Tag Archives: health

Dear Universe,

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I haven’t had to come to you in a while, hat in hand to beg your favor. I need some kind of personal assistant/housekeeper/bossy person with great organization skills who can visit with me for a number of hours in a week. I don’t need them to do much other than be there to force me to work. If they want to help with pieces, cool, but it’s not the main point of the job. The point of the job is to keep me on task.

I am not struggling to get through the list of tasks for the kids. That’s the easy part. I can do that in my sleep. I can make sure food is on the table. I can get most of my shit done.

I am struggling with the load of paperwork that is now mine. I need to get paperwork dealt with on a lot of different levels. It freaks me out and I shut down and then I can’t do it. This is where Noah and I traded off who did what based on when our brains shut down. I feel like, literally, the place where I am failing is with executive functioning to do the adult bureaucratic stuff.

I never took the SATs. I never took any kind of exam for grad school. I simply showed up and they let me in for both undergraduate and graduate school. I have skipped a lot of steps in life. I ignored them like they were irrelevant and magically I did ok until I didn’t. I am still hella salty that I was too poor to get disability accommodations and that’s why I don’t have a graduate degree. Oh well.

Once again I act like qualifications are irrelevant and, by and large, they turn out to be. I am not sure how to deal with the stuff I can’t side step. It’s not that I need someone to do it for me. I need someone to be my audience so I’m not allowed to freak out.

I feel bad about this. I am more functional, for some things, if I am being watched. I won’t ask the kids for this. It’s awful. I come out to the studio intending to work on it and instead I find I have now finished Sandokan. It was vaguely cute? It was popcorn.

I have to get this stuff done. There are consequences if I don’t. This is where I am all “Oh, yeah. This is why I have been labeled with having a disability. This failure junction. Awesome.”

I miss Noah so hard. He would have had the citizenship paperwork in weeks ago. I am flailing. Also we are on our third fucking virus in a month. Everything feels so hard. I am so tired. My body is not enjoying this constant illness. When I mentioned it to an NHS doctor she said that we aren’t out of our house enough. We need more exposure to germs. Thing is, we are all a collection of weird long term health problems we have acquired from viruses. This is not going so well for us.

I wait until we are out of the range of contamination but I can’t wait for complete health before we return to activities. We’ve been coughing for about four weeks now, since the first one. Eventually we restart exercise and classes despite coughing the whole time. We aren’t contagious. We are simply not getting better. Then we catch a new virus and it goes through the house like a horrible domino video. Those things low key freak me out. I see them as indicating health problems and how they spread through communities. Ugh.

Ok universe, that’s all the time I have. I have some non-dairy mochi waffles to try out.

I’m told that the obsessive self reflection at the end of the year is very American.

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Not to toot my own horn or anything, but my hindsight is amazing.

One of the many things hindsight has taught me is that I have used therapy as support for my autistic inability to understand the social rules people expect me to be following. I’m not working on my 36th year of therapy. I was diagnosed with autism in year 32. I had a 5 year break 3 years after diagnosis because I moved countries and therapy didn’t feel super essential. I was doing ok. Then Noah died. I’m not doing as ok. I need the support. I don’t think this is exactly what therapy is supposed to be for but just like I can occasionally hammer something in with the end of a screwdriver, therapy can be what you need it to be.

This is a weird year to look back on. My goals for myself were really limited: don’t burn down the house, keep the kids alive, don’t fuck up friendships, have enough sex that life feels worth living, and do whatever I can to make sure my kids feel like they still have a fun future. I’ve done pretty well! The house is still standing and I still have all the children I started the year with. Check.

It’s an odd set of thoughts because in this next year the first child is fully a legal adult and the second enters into quasi-adulthood. I won’t have the same number of children. Scotland is kind of weird on this topic.

I fucked up a few friendships and I feel deep regret about that. One of them I feel like most of the fuck up was because two mentally ill people can’t always be support for one another; I’m sad she felt the need to leave my house and punish me by making ostentatiously false claims about me to child protection services. That sucked a lot. I am relieved that social services very rapidly identified that it was a malicious, false call. The assertion that I can’t feed my children is pretty dramatic and extreme given that food is our big thing all day every day. One friendship is not over (not by any stretch) but I needed a lot of time to sit with it. I needed to think really hard about how the relationship can look going forward. Have the relationship you can have, not the one you wish you could have. I have no shortage of love for my friend. We will figure it out. I am glad I hit pause and did not try to force myself to handle things faster. I would have fucked up. I don’t want to end this relationship even though I felt pain within it. This whole year was painful. I don’t want to act like any of my friends deserve to feel like the extent of that pain was their fault. It’s not. I was drowning and couldn’t do better.

I will be able to do better in the future. I am in less pain.

Sex has been really good this year. I had fun with the hiring and firing of lovers early on. Hunting makes me feel alive in ways very little can. Gentleman has ended up in a much bigger container than I expected. He is a much better person than I expected. My expectations were a tripping hazard in hell and then he turned out to be great. It’s been lovely discovering in layers all the ways in which he is a delight to be around. I want more time with him. It has been particularly rewarding for me to see the ways in which he embodies healthy/positive masculinity far from the encroachment of feminist speech I encountered in the US. He has healthy male friendships and they support each other emotionally. He is incredibly respectful and he reacts to boundaries like they are electric fences. They never have to be defended again. He does all this without using any feminist language around it. He’s not doing any of it because he wants to jump over hoops and prove he is a “Good Man”™️. I don’t feel manipulated; I feel like he is living his life regardless of me and I get to see small pieces of it. I feel like I hit another lottery. He makes me feel so much joy.

This year will be more balanced with time between the kids. Shortie got big things this year to help her feel like there is a fun future. Next year I’m not taking her on a big trip alone. It’s going to be back to pod-adventures in the time I have before Eldest Child is big enough to declare that he can get out of them by dint of being a full legal adult.

I am dreading the return to a more rigid schedule. We restart in 7 days. This whole year has been a dream state. Our hours have been whacked. We have drifted off in various directions and we’ve lost a lot of the structure I normally enforce. I literally couldn’t do it all. Not with how much brain fog and executive dysfunction has been ruling my life. I’m doing a lot better than I was and the estate stuff is mostly done. I’m going to have to pay a fine for it being late, but hey ho. It will be done correctly and I won’t get in trouble down the line. Getting this many stupid fucking businesses to cough up information was really hard. I have mixed feelings about my habit of keeping my eggs in a dozen different baskets. In one way: yay for monetary protection. In another way: oh my poor kids. Going through this as an executor was a nightmare. It would be easier for them if I consolidated and only had maybe three baskets. That scares me for a lot of reasons. It may be the better choice anyway. I don’t have to decide today. I have meetings coming up with people I pay exorbitant fees to and they will help me figure out my plan. Then they will execute the plan while I go back to my day job because this is their shit to do, not mine.

My life is fucking wild, yo.

I tend to go back and forth between thinking about the year aligning with the US tax year (Jan-Dec) or a school year (autumn-summer). I’m thinking about these differences because I have different goals for them. My 2026 plans straddle two school years. That’s really high in my consciousness for me this year in particular because I’m heading into my last term as my son’s teacher. That’s a super wild feeling. I set out to learn what I needed to learn to enable me to homeschool my future children when I was 17. No, I’m not a tradwife. I am an autistic weirdo who never fit into the school system. I was a good classroom teacher in that phase of my life. I feel I have been an intermittently good homeschooling parent.

There are times I’m not proud of. Times when my anxiety about failing my kids got the better of me and I went well into Tiger Mom territory. I think I stepped over the line into abusive too many times. This is a hard thing to evaluate and cope with while it is happening because of course I knew people who were doing far more extreme things. It’s hard to see where you are on the scale while it is happening. Looking back, every single time I was shaking and ranting was over the line. I didn’t know how to feel secure in those moments. I had no ability to trust the long term would work out. I was operating on faith and my faith was a shaky thing.

I have not punished my younger two kids the way I did EC and I believe that is to the good. He and I have talked about it a lot over the years. In a way I feel like part of what Noah got from being his father was seeing a child live with a mother who was working on PTSD triggers so that they would no longer be present in daily life. Noah never forgave his mother for how her untreated PTSD that made his childhood very hard. My son gets to point out how his childhood had some hard points but he spoke up for himself and demanded that things get better and they did. I did not come into parenthood a fully healed human being.

This is why having a mentally ill parent is an ACE point. My kids have had to live with me as I have struggled to get to better places over and over again. As they change and age up I have to grow through a different level of being fucked up. Part of the reason I am rereading the shitty romance novels from my childhood right now is because my life arc now overlaps and intersects with things from my mother’s story. I’m no longer living out Noah’s mother’s story. It’s really weird to wrap my brain around. Noah married someone who was frighteningly like his mother. Now I get to turn into my mother instead. This sucks because Noah’s mom’s life has gotten a lot better and she’s in a better place. I have no idea where my mother is or how her life is going. I’m not open to finding out. That scares me when I start to think of my kids. Will I maintain the good relationships with the first two because they imprinted on our happy family? Will I lose the relationship with my daughter because it will go how it did with my mother and I? That scares me a lot.

