very hard on understanding theory.

Towards the end of the call I said, “Something I am very conscious of with regards to my teaching and parenting is that I literally have more will and force of personality than most people. If I believe I am doing the right thing it doesn’t really matter how hard it is or how much time it takes I will do it. It is part of how my brain acts out hyperfocus. When I feel secure that I’m doing the right thing I have just about unlimited energy. I know that if my children were in a classroom they would lose out on that for a big part of their educational support because teachers by and large don’t have that intensity for a myriad of appropriate and healthy reasons. My kids do have special needs and I knew they would before they were born and I am fully committed to doing whatever I have to do to meet them. It is just hard and scary when I feel like I am flailing and I don’t know what to do.” She said that matches what she sees and my kids are lucky to have me.

I feel a lot better after the phone call. I do cycle through novelty. I do renegotiate how things are taught and what things are taught. I do hold the line on “You have to learn a basic level of functionality in order to be an independent adult and we are going to get you there.” I do push/encourage my children through learning and growing in ways that overall result in them liking themselves the vast majority of the time. Even when my kids struggle with anxiety there are usually pretty obvious organic/social reasons that I am not directly to blame for (obviously with the exception of genetics). I am not mean to my kids. I don’t beat them down. They are pretty happy and healthy and secure. Even when they are struggling for a while it is usually in ways that are predictable and appropriate developmentally and I help them pivot towards the path they want to be on.

I am not the shitty parent I sometimes fear I am. I am not perfect because there is no such thing. I do pretty well though. I refuse to stop learning and growing and increasing my ability to meet their needs. When I fail for a while I use that as motivation to push through towards a deeper level of understanding so I can better succeed as their needs change as they grow.

Part of the modeling I want to do for my children is showing that these periods of disequilibrium mean that you keep trying and learning and growing. You don’t give up and declare yourself a failure. As long as you are alive you have the chance to keep growing. Don’t give up on yourself. If we aren’t going to meet my personal goal of having my kids basically ready for complete auto-didact learning to finish the growth necessary for adulthood by 13 that doesn’t mean you can’t hit that mark by 15 or 18. It’s ok that you need the growth curve you need instead of the growth curve I had in my head as ideal. That is not a failure. It is a miscalibration and we’ll just keep going.

Frankly the way that MC needs to reassess every few months and needs a tremendous amount of novelty in order to keep doing things… looks like how I have managed my adult life. I go through intense bursts of focus in different areas. I have to restructure chores and tasks and hobbies regularly or I burn out. You know what? I’m not a failure. I do cool stuff.

MC will too.

Maybe that’s it?

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It’s not a secret that I have long had struggles with my middle child. I adore them and love them and worry a lot about whether or not I am doing the right things for them. I tried to get them evaluated by Stanford before we left California and they got a 15 minute yes/no questionnaire that wasn’t at all useful for data on understanding them. I was frankly pissed off. When they enrolled in school here after a month the school asked for permission to refer them for extensive neurological testing because something is going on. We’ve now been on that waiting list for a bit over two years and every sign points to the likelihood of it being another two years before we get answers. But kiddo is rapidly running into puberty when everything is going to get exponentially harder. My window for effecting major change is closing.

Due to all of that I’ve been doing more research. I am heading in the direction of Pathological Demand Avoidance. (Sometimes referred to as Excessive Demand Avoidance because pathological has a bad reputation. I mean… the definition isn’t awful. The word seems appropriate. I get that colloquial associations can be complicated.) It’s not really diagnosed in the states, this is a UK recognized syndrome. But holy shit when you read up on it: https://www.childrenandfamilyhealthdevon.nhs.uk/wp-content/uploads/2020/05/pathological-demand-avoidance.pdf Oh. That’s my baby. I read it and felt strong recognition. I showed it to Noah and he could illustrate each section with repetitive conversations we’ve had in the past. I read it to kiddo and they said, “Oh wow. That sounds like me.” So whether or not we ever get to an official diagnosis we are treating that like Plan A going forward at this stage.

This has some potentially wide ranging implications for the future. How we home educate needs to change pretty broadly because neither of us can handle more years of crying all the time from frustration that they just won’t fucking do as I tell them to do. We need to find new strategies for figuring out how to get stuff done together and separately. And frankly my plan had been to use our investment money till we die and have the will put everything left towards charities. That may… not really be an option if my kids are not going to be 100% able to support themselves and work. I’m still in the preliminary stage of course but I’m looking into stuff written by adults with PDA and mostly they are not independent and able to work.