I can’t make the same mistakes with my baby that I made with my oldest because the safety net isn’t present. Having Noah in the house to be an alternative source of affection meant that our kids felt and knew they were overwhelmingly loved every minute of every day even when a parent was upset with them. I no longer have that on offer and it breaks my heart.

I don’t feel like I am going to be able to push a full schedule yet. It takes a lot of push in my house of AuDHD barely contained chaos. We get a lot done. We also don’t lead lives that align all that well with “normal” lives. That feels a lot harder to defend when I don’t have Noah in the house as the wage earner proving that keeping an abnormal schedule is no big deal. People can do that for their whole lives and still be part of society. Now I have to do it with my own chutzpah and I feel decidedly lacking.

I feel really scared and I hate that. I don’t want to feel really scared right now. I want to feel calm and like I know how to do my job. I started preparing for this job 27 years ago. Surely I deserve to feel confident now. In less than a year I have my first homeschool graduate. In a way it is unfair though, he is the literal poster child for why unschooling is a fabulous concept that can be magically successful for self-motivated people. He had to go to school to learn that people believed his dyslexia +ADHD+autism means that he was supposed to be stupid. He was never told that at home. It was never part of the conversation. He had to learn tricks and ways to work around his issues, but his brilliance was absolutely never in question. It took two years after I dragged him back out of school to unlearn the awful beliefs he picked up in two years at school. Fuck school.

I definitely believe all the way to my bones that I am the best educational opportunity on offer for my children. This has been my great passionate vocation for my life and every single person who is qualified to judge me has been impressed by my knowledge and impact. I should be able to get over my anxiety about failing my children. There is literally no chance I can do a worse job with them than sticking them in school would do and that’s the standard offer. I’m fine. Really.

The anxiety is still very hard. The anxiety is what stands between me giving a mediocre performance and me being my absolute best Mary Poppins self. Sometimes people tell me not to worry and not to track how many hours we spend on various aspects of life like social life vs academics vs house chores.

My dude, you don’t understand that the tracking is how I allow myself to worry less. I never get to “don’t worry”. I don’t think that is on offer for my brain in this lifetime. It’s ok. The tracking lets me put down like 80% of it so I can use the bandwidth for other things. It’s useful.

I think about life in terms of hours spent. I’m watching the clock right now and feeling the last bit of joy that I get to keep writing right now. Starting in 7 days my time will be up by now. We have completely fallen off of the habit of doing family morning walks. It’s bad for us. We need to restart this way to begin our days. It’s important for so many reasons. We live 1/4 of the way up a really big hill. Going to the top of it every morning is the absolute most important thing we can do to ensure that we will be together for many, many years. Our hearts need it. Our circadian rhythm needs it. Our intestines need it. Our spirits need it. It’s time to get back to it. I love all of us enough to insist that we need to do this. Sure, exercise killed your father. Whatever. We still have to exercise.

This is a hard thing to carry. I feel like my bullying is a lot of why he died and I’m really struggling with that. I absolutely am a bully when it comes to exercise. There are reasons my kids can usually sprint up hills. I chase them up the hill over and over and over again. The faster you go the less I can talk and that means I’ll do less bugging you to go faster. It’s a really great self reinforcing cycle. The person who runs the fastest spends the least time listening to me push. They all get mad when I get high into marathon training and I can keep talking while they are panting and wanting to die.

I don’t know that I will ever do another marathon. At the start of the year I felt like I couldn’t possibly. Now I feel like it would take years because the amount of training time away from my daughter is hard to cover. Maybe I could make her cycle it with me. That’s a thought. I’m definitely mean enough to insist on her learning to cycle that far. We are bike people. It is our form of transport. If you can’t go out and do a lot of it you can’t go out and have a day and have enough energy for all the things. We have to treat cycling training like a mandatory part of life.

I have degenerative physical issues. I hold them back with a wall of exercise and good diet. Will I ever get better? No. Will I ever stop hurting? No. Will I maintain independence as long as possible? You bet your fucking buttons I will. I build muscular strength to make up for the weakness of my joints. It is the only productive solution I know of. I often have to wear braces or supports. I’m never fast. I’m never “fit” meaning skinny and well toned. But I am able to drag my meat sack through days of getting shit done. That is what I care about.

I have said repeatedly that I expect it to take 18 months for me to get back to something more like my normal speed. That means I am assuming the whole first half of 2026 is not going to be a banger year. It is my last term as my son’s teacher. I don’t want to go out with a whimper but I also can’t push hard enough that my anxiety spikes and I act like a bitch. It’s a hard balancing act on my own. I will have to bring enough joy into my life that I can stay stable. That’s hard. I have never been the best at stability. I have always lurched from highs to lows.

I find myself using a lot of the specific somatic techniques to regulate my nervous system. I am catching my anxiety spikes and solving them on my own. This can be very awkward for people in public so I try not to do it when out of the house. You can see the inherent problem there, right? Going out is when I feel the most anxiety while also feeling the least ability to self soothe. People really look at the weirdo rocking and tapping on themself while humming a really high tone for a long time.

I fucking love that I go to therapy to learn ways to be autistic more purposefully. Worth every £90 session. They help me strategise how and when to exit upcoming social situations so I can calm down. Do I need to fully leave? Can I just step out for a few minutes? It’s an adventure. I’m definitely the one crying.

It’s easy and natural to do around my kids though.

It’s making me think long and hard about what I perceive as “the social contract” and NT behaviours that I am required to mimic in public. I believe the social contract is largely not something that can be negotiated because it is about interacting with strangers and they can never be expected to give one grace. Will some of them ultimately be friends who will give lots of grace? Absolutely. You don’t test that right off the bat. You follow the social contract.

I was very delighted to spend Christmas day with a family of other ND people who struggle with masking enough to look normal. I felt so very comfortable. When someone else had a tic I could feel my body relax. I’m allowed to be here. My soul needs this feeling. I need other weirdos. It’s really important for me on a physiological level. I need the co-regulation. We all exist and we all should exist and it is ok that we have the needs we have.

How do I carry this forward being the only parent? Noah cast a big shadow and a lot of the reason we all felt so comfortable being weird together was because he was very weird and could make being intensely off-putting somehow charming. He was a marvel to behold. I do not have his ability to make things charming. I’m a lot more of a 2×4 to the head. The pressure of trying to be all the things has been giving me literal migraines. My body is overwhelmed and sad. More exercise is the answer, right? If it isn’t then I’m fucked because I don’t have a lot more on offer.

I am too tired to hunt. My relationship with Gentleman is going to be delightful and sweet and soft. I worry about the black hole I have of need for stimulation and connection. I am going to try spending more time with non-sexual friends. I’m not committing to monogamy. I’m just tired. I need joy. I need a lot of it. I need buckets of it.

I miss Noah. I have to keep moving anyway. It’s not time for me to stop. He promised I could die first. I’m really sad that I have to live with that broken promise. Oh well. Today I go get my new glasses. Hopefully that will help with the headaches. If not, time to see the GP.

The day must begin. There are foreheads to kiss. I need to tell them that I am so glad to see them again. Rituals are important. They bind you to who you are.

Backwards and forwards

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Yesterday was Noah’s birthday. He should have been 49. It will be really bad for me when I turn 49. That’s going to be savage. We spent the day cleaning the house and getting ready for my impending surgery. One day till my friend arrives to help. She wants a few days of settling in with the kids first. She is smart. Surgery is in four days. Due to the stress and vagaries of train travel I’m going the night before. I feel less resilient with Noah coming along. I think the surgery will be fine. It’s going to hurt like last time.

Unlike last time I won’t have to give a police interview 3 weeks into recovery so I’m less likely to have a sudden massive bleed out.

I’m having a hard time with my feelings. I realize that isn’t a huge shock or anything. I wish I could only remember good things about Noah. Instead my brain is going through all the memories–good and bad. Our marriage was extreme in a lot of ways I can’t nail down without feeling shame. We constructed a marriage that wouldn’t work for anyone else. Were we wrong to do so? Sometimes I can’t tell.

The part that matters to me is: I wouldn’t leave for anything. I would never have left. I would have dealt with being in pain or having to be smaller. He was worth it. He was worth everything. I loved him so much I feel I could explode. He was a very good husband for me.

I am behind on emails again. I haven’t caught up on neurotic tracking in a while. If I’m not sharing the data with Noah it feels so much less purposeful. I created data, in part so I could show Noah trends and patterns and he would decide when I had to go in and seek help for a problem. He was my designated grown up and care giver. Now I feel like I will drift in the wind because there is no one to care.

I feel so achingly lonely. I want him all the time. I miss his smile, his intense way of looking at me, how he touched me, and how made me believe I always had a place: beside him.

I feel like I will never belong anywhere again.

I am highly conscious, as I move forward as a human being who will never agree to monogamy again, that I will never feel like I belong to someone again. People will always keep a space between us for their own safety. I can’t blame them. I would too. I don’t think it safe or wise to get too close to me.

The person I am seeing keeps asking why I hard selling the benefits of being around me. Do I expect him to do the same? I don’t. I really don’t. It was one of the dominant behaviour patterns of my marriage. Noah and I both did it constantly. “See, I do x for you. It is better to have me around than to kick me out.” As if that is a healthy way to run a marriage. I am having a hard time stopping. I still feel like I am trying to beg people to not throw me away. I think part of me agrees that if I am not monogamous nothing else I do will make up for that. I am a poisoned pill.

It’s been sitting heavily in my craw that between 3 men, I have not had control over my sex life or my sexual development for about 33 years. The middle one had the least time with me, but he did a lot of the early hypnosis work that Noah built on for almost 20 years. It’s not that I lost control of my body at 10. It’s that I gained it briefly at 13. I gave it away at 19/20 (that was a muddy line). It was given back when I was 23. I regained *nothing* at 33. I did have a rebellion at 34. Now I’m getting it back permanently at 43. I pay a lot of attention to patterns. Numbers give me comfort.

As I contemplate what I need from dating, as my son likes to say, the bar is a tripping hazard in hell.

Going forward I am going to need to spend time around people who make me feel cared about. I’m going to need to spend time with people who act like I am a fascinating puzzle. I am going to need to be around people who are cautious with physical boundaries and who recoil like an electric fence when they are told no. I cannot be around people who body shame because I cannot ever be vulnerable with them. That is a sign that I am going to be attacked and I will feel deep shame. I don’t need more shame factories in my life. I really don’t.

What I need (and the reason it is worth my while to seek out) is to feel seen and appreciated.

Most people don’t make me feel like this. Very few people make me feel like this. I go through most of my life feeling intensely alienated because I can’t ask most of the people I spend the most time with to see very much about me. It creates an overwhelming deficit.

Noah used to fill that. I don’t know what to do now.

I fee sad and isolated a lot of the time. More than I deserve to, in my opinion. It will change when and if it changes. I want so much. I feel entitled to so little. Noah gave me so much. My whole life is going to be less full obsessive love after this. I will never be someone’s autistic special interest like that again. I don’t even know that I would like it again. It came with a lot of constraints. They were worth it. I miss him.

The kids are clearly well on their way to deifying him. I just nod. I don’t talk about his down sides. It’s too soon. Someday when they are bemoaning how they will never be as good as their super human father I will cackle and tell them about all the stuff they didn’t see. He was a man. He had his good parts and his bad parts. He was deeply and achingly human. He was frail in a good many ways. He was aggressive in ways he shouldn’t have been. At times he was violent. Yes, he did lose his shit. Only with me. I was his safe person, as he was mine. For people like us, part of feeling safe is being able to be all the parts we can’t use with other people. Some of those weren’t very nice.

I have intensely positive feelings about my marriage.

As I move into the next stage of my life, where I don’t have Noah to meet my needs, I have to consider other ways to meet them. It feels cold as fuck but also what else am I supposed to do? I’m not my mom to simply never date again. She had a threshold of abuse and was done forever.

I have data. I understand how low the rate of violence has been for me in terms of broader exploration. I see the fireworks of good. I can’t act like one very small part of the data set defines the whole. That’s silly. That is numerically unsupportable.

Thanks to having data I can see the positive changes in my trajectory. The kinds of people I could find at different stages of my life are very different.

I am grateful I am about to have help with the kids for a while. I need it. There are tasks I’m falling behind on because I can’t brain after this many hours on duty. I feel like my job shouldn’t be exhausting after all these years–I should be inured. I’m not. I still like my day job but I need to simplify aspects of it. I can’t be as much of a three ring circus without Noah present for support.

I am so much less capable without him papering over the cracks and finishing the last 20% of so many things. And on top of that I’m doing all the stuff he usually did entirely off-screen from me. This is hard. My brain is very overwhelmed all the time. I need to find a way to get Shortie more of a social life without me having to physically facilitate it. She needs it really badly. I’m having a hard time. The surgery recovery time is looking so brutal. Oh well.

Keep moving. Only for the first wee while it’ll be shooting for 1,000 steps a day level of “moving”. The point isn’t to keep a consistent speed the whole time. We are humans, not machines. The point is to be patient and loving and kind to myself on the far side as I struggle to regain fitness. It will be another journey. I will have to go slowly or I will hurt myself.

This process is going to be harder without Noah to fuss over me and force me to rest. He was literally looking at retiring early to be my full time carer. I’m scared. I get sick a lot. I have a compromised immune system. I don’t have a specific name for it. I just get everything and I’m down for long periods. My life doesn’t stop though. I stay sick longer because I don’t rest enough. If I don’t do too much, not enough gets done.

And now Noah won’t be here to help so there is even more work that I am responsible for. Fuck. Not all of it. His family is stepping forward to build more intense relationships to start the process of transferring intergenerational wealth. Noah turned it down throughout his life. The offer was always on the table. I’m going to say yes. I would be a fool not to. I’m going to need to pay attention to this education they are offering. I am now responsible for managing all of my money. I don’t get to wave at it and call it “Noah’s money”. I have made reasonably good choices so far. I like where I’ve gotten.

A very terrible part of me can’t help but notice that the severance payment for my first marriage is alright. Sure, the relationship was terminated but I am going to be safe forever if I manage it carefully. I can’t be profligate but I can still buy whatever groceries we want. I will never live like a tech bro again. Somehow this is karmically a place I can live with.

I have incredibly mixed feelings about the wealth transfer. I also know that I have two kids with noticeable physical disabilities and one kid where it’s too young to know. It’s connected to genetic issues in both kids. The NHS is finally starting to evaluate/track them.

I may have brought people into the world who are not well suited to the capitalist hellscape. Remains to be seen, of course. I’m not offering them a fully independent amount of help. They could have enough to live at home comfortably. I can’t promise a lot more than that. I don’t have more.

Noah doesn’t have 6 more years on his arc towards saving for retirement. There was a fair bit of input expected to get to what he wanted to hit. Oh well. Deep breath. I can turn a dime into a dollar. I will be ok. I am very good at denying Current Me things so that Future Me can have more options. I’ve been playing that game for a very long time. I can take a lot of denial in some ways and not so much in others. I will build in giving lots to other people, don’t worry. I’m still me. I am thinking really hard on the structure of that giving. I am going to have to have that firm in my head. I need guard rails and limits. I need to understand what I have to give. That’s a hard thing to figure out sometimes.

I have been told recently that I like “folky” country music. I like stories, not hard rock anthems. Guilty as charged. It’s funny. I never thought of myself as such because I had never had the slider start in that position before. Usually I’m considered not very folky. I know a handful of artists and otherwise I can’t it through it. I’m too pop.

I have been listening to a lot of old albums lately. I don’t want to watch shows. I am reading more. I like having music on. I know I should embrace silence more. I do know. I like the way I get to ride my emotions like crashing waves when I have music on while I type. It is my companion through all the highs and lows and flashes of memory.

I love the way I get to re-sort my past memories that come up. I see each circumstance differently. Noah and I ran out of arc. It is really hard to feel like I am having to go in and put a manual end on each piece of the thread. “This is over now.” I am pruning off parts of myself that grew there because I had to accommodate Noah. I have absolutely no idea what this is going to mean in the long run.

It scares me a lot.

I am going to have to be mercenary with myself about my limits going forward. I need to catch up on budget work. I need to stop allowing myself this sloppiness. I’ve been scared to look. I can’t do that anymore. I’ve been watching the overall balance and keeping an eye on that. I need to look at how things are shaking out.

Then I need to hand a number to my in laws and that’s awkward. They don’t want me to stop having all fun. They want the kids to have big lives, still.

I have the option to choose a soft life.

Globally speaking this is righteously unfair. I’m aware. I’m having feelings about that. I also don’t see any global value in grinding myself to dust. Who knows what good I will do if I have the ability to learn how to thrive instead of barely surviving in “solidarity”.

I have always done my best to pay forward the help I have received. I either have credibility or not. I am not assuring private jet lifestyles. I am making sure we won’t lose the house and we never have to worry about food.

Our life together has been a mash between what he wanted and what I wanted. Now what? What about the parts that were only there because he wanted them? I’m having a lot of feelings about that. I’m having a lot of feelings about everything right now.

This is the path. I get to traverse it, not question it. All the feelings. I’ll have all the feelings.

Every day is good and bad

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I’m trying really hard not to only focus on the bad parts. I burst into tears every day, keening his name. Sometimes I can’t help but scream his name over and over. How can he be gone?

I feel like I will never be seen completely again. I will always be a tiny fraction of myself going forward. Our relationship was so much. We were wonderful together and also terrible together. We were so good for each other and also abusive at times. We were intense, broken people together and we were trying to mend one another’s cracks. I feel so sad for the ways I could not make him feel secure. At least, by the end, he believed that neither of us would ever leave. At least we got there. That is something approaching secure attachment, right?

I knew he would get mad at me sometimes and act like a petulant, resentful child. But he wouldn’t go. We finally got there. It took more than 17 years to feel that kind of safe. I got less than a year of feeling that certain, that sure, that committed.There is no fair in this life.