(Very briefly if you don’t want to read the whole description on that web page: Pathological Demand Avoidance is very related to autism but there is no certainty whether it does or does not fall under the Autism Spectrum Disorder label. It has enough specific quirks around sociability that it seems to be related but not the same. It is a syndrome where anxiety is the dominant part of the difficulty and the stress of being told what to do is so intense one shuts down. By golly if that doesn’t describe my baby. I’ve been saying for years that when they have a list of things to do the most likely way for them to spend the day is staring at a blank wall, numb. Or huge violent tantrums. It’s a wild card sort of option.

I don’t say any of this to complain, criticize, or put them down. I am looking to understand better so I can figure out how I need to change my parenting so my child can have the maximum level of mental health and support available. If this is what is going on I want to see what needs to happen so they can thrive not so I can figure out which levers to pull to make them change. They are who they are. I accept them and love them. But I have clearly not been handling things in the best way and it’s a problem and it needs to change. We both feel bad a lot of the time and I believe with my whole heart it doesn’t need to be that way.

We are both smart. If we understand what direction we need to head in we will figure it out. One of the ways I am that I believe verifies my own autism diagnosis/autistic personality is that I need to have a set of rules/labels that tells me how to behave or I flail and I experience a fair bit of distress. If I can figure out what label is most accurate then I can do research on what works best then I can act it out. Work with what you’ve got and the whole thing goes better.

More

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Column 1, Column 2, Column 3, Column 4--
1, 2, 3, 4--
1, 2, 3, 4--
Why is there always so much more?
Pick a task, any task, keep going, there's more--
It doesn't matter if you feel like falling on the floor.

Keep going, keep going
don't stop; no slowing.

I am sore
but there's more

Column 1 is the kids and the schooling and their needs.
Column 2 is the house and the cleaning and the garden and the seeds.
Column 3 is for me the people and the art I want to see.
Column 4 is for Noah keep the marriage out of the weeds.

1
     2
          3
               4

more
more
more
more

I'm so sore
I just wanna lie on the floor
I feel like I done tore
All the life is just seeping out of my core.

Bleeding is feeding the seeding to come.
This is the time to hibernate with the sun.
It is ok to lie down and not have any fun.
It doesn't mean you are broken or deficient or just the sum
of the days when you could not get anything done.

Maybe it is not depression per se
Maybe the body is just having it's say

You have spent every drop of give for this year
It is time to lie down without any fear

You did enough.

The snow is falling and blanketing the earth
Sit down and be quiet and read books for mirth
If you take time to heal you do not diminish your worth.

If you want to do more then you must heal.
Heal your arms and your hands and your legs and your heels
your back and your neck so that you can feel
strength return with each sedentary meal.

Rest. 

No more.

Go find a book.

When the snow is falling sit and look.

That's enough for now.

Spring is coming with it's relentless push for seeds and soil feeds and paint on your sleeves.

For now: just rest.

This has been beating in my head like a drum for about two days. This period is a real humdinger.

PMDD is so awful

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I am on day 42 of my cycle. I start running low on hormones around day 26/27/28. I usually start sometime between day 28 and day 35. It’s been pretty consistent since the last kid. I am… not ok this time. I can feel the complete and total lack of energy or happiness or give. My bones feel worn out and terrible. The numbness in my hands is super bad at this point. I know that a lot of that is how much I’m painting but progressively over the last week it has gotten worse and overwhelming and awful.

My whole body is hurting. I haven’t had many spells like this since I moved here. This is a California-level of pain. I feel sad and irritable and angry and disappointed in so many people and situations and results that I feel unable to cope. I am not suicidal; which is a blessing–that doesn’t darken my door much anymore. I just feel like I’d like to crawl in my bed and cry for a few days until my period starts because I am completely out of cope. In the overall scheme of things that is a relatively healthy and sane impulse and I feel proud that I am in this place now instead of where my lows took me ten years ago.