I’m freaked out on so many levels. My poor kids are going to have to do without a dad for the rest of their lives. They have had a father for less time than I did. Not that my dad was good. Noah was a very good father. I feel absolutely devastated for my baby. She is not going to have him around for most of her childhood and that feels so unfair. There is no fair in this life. This is too much though. He saved his petulance and his resentment for me. He gave the kids all the good parts. His good parts were so good. He was such a good daddy.

He was so good that I couldn’t keep him.

My older kids have been talking about how I am going back to being the protagonist of some horrible anime series. Horrifying things rain down on me, tragedy after tragedy and I just stumble through it all. They told me they thought that raising them was going to be my epilogue, but instead they are an intermission between the awful. I’m not happy about this.

I’m really scared of my future. How much more awful stuff am I going to have to endure? I don’t feel very strong. I have a cold. My throat hurts. I’m dizzy. I’m exhausted and I feel terrible. I miss Noah. I have decades ahead of me of crawling to the kitchen to make my own fucking soup.

It was funny, someone offered to bring me soup, medicine, or other groceries. I said, “I already made soup and it is on the stove. I got medicine the first day one of my kids was sick so I’m covered. A grocery order is being delivered in 4 hours.”

It took so many years before I would allow Noah to help me. I don’t like accepting support from anyone. I don’t like being vulnerable in front of someone. I don’t have a lot of good memories around being cared for when I am ill. I had Noah and that’s it. Otherwise I hide like a cat and only come out again when I am able to defend myself.

I don’t come out until I am able to put a socially mandated happy face on. Masking is necessary for survival. People can’t be trusted when I am weak. That is when they hurt me the most.

I am so scared.

I’m not going to have Noah between me and the world anymore. I won’t be able to hide behind him when I am weak and vulnerable. People despise weakness. They want to hurt and crush anything that looks weak or sad or pathetic. It is a really standard part of human nature. It’s not the world being mean to me. It is simply how the world works.

It’s not personal.

I am grateful for the people in this life who help me feel seen. When Noah died a friend reached out and was able to recommend a therapist for helping me get through this transition. My friend said, “I know the exact right person for you.” My therapist is a plural rodent. They are heavy on the woo while also backstopping their intense multi-modality training on psychological therapy techniques with body work training. They really are a great therapist. We spent a lot of the last session working on the ways I’m having intense body reactions to dating.

I’m having a lot of anxiety around the topic for a bunch of reasons. Two of the people I’ve met in the last month are hitting old hot buttons. I’ve been trying very hard to give them chances to prove that they aren’t just like experiences I had in the past. I think I am pushing myself to be forgiving long past the point where it is healthy for me.

I am scared of putting an inappropriate amount of emotional weight on the one person I will be left seeing. One reason I like dating several people at once is because I spread out my too muchness between them and I don’t overwhelm anyone. I like this person. I’m scared of scaring him off when I’m doing the intense emotional up and down that comes with surgery recovery. I’m going to be intensely weak and vulnerable. I am going to be scared as shit the whole time. I can’t do my favourite bonding/soothing technique: sex.

When I’m recovering from surgery I shouldn’t get my blood pressure up. That means I don’t want any sexual contact. Well, I want it but it could literally be life threatening so I don’t do it.

How am I going to trust that someone wants to hang out and talk to me without me being able to barter for their time? I’m not going to be entertaining or useful at all. That makes me feel very scared and insecure.

What are the good parts of the days lately? Time with my kids. We are all being incredibly cuddly and loving and supportive. We are making a lot of progress on weeding this spring. Some years we let it get fully away from us. I think that I will be at a stable maintenance place while I’m crawling around post-surgery. This is good.

I have barely touched the garden in the entire last calendar year. My plan was to fall into it heavily after Pride but the second half of the year went completely sideways instead.

Like the first half of this year being a bit of a blur. There have been good moments but mostly I am going to remember this time as a haze of pain. I am so sad. My happily ever after is over. I don’t know how I will ever believe that anyone loves me again.

I’m pretty stupid. I am going to forget the way my friends are showing up. I am going to lose time and fall into always/never and forget that any good feelings have ever inhabited my body. Which is crazy. I have Miss Jenny and I’ve had her for 31 years. I followed her across the sea. I have the people who have showed up this year. I “know” it. I hate how hard it is to be in a room with most of them. I’m super avoidant. They are coming so far and demonstrating their love with such purity and openness and I’m still hiding to cry alone.

I used to hide away from Noah, too. I rarely let him see me cry.

I hate being sick. It makes me feel extra mopey.

Noah gave me a sense of belonging that I’ve never had with anyone else. I hate that I don’t have it with the kids but I don’t. With Noah here to watch me I knew I would be a good enough mother so I was allowed to stay. He made sure I wouldn’t be too bad. I trusted him to slam a barrier in front of me if I started to do something I shouldn’t. He wasn’t the only childish one in our marriage. Without him I am scared that I am going to be the problem; I am going to fuck up my kids so maybe it is better if I am not here. I’m not going to leave–neither through suicide nor desertion. Don’t worry about that bit. But I don’t feel like I belong. I feel like I am barely allowed to be here. Now that this isn’t Noah’s house it is harder to feel like I deserve to live here. I was allowed to be here because Noah wanted me.

For the last 18 years I have avoided suicide because Noah needed me. He needed me to love him. He needed me to accept him and support him and take care of him. He needed to be able to love me. He needed to be allowed to accept and support and take care of me. We validated each other existing. I don’t know what I am going to do without that structure. Without Noah wanting me don’t I take up too many resources to continue? I need too much medical care. I need too much support and I am out of strength to pay it all back. I can’t put decades of work in before I need help. I need help now.

I am having to ask for help and it fucking hurts. I’m not doing a great job of organising it because I feel like I am choking on it. I don’t deserve it.

I feel like I only deserved the support I got over the last 18 years because I made Noah feel so much better about being alive. I made him happy. I also made him miserable and sad. I made him angry. I made him feel safe and loved. He wanted all of the feelings and he wanted them with me. It made sense that I was way too extra because he needed all of that intensity. He needed all of me.

I am scared that the rest of my life is going to be tiny slivers and I will never feel fully alive again.

I hate that I’ve been feeling stymied and blocked about writing the story of my relationship with Noah. It’s been feeling too in medias res to consider. Now that is not a problem. It is over now. I still don’t have perspective because I can’t see me post-Noah very well. But it’s closer.

Noah, Vicki, the story of hunting before Noah, the Part 2 where I’m honest about my relationships with women the way I was too afraid to be when I got started on it years ago. So many book and stories in my brain. Will I write them or will I only whine to myself about what I “could” do?

I’m not big on talking about what I “will do”. I am big on talking about what I am doing and what I have done. Don’t inflate the future.

Noah is my past. He will always be there in my memory. He will always have given me the happiest home I have ever had. He will always be the person who gave me a family. He will always be the person who thought I was worth committing to. He gave me what he could. He gave me everything he could. He loved me so much.

I don’t think I will ever be loved like that again. He burned so intensely.

I am so upset that in the last months of his life he talked about how I was going to turn into Skye O’Malley. I wish he had not done so much foreshadowing his own death. The kids and I keep talking about it. There were so many stupid things in the last six months. He acted like he was on the way out. He acted like he knew.

I would have acted very differently if I had known. Would I have made better choices? I don’t know.

I feel like I don’t know anything. I don’t know about the past, the present, or the future. I am scared. I feel empty of hope.

This is why I go have sex. It keeps the worst of my depression at bay. The positive hormones give me a lift that lets me pretend I am full optimism, hope, and joy. Without it I feel dismal, pointless, listless, and like I should go become one with the mushrooms in the forest.

So of course I decide to cut off two sources of sex because they don’t make me feel good enough. I am too much damn trouble. I just can’t be pleased. I can’t be forgiving enough. I can’t accept whatever I get. I have to have standards. I have to act like I am living in a highly traumatised body and I need to feel safe.

Isn’t that an impossible bar? Isn’t that just saying I will never be in a room with anyone ever again?

In some ways, yes. I’m scared of what will happen over the months I can’t have sex. I think about the consequences of having to believe that someone wants my company in order to ask for time. Will I be able to do that? Will he want to? I don’t know. I don’t know anything right now. I’m so scared.

I’m going to keep moving anyway. I don’t stop. That is the reason I am a protagonist. I keep moving when I don’t want to, even when it hurts and I want to stumble and fall before the boulder chasing me. I’d like to be squished. It sounds restless. I don’t get to though, I’m the fucking protagonist. I need to do some fancy parkour jumping bullshit even when I feel too weak to stand.

It doesn’t matter how I feel. It matters what I do. Not what I “will do”. Not what I dream of doing. What I do.

There is no margin of error, there is no forgiveness, there is no one left to save me from my mistakes. I’m on my own because The Family is not going to be the whole centre of my life anymore. That’s what poly means. That is what Noah was so scared of. That my entire existence would not centre around him anymore. I would instead have one foot in the family and one foot poised to run off on adventure. He was right to be afraid. I should not be as enmeshed with the kids as he and I were with each other. It would be wrong. Bonding outside the house is going to be hard for everyone.

When the kids find people to date there is always a “bring them over” energy fairly quickly and there won’t be fore me. My people will have to go through a dramatic, massive vetting process. The people I created with Noah are not the easiest folks ever created. They don’t blend in very well. Their home will always be a safe place for them.

What I am less certain of is whether I will always be in their home. I can’t imagine moving someone into this house. I can imagine moving somewhere else. That’s a weird thought but it gives me a touch of comfort. Even if I commit to this house staying in the family because it brings comfort to the kids to have this home base I don’t have to stay here.

That makes it a lot easier to think of the indenture as the time when I am setting this space up for them. It’s a lot of why I am trying to set up the garden to be as ignorable as possible compared to how much food will grow on its own because it has a self reinforcing ecosystem around it. If I think about it as having 10 years left on the run for that situation it makes it a lot easier to set my pace. That’s a substantial amount of work, but a tractable problem.

As opposed to the problem where Noah promised me that I would never have to be alone again. The problem is I tried to believe him. He had just about convinced me. And now I am looking at a future alone again.

I am going to have to buy myself flowers and hold my own hand. Not because I want to. Not because I chose this. Not because I wanted this. I wanted Noah. I put a lot of effort into training him as a partner. He knew how to make me feel loved. He knew how to make me feel safe. He knew how to make me feel respected and seen. He knew how to make me feel like there was value and purpose in my life.

I knew how to make Noah feel valued and purposeful and valuable. I knew how to make Noah glow with feeling loved. I also knew how to cut him to his core so that he sobbed on the floor. I saw all of him: good and terrible. I responded as I saw fit. I was not always kind.

I was always who he wanted.

I don’t know that I will ever be able to believe that again. I don’t think I will ever believe that anyone will ever know me well enough to convince me that they will accept all of me. I’m going to spend the rest of my life being a lying liar who lies. I will mask so hard they will believe that what they see is all that I am. It will fill me with internal revulsion and aversive feelings.

The reason that leaving the house sounds so appealing is specifically that I can imagine really benefiting from 6 months or a year on a remote location where I don’t see or speak to a person the whole time. I would not bring the internet with me. No movies. Just notebooks, books, pens.

What would I discover about myself if I didn’t spend all day censoring around what other people don’t deserve to know about?

It is really physically painful dealing with all the thoughts and feelings I can’t express in front of the kids. Noah was my outlet, my relief valve, my safe witness. He made sure I stayed being the person I wanted to be. He understood who I wanted to be and he was absolutely relentless about kicking my ass towards that future. He was a fucking asshole about it.

Noah made me feel like a real person because he got to see all the good and the shitty and the petty and the grandiose and the mediocre and he loved all of it. He was in the room watching me have my life. He also got to hear all the backstage notes. He watched me grow up into the mother I wanted to be. The mother I started out just crossing my fingers and praying I could conjure up out of thin air despite no realistic role models at all. He watched me buckle down and be the wife I wanted to be despite it being hard for me. It was often a struggle to be what he wanted and I did the struggle. He was worth choosing.

He made me feel worth choosing. He made me feel worth choosing in sickness and in health, for better or worse. Knowing that there would be a lot more sickness than health and that my life has always been a lot more worse than better.

I feel like I need to be able to see a future where I will be able to get the problems of being me further away from my kids. I am so sorry for the ways my fucking never ending stream of tragedies is impacting them. I wish I had a better self to offer them but I don’t.

I keep interrupting this essay to writhe around on the floor sobbing and screaming. It’s a rough morning. I really miss feeling safe. I feel like I don’t know how to give it to the kids anymore because I don’t have it in me.

He was going to keep me safe, and healthy enough, and loved, and looked after and that meant I knew I had those things to give the kids. Now he is gone and I am an empty shell trying to pour sand because there is no more water.

At this point my screaming is a weird high pitched squeak because my voice is gone. Bodies are hilarious. I feel like my throat will fully seize and cease to work at all. I know that won’t happen though. I’ll go inside and wash my face and I’ll find enough function to breathe and communicate. I may whisper.

It doesn’t matter how I feel; it matters how I act. When I go inside I will hug my babies gently. I will smile because I always have a smile on a shelf for them. I have back up smiles for my smiles because I am not allowed to run out. I will say, “I am so glad to see you again.” They will always get that from me. I’m not consistent about everything but I am about this.

I can be so fucking furious I want to scratch your face off and I will still greet you in the morning.

I love those exchanges.

“I am so glad to see you again. I love you. Also, I am super fucking pissed off at you.”

Cue beatific smile and “I know!”

Their casual arrogance about being overwhelmingly loved is good for my soul. Past Me did that with Noah. We made them feel that certain, that sure, that secure. Two anxious messes did that. I’m really scared that I am not enough to carry it forward without him.

I am so scared.

30 days out

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Tomorrow makes it a month since I lost the person I loved the most in the world. I’m still crying on and off in bursts all day. I can feel a dramatic lessening of tension since the sexual assault trial was cancelled. It’s better for me not to go through it. It’s terrible for me that two governments have informed me that rape doesn’t count when it happens to me.

I wish Noah was here. I wish we were getting on with the fun of retirement and getting ever more intertwined.

Sometimes I write poetic things about how we were two trees too weak to stand alone so we leaned in and became one entwined entity.

Let me fucking tell you it is not god damn poetic feeling torn asunder because my love is gone. My soul hurts so much. I was not this hopeless when I was crouched naked, puking from the alcohol my dad gave me. I was not this hopeless when he held the gun to my head and asked me if I deserved to live and then told me to prove it with my mouth on his cock. I was not this hopeless when I decided that I could figure out how to get people to stop raping me–I’d take several boxes of sleeping pills all in a go and that would solve that. It didn’t. That just brought ever more fascinating levels of humiliation and debasement into my life.

Hopeless is not the water I swim in. I burn with hope intensely. But I had a magic man who made all my dreams come true. Then I lost him. I still want the satisfaction of seeing our science experiment through–will we create people who want to be in relationships with us as adults when they don’t have to? We’ve managed to miss the worst offenders that would make it likely. Now I get to find out how bad my fuck ups feel for the kids when their dad isn’t here to run interference.

Luckily we have practiced that anyway because he wasn’t around all day? I am deeply proud of my kids when they tell me I am speaking in a way that isn’t ok and it needs to change. Fuck yes. A long time ago I saw some sort of meme-thing that said something like, “Speak so well to your children that they will be indignant when someone doesn’t.”

That’s a mixed thing. Obviously as white people with financial stability we don’t need to be spoken to like we are better than anyone else. We fucking aren’t. Everyone should be treated with a base level of civility. When you observe someone giving less than that to someone else, speak up. I had a lot of conversations with Noah, and we did a fair bit of active role play, for him to learn how to make room for the voices of people who were not white men. He learned how to give all credit for ideas to the originators while amplifying their voices and expressing admiration for the excellent solution.

I was surprised when I heard my son rattle off to someone, “Of course I can tell you fifteen different reasons I think you are autistic. My whole family is and social interactions is one of our biggest special interests.” Like, I don’t know that I had really thought about it that way but it’s accurate.

I feel so overwhelmed by the magnitude of the struggle I have in front of me. I got a really great email from our old lawyer (who is now retired and unable to help) where she gave me a lot of advice about loving myself because I have nothing to give if I don’t feel cared for.

I don’t really have hope for any kind of future where I feel loved and cared for by a special person. I think I will get drips and drabs from many people and I will turn them into a glorious kaleidoscope of a quilt. Collectively it will be almost enough.

Noah will never hurry to bed smiling because he needs to metabolise for me so I don’t feel cold when I climb in after brushing my teeth. I will never grin like a fool and giggle with delight because I get to climb back in bed with Noah after my first wake up. The best man in the world picked me. I was so happy. I had so much hope spilling out of me for adventure and learning and growth.

In the widow group some folks were talking about how 9 or 12 months in they are still unable to do basic care stuff for themself and they are really struggling. I am feeling incredibly lucky that even though I don’t have hope I have a whole tanker vessel full of duty.

I am not judging these folks. They have not had giant really bad things happen very often in their lives. They don’t know how to adjust their self perception that quickly. They are struggling with how to evolve. They feel intense guilt about accepting that evolution will be necessary.

It’s been kind of lovely, actually, getting to the point where I see that and I feel a softness in my belly. I’m so glad you have overall had such a good life.

I lost the love of my life. That was just Tuesday. I was declared an unrapeable whore. That was just Tuesday.

It’s fucking amazing and hilarious that it’s true. Both things did happen on Tuesdays. I’m not going to bother looking back in my shit sandwich of a life to see how many of my shit anniversaries started on Tuesdays. I’m not feeling that masochistic.

Terrible things happening to me is simply par for the course of my life. I have had fairly brief periods where nothing bad happened. Even when nothing bad is happening my life is a hamster wheel of constant change in a way that would give most people vertigo. I don’t think people should be more like me. The training grounds are inhumane.