It is weird being able to list things that I miss about California and reasons that there were advantages there that I don’t have here… while completely knowing that I am overall doing better here than I ever have. Do I still have pain? Yes; particularly when I am drifting back towards California-style work habits that I know are dramatically not good for my body. Do I still have some anxiety? Yes; my anxiety here is so different. I can’t put a number on this to do like a “rate your pain” scale. Knowing that I will never run into Dan or Paul or my mother or my sister or Auntie or Anna or Brittney or or or or or means that I no longer live with hypervigilance. It’s not that I believe that nothing bad can happen to me I just fully accept that scanning the room for exits is not going to be helpful in any of the bad things that happen to me going forward. I can’t tell with a casual glance who is going to be a problem so I just… don’t.

I mean, when the dude got out of his car to yell at me and smack my hand I didn’t freeze up or start crying or react poorly until after he drove away. I stood my ground (in a suitably gun free manner) and I defended myself verbally and I took his picture. I did what I think I should do. And now I don’t scan looking for him or his car because I am pretty confident that if he ran into me in town and harrassed me again I would simply call the police and tell them we had another problematic interaction and he would get in trouble. They put a mark on his record.

I am living in a small town where the police get upset about that kind of thing between strangers. It is still hard to solve between neighbors… but that’s a whole different dynamic. Stranger assault is prosecuted.

I’m anxious about saying the wrong thing to people I am trying to make friends with. That isn’t gone but it is different from California. I find it intensely healthy for me to be consciously aware that people here don’t owe me anything. I haven’t been doing things for people for years with the hope that someday things would shift and they would support me when I needed it because they love me. That’s very freeing.

Even though typing this is terrifying for me I’m going to do it because this space has to be for me if it is going to work. Even things with Jenny have leveled off and found a comfortable stasis. We are not trying to live in one another’s back pockets because we are both cat-like and we like a lot of space. There are topics we kind of avoid because it feels like those aren’t the best ones for us. It’s feeling really comfortable and happy for me. I can only project and not speak like I really know how she feels but she isn’t expressing any dissatisfaction with our relationship. I feel like I pushed too hard when I moved here and we had to work out how to deal with each of us having our prickly points and it has worked out. She remains one of the people I love most in the world. I would bury bodies for her. If something catastrophic happened I would absolutely rescue her or her kids or her husband. I believe with my whole soul that she would show up for me in an emergency. I am feeling safe and comfortable that we have managed to find a nice place between us. I suspect in 5-10 years when our kids are older we will see each other a tiny bit more than we do right now but we are both people who are very comfortable in our own company and that’s not a bad thing.

I’m slowly working on other relationships in town and that’s slow going and complicated because people are like that. I like living here and I think it is going to be a good space for me in the long run. I worry a little about Noah’s place here because he is a lot more constrained than I am in terms of going out and meeting people. He’s going to need friends in the long run too and having them all be on his computer is mixed.

Kids are a pain in the butt. I’m just saying. This has been a bad week for me in terms of my emotional state and that’s no one’s fault. Also: my kids have been buttheads a few times and we’ve had words. I feel so intensely proud of myself because we had words. I didn’t shout. I didn’t scream. No one was punished or denigrated. “Hey this thing is happening and it’s not ok and we need to talk about why.”

Ok, take a deep breath and really feel that. Even when I am upset and I want to freak out because of hormones… we talk. I say, “Hey let’s explore some of the angles you aren’t seeing on your own right now.” When we are done they understand why I am asking for a change (it may or may not happen–let’s be real) but they aren’t angry with me for bringing it up. I understand more about why it’s going on from their perspective. It’s not ok to just silence people when they are inconvenient. Children aren’t problems they are *having* problems and talking about why is important.

It is so hard that my older kids are very much in a place where many of their problems are now things I cannot fix because it isn’t about me. The main upside of that is they are starting to feel in their bellies that it is true when I say the same thing about my problems. “I’m not upset about you. I’m having a problem.” I can see Little Girl struggling through what the older kids went through and she is directly acting out her stuff with her dolls and it’s interesting. I feel so much more emotionally/mentally distant from the process now than I did when the older kids were that size. I will roleplay with her with her dolls.

So yesterday morning I woke up and I felt awful and I cried some. It’s not because anyone did anything. Then Little Girl came in and joined me for a snuggle and she does this thing where she likes to dig her feet into my legs. Sometimes it is ok and sometimes my body hurts and it is super painful. I was already crying so of course she felt bad and took it on herself. Later she had a whole scene with her dolls where she was talking about them hurting her by poking her legs so she was putting them in time out because it’s not ok to be mean to her. I roleplayed one of the babies and talked about how I wasn’t trying to be mean; I was trying to be close because I love her. Is there a way I can be super close without hurting her? I am scared to go in time out right now because that means I broke a rule and I don’t want to feel like snuggling is breaking a rule. She was so kind and loving and caretaking with her baby. It was really wonderful to watch. “Oh my gosh! You are right! Snuggling is not breaking a rule. Maybe we should change where we are snuggling so that you don’t hit my legs and hurt me.”

My grinch heart grew three sizes.

(At this point pretty much the only rule she breaks is screaming in the house and you have to take big voices to your bedroom. This is not California and I can’t insist that all screaming has to be in the yard because of weather.)

I don’t talk about the big kids much anymore because they deserve privacy and walking the line is complex. But I do want to say that it is fascinating to me just how much they still ache for my approval. (They get a lot of it–I’m not saying this is a hollow thing.)

My Oldest Girl is pushing so hard to individuate and good golly hormones have hit her like a freight train and she has so much hostility about injustice and difficulty in the world. Saying good morning at the wrong time is fairly likely to get a stiff middle finger. I go with it. I try hard not to take almost any of it personally. We are dancing around the balancing act of “I’m still your mother so sometimes I am going to be obnoxious and I will want to give you a hug and a kiss. If you truly object in the moment you are allowed to refuse but mostly it’s a good idea to let me do it.” She is doing a lot better in terms of mental health since she stopped going to school. Things were getting really bad for a while there. We come from families that have a lot of depression and anxiety and PTSD and suicide. It would be highly unethical and neglectful for me to not act quickly when I can see my child melting down because of abuse they are receiving. She is starting to blossom again. She is returning to herself and I love seeing it. It’s going to be a process for her to find friends here and school is not going to be the solution. Her art blows my mind. She has so much talent and skill and she practices all the dang time. Her writing is fun and engaging and she is absolutely brilliant at creating pictures in your mind of what is happening to her characters. She still needs a bit more work on exposition but that’s not a terrible lacking–just something to think about and work towards a bit more. She is strong and fit and confident and willing to speak up for herself. And she’s taller than me and built like 30-something Taylor Swift and I cannot even.

My wonderful and delightful Enby is still plugging along. Puberty is happening and it’s a roller coaster. It’s interesting how the acting out is different now from when they were younger. They have so much more self control than they used to have. They still have giant feelings that are hard to manage at times but they know which direction they are growing towards/working on when it comes to expressing those feelings and they are consciously and deliberately learning skills around that. I am so impressed by the effort they put in to being self aware. They are baking and cooking and tweaking recipes and being brave and adventurous. I am sad we didn’t get a better evaluation done at Stanford before we left because they clearly have some specific learning challenge going on and I’m struggling with figuring out what it is. They really have a hard time with some aspects of education and we are trying a few different things because I don’t know what direction is the right one. They are making progress but I think they are always going to be a person who is much better with kinesthetic and active and oral learning rather than on paper learning. It’s really cool watching them learn coping skills around that. They want competence and if they have to route around an area of challenge for that… well just get on with it. They alternate between being this absolutely startlingly compassionate person and being a normal kid. I see them being on this see saw towards adulthood and it is so clearly part of the process they need to follow. They progress intensely then they regress a bit then they leap again. The more patience I show and the more scaffolding I supply the bigger each leap is and the smaller the regression. If I am impatient or difficult about the regression then it intensifies and they can’t leap again for quite a while.

It is fascinating living with these children. The Oldest doesn’t need my approval all the time–once in a while she succeeds in order to spite me. The Middle craves approval like it is heroin. They will beg, borrow, steal, to get it. They do not function well at all if I am anything other than a full throated cheerleader. Rebukes and course corrections have to be delivered with the softest of touches or they wilt and don’t recover for days… sometimes weeks. The Littlest is so small that she still needs tons of redirections towards “Oh hey it would be great if you….” “Oh golly if you do x then y will happen and that’s not good.” I suspect she is going to be more on the spitfire end as she grows. Her threenager year has been so very long.

This post brought to you by the good news that one of my buddies now works in the paint store and he is encouraged to give a friends and family discount to people and basically no one he knows buys paint. I was talking about the sorry shape of my arms right now and how I am pushing myself raising the clock before the paint dies and he told me to take a break. It won’t be nearly as expensive of an issue to fix as I fear. Ok. I will listen.