I am realising that I need to look at our calendars and think of them both separately and together because I don’t think the 4 of us can work perfectly in synch anymore. I think we need a lot more of people doing their own. I’ll still track with Shortie most of the time but I need to get some support so I can be an adult outside of parenting.

I am going to have to find ways to fill my own bucket. I don’t think I’ll get it close to full, but even 50% would be a big upgrade. I went climbing on Tuesday. I’m going to yoga today. Both things require cycling. I’m going to add social time with friends. Pam leaves in 7 days and that feels scary.

Luckily, she filled my freezer with dumplings because she wants me to have glorious vegetables to eat. Nom.

I need to get my head together enough to email the folks who are coming. I’m learning more about the shape of what I need. This is good. I feel sick but there’s no way out but through.

I’m afraid I am going to spend every morning for the rest of my life hiding and rocking and saying “I want Noah.” Well, I guess he has replaced longing for my mother. He gave me so much more comfort and love than she did and he knew me less time. I want Noah so much I feel like I will explode. I know it’s only been 30 days. Time will dull the knife edge of this pain.

I’m trying to pawn off my alcohol. I’m keeping some for cooking. Mostly though I am not permitted to do anything to drown my sorrows. I have to focus on health, stability, strength, resilience, and avoiding all things that compromise any of those traits is the first step. Time is all I have to throw at this horrible pain.

I wish I got to live a different story.

Time to start moving forward

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Today I have an appointment with our solicitor. I need to update my will and remove all DNR language. I am no longer allowed to peacefully and easily when something comes for me. I have to fight like hell. I have to manage chronic conditions and I have to fight cancer no matter how much it hurts. I’m sad about this. I wanted my next near death to be my last. Not anymore.

This was not what I wanted. This was not the outcome I wanted. I didn’t want to have to give up on the idea of a peaceful death because Noah is gone. I am going to spend the entire rest of my life stuck because Noah is gone. It makes me feel so bad that I didn’t have this feeling while he was alive to relish it.

I can’t make my kids orphans.

Today I bug the schools to get enrollment going. I will get over to the Whole Foods collective to get stuff we are running low on. Time to catch up on my bullet journal and figure out what the cheese is happening. Not anything good I had planned. Oh well.

Humbling. That’s the word for the year.

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I know that Noah would be very upset if he knew I used his death as a reason to beat myself up and hate myself. That was not something he wanted at all. He wanted me to like myself as much as he liked me. Like I wanted him to like himself as much as I like him. He never did.

Today I am not going to be able to power through and be strong and upbeat. I feel exhausted to the marrow of my bones. I did not get up and have breakfast on the table by 7 today. I’m letting someone else make food. Luckily I have amazing kids who love to cook.

My baby is now looking for stories about what happens when a parent remarries after losing a spouse. This freaks me out and scare me. I don’t want to bring in a new person so we can “be a family again”. We are a family already.

In the past 7 months I have lost 11 lbs. My waist is 3″ smaller. Every measurement (except for my boobs) has gone down by at least .25″ (calf) or a full inch (almost everywhere else). I really am shrinking away. I am basically the same size, but 4lbs heavier than when I ran my first marathon. I wish I still had all of those clothes. Soon Noah’s jeans won’t be able to stay up well even with a belt.

I want to be open.

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So here’s the thing: bad things are going to keep happening. 2024 was not a great year. I had surgery. Noah had surgery. I was sexually assaulted. Noah had a bursitis issue. My body has been well into melt-down/burn out for some time and my physical pain issues are ridiculously high.

When I felt this bad in California I had to keep working and driving. I saw a chiropractor, an acupuncturist, and a massage therapist nearly every single week in order to function. Now, I don’t function very well. I get the absolute basics done but that’s it and there is no way I would be safe to drive. I had a really intense conversation with myself when my California license was expiring. I had a few options. I could ask a friend to let me lie and change my address so I could get a new California license. Some folks have offered in the past. I could work harder to get a UK license, which would be the correct choice of course.

If I had a license I would feel compelled to use it. I would feel required to make other peoples lives better by using cars more. When I think of how much worse it often got in California because of all the driving? I thank my lucky fucking stars that I have reduced the stress on my life enough that I can control a flare this bad with yoga classes and careful pacing of exercise.

I haven’t seen any kind of physical support person since before my surgery and that was almost half a year ago. I am doing so much better physically than I used to do. I could be doing better if I had more support but that will always be true and I will not have the support so get on with it.

I can only do what I can do from this house. I don’t particularly want to move. The medical care in this city will be limited for the rest of my life. So I can’t drive. I can’t bear the strain.

I gave up having a license after 20 years of having a car meaning freedom and independence. I have lived in cars for a couple of years in non-contiguous spread out periods, never longer than 7 months at a stretch. In a real way giving up my license is giving up my normal Plan B for where I can go in an emergency.

I gave up on getting a license here after not trying very hard to start with.

That means my life will be necessarily small as I won’t ask someone else to do all the travel. That closes a lot of doors all by itself. I want to form relationships with people who live within approximately 5 miles of my house. That’s a significant limit.

I want to be open to the universe, to adventure, to opportunities but it feels like I am being closed down in ever increasing steps and it is weighing heavily on me. In a way the issue of increasing disability dovetailing with a reduction in financial status is convenient. I no longer have to consider how to manage all that disposable income. It’s simple: I don’t have it. I think I did well with it when I had it (paid off debts, built long-lasting wealth) and I think it will be ok to get off that train.

I don’t have to keep working like my life depends on it. Is that fair to embrace when everyone else does have to work in unhealthy ways to survive? There is no fair. There is no deserve. Life is unfair in every fucking way. Me working or Noah working to earn money so that we can justify the capitalist machine grinding people to dust is kinda weird. We can survive without giving our life to companies that make us miserable.

Why in the fuck should we try hard to stay in that? We do need to find ways to be part of community here, but why does it have to involve enriching someone else with our time? Because eat the rich. If we are honest about our life then we sure look like targets. Meh. When have I not been a target?

I want to be open to what comes in life. I don’t want to go forward with a specific size and shape and shopping list of what it needs to look like. I have so many limits. Creating more arbitrarily seems like a recipe for failing at life.

Having a hard time

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I’m upset about the lack of support from the NHS. I talked to someone high up at New Craigs (the psych hospital) and she told me I can’t have therapy until after the trial. I feel like if they won’t support me through the more traumatic period I’d rather set the building on fire than go there for help afterwards. (No I am not going to set anything on fire. I am not a violent person. I will, however, opt out of appointments and treat it like a source of hostility and pain instead of help and healing.)

The GPs won’t diagnose me with EDS or fibromyalgia so I’m unable to qualify for medical cannabis. That leaves me with the black market and a lot of lung damage. I feel humiliated and debased.

I feel like the NHS Scotland wishes I would just die and stop being a problem. Or at least leave the country. They would be happy with either.

My house is down with Norovirus. All three kids have fallen like dominoes day by day and I expect to go any minute.

I’m on a medication break because my usage level has increased times 5 and that’s really bad for my body. I’m not coping well. I’m in a lot of both physical and psychological distress. I believe with my entire soul that the NHS does not give a shit. I’m pretty sure I’m going to develop serious health issues here and I won’t seek care.

Hell, I tried to make an appointment with a for-pay clinic in town. They told me it is obvious I am in significant distress and they will see if they can do anything for me then they didn’t respond again.

This is fucking hilarious because I’m not even asking them to do much. I want them to evaluate me and confirm my original diagnosis information so I can go to a different private clinic with UK records and get cannabis. They won’t do it though.

I feel completely dehumanised and devalued and debased. I feel like dirt.

You are on your own, kid

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I’m trying to figure out how to wrap my head around the next stage I need to move through. I love talking to crazy hippies. They have useful ways of framing issues.

A lot is happening around me and to me and even within me but I am just me in the middle of it. How do I shove these different layers of experiences into different boxes so that I can walk forward with less dragging me down? I won’t be having help from a therapist for this time down this labyrinth.

Rape is spewing out all over the place in ways that are deeply problematic. There are the historical layers of training, response, and even most of the deep suicidality comes down to trying to escape that pain. There is the physical damage and the emotional damage and the psychological.

The physical damage is still present in the forms of pockets of deep scar tissue around old wounds and injuries. When I am extremely emotionally dysregulated this gets worse. Luckily my cunt has been improved dramatically with the lovely process of pelvic floor physical therapy. My back is fucked for the rest of my life–it can’t be fixed. It must be endured.

The emotional damage is in the ways I have shitty behaviour patterns from my life, I am emotionally abusive because I talk about being suicidal. I talk about raging self hatred and how I deserve really over the top punishments to everything. That is emotional abuse towards the people around me and it’s not fair. That’s been an ongoing battle my whole life and I am a lot better than I was, until something happens and I slip. I don’t know that I will ever fully conquer this hurdle.

Psychologically I would say that that the panic attacks and mental confusion and explosiveness (often due to overwhelm) were in a pretty great place as of the start of this summer. I was a little irritable and deep in burn out, but I wasn’t having PTSD abreactions or panic attacks and I wasn’t suddenly screaming from out of control terror. This is the area that I think has the greatest potential for shifting in a meaningful and timely way. I can actually do something about a lot of this, and I just need to get my plan in place. It would be a lot easier if I didn’t have to triage everyone else’s needs. The last week or two have already been a tiny bit of crawling out of the pit.

I’m not ok. I’m sad. I’m anxious. I’m not looking forward to my parents’ birthdays in a few days. I never do. I feel like I am trying desperately to feel connected and love. It is less of a lie sometimes. I know the love is there but I can’t feel it.

I reach for feelings of love and then my brain gets distracted thinking about someone who doesn’t feel able to have a relationship with me anymore. This year I feel my failures so deeply and painfully: the Bonus Mama, the God Mama, and The One Who Got Away are taking up a lot of space in my brain. How did I wreck those relationships? Will I keep wrecking everything in those ways? I don’t know.

I’m scared and I don’t feel very lovable.

My “on repeat” song today is the grudge by Olivia Rodrigo. I couldn’t tell you who I am thinking about. I just know that it takes strength to forgive but I don’t feel strong.

I actually had several better days before today. I hit another bump. Part of me wants to crawl into a hole and never come out again. It is hard to believe I should keep trying since I suck so much. Yesterday was better.

I hope tomorrow is better.

The NHS is going to be a mixed bag for me

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I am experiencing some frustration. This week I learned that the NHS would have denied me the vast majority of the care I received in California because a lot of it ran concurrently. In Scotland one is not allowed to work with multiple therapists and on varying parts of mental and physical health at the same time. It is medical malpractice in this country.

Well, shit.

It was kind of fun recognising that I will have to route around the NHS while in an appointment with a psychiatrist. She got to try and talk me into not giving up on myself. If I come back and beg enough times maybe the NHS will agree to me having more than one form of care over a long period of time where they control all the aspects of deciding what and when.

Oh. It’s like that, is it?

I am going to learn a lot more about private health care in this country and I’m going to get better about lying and denying the care I am receiving. That sucks. I’m not really into lying as a lifestyle.

The NHS will not allow me to have EMDR before the trial. Thing is, I’m not sleeping so good. Flashbacks/abreactions are really bringing me down. My PTSD responses are really dramatic compared to where they have been for years.

The NHS won’t allow me to talk to anyone else while I’m talking to the nice counsellour lady in town. The nice lady who is a student. The nice lady who works for an agency that is supposed to get me help as an overwhelmed mom supporting disabled kids.

That’s what I get.

She’s a nice gal and maybe I am underestimating where I am going to get in the 6 sessions I have with her before I maybe get another 6 sessions through a different charity agency.

Yeah. That’s going to dramatically alter my life trajectory. I’ve been through 34 years of trauma therapy. I’m sure this student will dramatically make progress with my usually “treatment resistant” PTSD in 6 hours. It’s going to miraculous.

I feel very much like I need to settle down and become a wraith. This country favours passivity and non-action in a way that is going to be a problem for me. I am not a person who sits and waits doing nothing. That leads to deep depression and self harming behaviour that I can no longer sustain physically. I can’t. I can’t go back to hurting myself to cope. Too many pieces of me are broken in ways that could be life ending if I keep it up. Too many head injuries.

Is it weird that I am not fucking ok with the idea of accidentally killing myself in a panic attack in a form of self harm that I intend to be a momentary relief of pain going too far?

If I am going to kill myself it is going to be in some way that is absolutely unmistakable. I don’t want to accidentally cause a stroke. Fuck that shit. If I swim out into the North Sea or go to a supervised euthanasia clinic so you fucking know I picked that. I desperately hope that the people who love me will find a piece of comfort in knowing that I waited as long as I possibly could. I know that probably something is just to break on its own and it won’t be my choice and that’s ok too. Then it really isn’t my fault in the same way and it won’t hurt the people who love me in the same way.

I can’t accidentally kill myself by going too far with cutting. That’s not ok. That kind of thing is messy and dramatic and traumatic in a way I don’t want.

Today is not as bad as a lot of days have been this week but I’m still not feeling strongly attached to the idea of being alive. I can’t hasten my death, and in fact I am required to act in ways that will push it away to further in the distance. It’s feeling really hard.

Like most people I don’t love being in pain. It is hard knowing there isn’t a way out. I sure as shit am not going to be asking for much of the NHS. As much as I don’t love being in pain I’d rather just go through my life in pain instead of hearing over and over that I am not good enough for the thing I know will help me. I don’t qualify. I haven’t jumped enough hoops. Why don’t I jump a little higher and wait a little longer?

These are the people who think I shouldn’t be allowed to have the sex life I want or the marriage I want and they probably think I shouldn’t have been allowed to have children. I should have waited until I was all better to go have these normal things. I haven’t done enough time waiting to deserve the things that other people get as table stakes. I’ve heard this story my whole life.

I am allowed to have what those people need. Fuck my needs.

This is where I am an absolute rubbish example of living consent culture. I was told no, I couldn’t have what I asked for. So I went out and found a way to fucking steal it anyway.

Not exactly but it sure feels like it standing where I am in this moment. Really I just found a way to pay for it and I hunted high and low before I found people who would help me on my journey. I’ve done a lot of things to try and be more ok. I’ve been doing really well for a lot of years now with only a fairly normal person amount of range of volatility.

But hey, it doesn’t even count as rape in this country. It shouldn’t bother me so much.

In a major way I feel like I am far more wounded by how this affecting Noah than I am by the assault. My life is different than it was 4 months ago in ways that feel savagely unfair and painful.

I’m not working hard at chasing down Vicki interviews. I can’t focus. I can barely think. My productivity is somewhere between 25% and 50% of my normal and it feels like an enormous stretch goal.

I feel like a wraith who should fade away to mist. The fire and energy that usually propel my survival have abandoned me. I don’t feel like I have enough faith in what I am going to do moving forward to just charge forward blindly with great force. I don’t have the energy for a bunch of false starts. I don’t. I want to curl up under a bush and never come out and let my body go back into the earth.

I feel ineffective. I feel useless. I feel like there is no point to how hard I work because it will always come back to how fucking worthless I am.

It’s hard home educating three autistic kids. They need a lot from me. Most of it I have to repeat many times. It’s exhausting. I feel like depression is covering me like a weighted blanket on top of the burn out I’ve been feeling for a long time.

One of the hardest things about the way we home educate is we don’t have the neat and tidy ways to check and see if you are doing it right. We don’t have marking periods and standardised tests. We are just living and no matter how much I do for them I never feel like I have done enough. I always feel like I am failing to teach them a lot of the things they are going to need to know. I felt like that as a classroom teacher too, even though my students went up by more than one grade level on average after a year with me. Many of my students caught up on four or six years of learning with me because I could tune in to where they needed to be reached. I worked with kids who had a lot of emotional struggles.

My adult life has been spent trying to give children the things I never got and I am feeling like a very empty bucket. I have been doing this work for 24 years now. Hell, I was a nanny and a babysitter before then. Normally I’m pretty ok with taking it in stride that young people need a lot of reminders. Right now it is hurting me desperately.

I don’t think anyone is doing anything wrong in my house. It’s hard when I’m off my game. Noah does a lot of consistency management for our family but I’m usually the motor. I feel like I lost some integral part of my mechanism and the gears are just not going and I don’t know what to do.

No, I don’t want psych meds. They are not going to clear the cobwebs they are going to make my body start feeling like I am trying to kill it. No. I have walked that road. I’ve tried so many drugs that doctors pushed on me.

EMDR would be very helpful. I’m going to look for private. I think that’s a thing I can make happen. Holy shit. Maybe I really fucking should not. I am not a good liar. I’d really like to sleep better.

It’s been hurting so much that this overlapped with getting kicked out of bike stuff. The woman who had invited me into things in the first place no longer wants me there. She asked me to stop coming because I make her uncomfortable. It’s not that “everyone” there dislikes me–she was the person I was there to get to know because I liked her. I never tried hard to get to know anyone else because my assumption was that I would be too weird. I hope they do well in the future. I think it is important work.

It is not the fault of Highland Pride that I was sexually assaulted in any way shape or form. I am going to be scared to step forward with that community in the future anyway. I feel like I am trying to back out of a lot of kink stuff locally because I am obviously making so many people feel uncomfortable.

Hey look, the bitch who was “too much” in California is also too much in small town Scotland. Duh.

Maybe if I hide for a while before coming back some of my spiky edges will be forgotten. Maybe I will figure out some piece of work to do that will buy me a place even though I am so awful.

I don’t really have hope for things feeling better right now. I know they will at some point but in this moment that seems ridiculously impossible. This always/never place is really dark. I feel scared and empty. I don’t know how to keep giving right now without a lot of very bitter and sharp detritus coming out instead of water.

I’m in a bad place. It is what it is. There is no way out other than going through it.