So I stopped painting a week before my purported end date. I have a ton of other work to do that has been sliding through the cracks. This will be in no way a bad thing. I am exhausted in a way that means I am not sleeping enough because I can’t shut my brain off to sleep. I’m craving alcohol like mad. I think at my next cycle of talking to the GP and psych nurse I will say that I think I am ready to both increase the Amitriptyline and the Lisdexamfetamine.

I am still on very low doses of both and getting closer to a normal dose would be useful at this point. My blood pressure readings are so so so much better on 30mg of Amitriptyline. I’m back in the high 120’s-low 130’s/high 70’s-low 80’s. There is still room for improvement but that’s not dangerous or scary. More Amitriptyline would possibly help with that. Losing weight would probably help with that.

These medications are breaking the stalemate of my weight plateau. I’m still eating whatever I want whenever I want. I am drinking some alcohol (in the range of 4-6 units/week because I know drinking is not recommended on these meds) but not nearly as much as I was. I am not doing tons of exercise because I have been in the house painting all the time but I am still doing the twice weekly yoga and I’m riding in the neighborhood of 20-ish miles a week and even occasionally getting in a decent length walk. I’m not sedentary but I’m not over-exercising in a way that would cause weight loss. So I really believe the drop is as a result of the medications at this point. I didn’t think to weigh myself right when I started the medications. The first data point I have in this year was in February and I was 211. In late August I was at 203. As of this week I saw 199 for the first time in a long time. I repeat: I am not dieting. What I am doing is taking medications that change my brain chemistry and increase my serotonin changes how my brain processes dopamine. That’s making my body not feel like it needs to hold on to fat in the same way. I’m not doing this because I want to lose weight; I am noting physical changes in a way that can be measured. Things like mood are harder.

The PMDD window is something that can overcome the positive effect of any medication in my experience. I am seriously dreading the peri-menopause experience of my cycles gradually lengthening. I expect the next ten years to be hard. But it’s not like any decade has been easy so get on with it. I am deeply grateful that I have gotten to the point where when I feel really low that does not increase suicidal ideation or fixation. I am grateful that I don’t struggle with the desire to mutilate my body anymore. It is complicated as fuck dealing with my children as they have times of feeling like they want to hurt themselves. I am grateful to the marrow of my bones that they know they can trust me and talk to me when they feel like that. Yes, you can always come in my bed and snuggle if you feel you are scared and you aren’t safe to be alone. Puberty is a horrible time and we’ll talk and we’ll get you through this.

If therapists were available they would be in therapy. I didn’t understand the depth of privilege we had in California around mental health. My entire life trajectory happened because therapy was plentiful and that would not have been possible in other places. All my kids have is me. That’s fucking daunting. (I mean, they have friends and we are making community connections…) We talk a lot about having thoughts and feeling impulses doesn’t mean anything bad about you. Let’s talk about the possible consequences if you follow through. I’m not saying I will punish you; I’m saying that once you cross the line into these behaviors there are people in the community who are bound by law to intervene so if they find out this is what will happen. It’s out of my hands. Let’s talk about strategies and ways of coping and figuring out what other things could be done instead. Let’s build habits around feeling distressed so that when something even worse happens you have some pre-built ruts in your brain for how to handle bad things. Let’s talk about distorted feelings and projecting and learning how to scan your central nervous system and what tools exist to help you feel grounded and like you can wait to act–this feeling does not require a response RIGHT NOW. For the record no one is actively suicidal, no one has any kind of plan, and people are not engaging in the sort of behavior that would involve mandatory removal from the house.

What is happening is that they both have had to deal with bullying and additionally people have been telling my daughter that she should kill herself. They are both just children and this has been hard for them. They have every predisposition genetically towards mental health struggles. Life was never going to be a walk in the park. There were always going to be dark times. But you can bet your fucking buttons that I am going to teach them how to light a candle in the dark. (I got some LED candles so nobody else tries to burn down my fucking house. Oh good grief.)

They are kids. They are all so different. I like all of them. I am annoyed by all of them. I admire all of them. I enjoy spending time with all of them. I don’t know what their future will bring but I sure hope that I get to be an enthusiastic cheerleader as they go do all the things they will do. I tell them that when they don’t believe in themselves they can borrow some of my faith in them. I will never ever run out.

More medication changes/observations.

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The last time I posted was 2 days after I lowered the Amitriptyline as an experiment. I am talking to my doctor/psych nurse about all of these changes before I do them. It’s kind of weird having a medical team that I call up and say “Hey I want to try x. I will report back on how it goes.” They respond with, “Cool. Let me know how it goes.” I am not used to American doctors being so chill about someone playing with their medication dosages. In emoji terms: 🤯

I had almost three weeks of being on the first step of Amitriptyline dosage. Very quickly I noticed: my mood getting lower (a lot more intrusive obnoxious thoughts during yoga–amusingly), sleep became really hard (the last three weeks I averaged 7.5 hours of sleep when I’ve been otherwise averaging over 8 hours a night for the past few years), I started craving alcohol a lot (back up to probably 8-10 units a week after only 2-4 units/week for the previous month or so), I was more interested in late night snacking, I had several very late night painting sessions because going to sleep just didn’t feel important, I needed more Lorazepam to sleep, my general pain levels were sky high, and I was using more Co-codamol. Oh hey and my blood pressure went from being usually in the 120’s-130’s/80’s to being mostly in the 140’s-150’s/mid-high 90’s.

That’s some forking data. (I mean… sorta anecdata but I have spreadsheets where I’ve been documenting this day by day…) It’s not like I’m trying to apply this population wide or anything.

I talked to my psych nurse two days ago and told her I do not think this is a good time to increase the Lisdexamfetamine because I need my blood pressure under control first; then I talked to my GP yesterday and told her that I think the next step is increasing the Amitriptyline for a month and seeing what happens. They both think my suggestions are dandy and that’s plan A. We will all check in next month and see how things are going.

After another month on the Lisdexamfetamine I am 3.2 pounds lower. That is a very gentle and sustainable amount of weight loss compared to the roughly 10 pounds I lost in the first month. I mean… I’m still 40-ish pounds away from where I feel like my body feels the best in terms of strength and not being limited by chub in the way. I don’t love having to shove a roll of fat out of the way to get into a certain position. I don’t love that it is hard to bend over and tie my damn shoes. But this is way better than the 60-ish pounds I was above that weight for a while.

I have been putting painting progress pictures up on Facebook because that interface is easier for dumping photos. I kind of hope I will get around to putting together pictures on a webpage here sometime soon. It’ll just take a lot more focus and time than I have right now. Erf.

Good thing to notice

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I’ve been going to yoga classes for a little bit now–a couple of months? Something that I notice when I’m there is that I talk to/about my body differently than I used to. I’m not sure when it changed because I don’t write this kind of thing much anymore. It’s noticeable to me because of what the instructors say. They tell you to check in with your body then pause and then tell you to get past the negative vocies.

These days when I check in with my body it’s gratitude. Thank you for being so strong. Thank you for carrying me so far. I am so proud of what you can do. Yeah, you hurt but isn’t it nice that you hurt so much less than you used to? I’m proud of us for learning how to take care of you better. I can feel the expression of love over time in my bones. I’ve worked so hard to get to where I am. I’m happy that I’ve had this kind of support and time.

I suspect that the combination of meds that I’m on at this point is helping. Amitriptyline is both for pain and it increases serotonin so it’s an antidepressant at the same time. The lisdexamfetamine feels like what I wish i could have had since I was a teenager. I genuinely believe I would have made fewer risky/bad choices if I had been on it.

I really wish I could have been properly assessed for ADHD and ASD as a teenager. It would have changed my life. I wonder if I would have accomplished as much? I wonder if I would have accomplished less? Ah well. It is what it is and all I can do is move forward.

It’s a lot better painting on this med combo. I don’t feel the urge to paint all night long “just to get through it”. I know it will make me feel like trash later and that’s not very tempting/alluring. I’ve been painting for a few weeks in a row now. My one short night of sleep (I got over 6 hours… so not a California short night) was when I was trying to clean up after painting. It took 15 hours to put things back in place and clean up the house enough for the cleaners to be able to come in and do actual cleaning instead of just walking around piles. My average for the last four weeks of sleep is about 8 and a half hours. That’s… kind of shocking for me being in a heavy work cycle. That’s just about healthy. Whoa. Balance.

I am finding a bit of appetite suppression from the amfetamine. I am eating smaller portions at meals (2 tacos instead of 3, 2 pancakes instead of 4, 1 bowl of soup instead of 2) and I feel less desire to have a late night dessert. Sometimes I skip lunch because I’m not that hungry but I eat a lot more dinner to make up for it and I think I eat about the same amount of food. I am drinking waaaay less alcohol (I’m probably taking 3-6 units a week down from 10-15) mostly because the amfetamine means you feel the alcohol less so I don’t feel as much desire to consume it. It still tastes good so I have some. And some of the wine I like is multiple units/serving in the glass I use so there you go. I’m flirting around 200. I haven’t seen lower than 203 since I arrived in Scotland and I’ve usually been in the 210’s and 220’s over the past 2 years so I am losing some weight. With the amount I exercise it has felt kind of weird that I keep as much extra padding as I have been. When I was in my 20’s and 30’s this much exercise would have kept me down in the 160’s.

Something that I think I am feeling in my body is I have dramatically fewer spikes of cortisol with this med combo. I really don’t feel anxious. Over the past two years I have noticed that in Scotland I feel dramatically less anxiety than I did in California as a baseline… even with the help that cannabis provided. I don’t have as much hypervigilance here. Prior to trying this med combo I was still feeling anxiety though in that way that I think is about my body being programmed to worry about everything as the natural state of being. That feels like it is stopping now. In California I had to be careful with my cannabis usage because I couldn’t/wouldn’t take it when I had to drive so I had a lot of up and down effect in terms of my experience in my body. I think there was enough break in cortisol production that my body could process food normally and not turn it all into emergency fat rations for later tragedy.

Since moving and being off cannabis entirely (the weight gain started right when I left California–I could tell in how my clothes fit) there has been a slow but gradual ballooning effect. Exercise and eating a balanced diet wasn’t having any impact at all. Despite the comments of ignorant people… I eat a fairly ridiculously healthy diet compared to the average person in the western world. We eat very little that is processed. We cook from scratch for something like 12-15 meals a week. (A lot of the other meals are leftovers.) We eat 4-9 servings of fruit and veg a day. I have cut a lot of the dairy and meat from my diet. (My family eats more than I do but I’m trying to limit inflammation.) My weight creeping up is not about eating too much and moving too little. Yeah yeah it’s anecdata but I have lived in this body for 40 years now and I’ve seen it through a lot of cycles. Cortisol/stress/anxiety.

It’s really dramatic having medications that lower the level of cortisol in my body on a 24/7 basis. I am consistent with the meds. I haven’t skipped many doses since I started so this is a really level sort of experience.

But my blood pressure has creeped up. I’m hoping that losing some weight will have an effect on that so that I can keep the meds. I really like how my brain feels. I have also halved the amitriptyline dosage on the advice of my GP to see if I can keep the positive effects with a lower dosage. She is mildly skeptical because my former dosage was already the “grandma dose” (her words) and she wonders if my body will be able to feel anything with half that. I’m trying it for a few weeks to see. I think it is worth trying. I really don’t want to lose the lisdexamfetamine. I feel like this is doing so much.

It feels like such a blessing that when I quiet down and look inward what I see is liking myself.

Getting old is fun

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I had an appointment with my psychiatric nurse this morning. We agree that I don’t need to adjust the lisdexamfetamine because it is going very well. She is, however, quite worried about my continual high blood pressure. She is also a bit concerned about how much weight I have lost in the last month (around 15 lbs) but not *overly* concerned because I have reduced how much alcohol I am drinking, I am snacking less right at bed, and I did ride almost 300 miles last month. I am going to be monitor my weight and my blood pressure daily for a while. She wants me to send her a text message once a month letting her know how the trends are going.

I am also going to be speaking to my GP about lowering my dosage of amitriptyline or possibly switching meds entirely to see if something else can provide some relief without the blood pressure spike.

I finally feel like I am getting a handle around some pieces of how the NHS functions. That’s good. I’m feeling cheerful about life just at the moment. I’m back to painting. After lunch I am going to go do a few hours of working on the ceiling in the lounge. I never have finished the hall but I need to finish up the bits that require the extremely tall ladders because I need to give them back. I suspect I will be painting through a lot of the winter. Christmas decorations may come out a bit on the late side this year and get put away early because I don’t know how much painting I can do with them out.

Middle kid has been an absolute dear and is letting me store paint in their closet because they don’t use that shelf anyway and keeping the paint away from the extreme temperature cycling will help it last a bit longer. It also makes it easier for me to get it out and put it away reducing how much time I need for support work instead of painting.

Today feels like a very good day.