I know Noah is trying to walk it back because this is hurting me, but I am deeply wounded by him saying that I betrayed him in this situation. I feel wrecked by this. I wasn’t a little bit bad I was so bad.

Right now I feel like I don’t know how to be good enough to deserve anything good. All I deserve is pain until I die. I’m not working enough to be a good tool. I do bad things that hurt people. I speak too sharply because my entire consciousness is permeated with pain and it leaks out and then I am even more bad.

I feel like no one should have to deal with someone as awful as me. I feel empty of goodness. If I ever had any it is gone.

All that is left is a haze of inefficient malice.

See, I’m being good. This is not social media where I will have lots of people yell at me that I am bad for saying any of this because it is not fair that I am “triggering them”.

Fuck me. Why don’t I just shut up or die already?

Body data

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My first tracked 3 mile run with this watch was mid December and it took 49:09 for an average of 16:24/mile.

Today I ran 8 miles in 1:50:10 for an average of 13:46/mile. That’s a pretty awesome improvement.

In January I did a bunch of measurements of my body so that I’d be able to see the changes as they happen. I measured myself this morning.

Since then I have lost .5″ off my upper arm, 1″ off my upper chest, 1″ off my bust, 5″ off my waist, 5″ off my hips, 2.5″ off my thigh, and 1″ off my calf for a grand total of 16″ inches taken away. That seems like a lot.

I have dropped 20.5 lbs in 7 months. Even though I do not follow Weight Watchers anymore I keep in mind that they would not encourage losing weight much faster than that.

I have just under 7 weeks to go. I plan to be the laziest git ever in October. I can do as little as humanly possible. Ugh I’m tired.

Another Day In I Am Too Tired For This Shit

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My bed is 7’x7′. How in the hell does a child turn sideways then fall off the bottom?

Yesterday MC had their first visit for assessment to see what sort of neurological testing will help find the correct diagnostic labels so that I can narrow down my research on how to support them better.

It was a good visit but, I think, not what the lady had planned. She had a sheet of questions to ask. Instead of going through those questions MC went through a prepared list of the things they have a hard time with. She flipped her paper over and scribbled like her life depended on it. She scheduled an appointment for me to come back alone and fill out those questions about developmental history. 😂

I had talked MC through how I handle appointments as an adult who does not have anyone to report on childhood milestones/attainment. I forgot that MC is not having my life. Whoops. It’ll be fine.

MC is automatically getting 3 separate assessments based on clinical presentation in this appointment and the intake lady hinted about others that might be relevant after we can actually go through developmental history with a fine toothed comb.

This is how seriously Stanford took EC. I was deeply worried I would not find a way to access similar granularity of help for MC/YC. Stanford did *not* take MC seriously. Stanford asked MC 20 yes/no questions and told me I had a perfect little boy I didn’t need to fix. That was really frustrating. This time the lady watched MC almost vibrate off the chair and noticed “Do you find that you are ever able to sit still?” Only if the kid is in a severe dissociated state because they are imploding under the weight of their own anxiety and it is combined with mutism. No. They can’t just hold their body still like a “normal person”. It is not possible for them.

I am feeling a lot less nervous about this process now. The lady also took it very seriously when I said I have two other children who are also clearly neurodivergent. I don’t know what will come of her making notes about my other kids as well. YC isn’t even on a waiting list at this point.

YC’s flavour of neurodiversity is pretty easy to accommodate within our already heavily modified for neurodiversity lifestyle. EC is doing really well with the structure we maintain. MC needs… something I’m not doing and I don’t know what. I am grateful that the NHS is trying so hard to help me figure out what I should do.

The lady looked really pained when I talked about my own history of being beaten up in school after school and how I was not even a tiny bit surprised when people beat up my children in school. Autistic people are magnets for bullying behaviour.

Human beings often want to hurt people who are different. It’s a thing. A really sucky and terrible thing. I was glad that she showed absolutely no sign of believing that it would be best for my children to be in school. *phew*

Stanford Child and Adolescent Development was quite adamant that there is not a better learning environment for EC than what I provide. They had tiny tweaks to suggest, but nothing major. I hope that the NHS can help me find the tweaks that will give MC also the best learning environment for them. Right now there are a couple of areas that concern me and I don’t know how to fix them. I do need outside guidance.

It’s kind of funny that EC doesn’t mostly overlap with my learning difficulties. His troubles are out in front of me and I can study them without feeling emotionally connected. I just need to support. MC and I share some of the same struggles. The ways in which I have never managed to overcome some of my own challenges inhibit my ability to figure out how to help them make progress. I need a more objective view.

But first I need to go run 4 miles. I’d rather eat glue.

I hit the wall this week. I think I was lowkey sick over the weekend when the kids were all very sick. I kept exercising and working the whole time. I don’t feel like I’m still dealing with a fever but my body wants to tell me to go take a long walk off a short pier. I can’t even tell how much this overreach is about physical load and how much is emotional load.

I feel like my soul is hurting. I miss the physicality of all of my California friendships.

It is already getting much colder and I am not feeling great about the change. My body is hurting a lot. I felt like the tiny increase of warmth of spring was a huge massive welcome change and I was going around outside in skimpy clothing because I was overheating. Now the same temperature range is making my bones ache.

I am not sleeping enough. I am rarely laughing and that can’t be good for me. I feel somber and like I have a flat affect. I feel numb. How can you feel numb and pain at the same time?

I really need to go run. I feel like that is an absolutely outrageous ask just now. Oh well. What I want is not important. What matters is what I do.

We’re All Mad Here

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I was reading an article that included the phrase “Mad Pride” about how mental illness has been perceived by society (mostly the US/Canada/UK) over time. It made me stop and think hard about how much my life has changed. I am in the closet now in a way I was not in California. There were times in my younger years where I would keep some things under wraps (I was militant about limiting sex life conversations with some groups of people) but mostly I didn’t hide any aspect of myself to such a degree that anyone and everyone couldn’t find out if they tried even a tiny bit. 

There is a big difference between “I don’t share personal stories about my sex/romantic life with students or homeschooling parents but I write about it explicitly on my public blog” and “I took my writing private so that someone would need at least a basic understanding of the internet archive in order to find out anything about me, I stopped writing about myself publicly on any topic that might be controversial and I no longer bring up or mention most things about my past and I am actively evasive with every person who does not have connections to my former life.”

It’s different. I am feeling more comfortable in the community. I feel like I probably do not have to remain quite this guarded permanently but I feel intense gratitude towards myself that I allowed myself this runway of time to have a place in the community where I am already seen as stable and competent and fairly well educated, especially in topics that are not well understood already here. I am starting to have that boost to the ego experience of having people say, “Oh Krissy I wanted to ask you about something. I don’t understand why ____?” When that something is often related to an aspect of interpersonal communication. I’m also getting more requests than I can take when it comes to organising level responsibility for different community groups or associations. And folks are asking me how I have taught my kids (thing). That’s definitely one of my sweet spots for feeling like I am not an imposter who should shut the fuck up.

It’s not that I think everyone should do what I do… that would go poorly. What I really appreciate is when people are interested in the process of how I figured out what was right for me because understanding that process is the bit that can help other people. They will have a different right answer in the end, but maybe seeing how I made decisions that align with my values will help them crystallise what their own values are so they can feel confident in their own choice. I like talking about parenting philosophy, not parenting choices. Because we are going to make different choices and that’s absolutely great. It’s mandatory. It’s as it should be for there to be the delightful variety of folks that this world needs. But the philosophy behind parenting is a place where you can discuss motivation and intentions and you can learn from each other without getting into a pissing match about technique. 

Technique is hard because it’s a minefield of traps for not understanding your own privilege when you frame what you do. Noah says that society has as much justice as it can afford. It’s complicated because often a family has as much justice as they can afford. And from family to family that is such a complicated and loaded concept that oh goodness just no. Can’t.

Anyway. The article. It goes through who is allowed to be mentally ill in public now. Who benefits from hashtag campaigns and public awareness movements around mental illness? It’s a short article but provocative in a way I agree with. I am so deeply aware of the privilege I enjoy at this point in my life. 

But this privilege comes with costs too. Costs I could not have imagined when I was on the far side of that particular privilege slider. 

I’ve been watching a lot more sci-fi/fantasy shows and movies recently. I am particularly drawn to things that are depicting ways that people live with an understanding of there being completely opposing truths/narrative/existanses existing all at the same time. 

So, I like to talk about money. If you have been here for a while you have seen the arc of that from poverty to (I think) fairly substantial wealth. When you are new to a community you only really exist from the moment they meet you. Your past is invisible and unknowable. Ok fine with google they could look me up but they don’t. I write all over the fucking internet. I have one handle I use on every site and I am so trackable it is definitely what a security expert would frown upon and give me a lecture for. I am consistent in part because that is my absolute only talisman against being called a fraud. My story is too whack-job. But I gots receipts, bitch.

I have suppressed so much of that over the past few years. I have been so very silent. It is taking a toll. 

The pendulum is going back and forth on so many different dynamics in my life. In one way I feel like my kids just got out of a big disequilibrium period (or at least some combination of them) and I am slamming my way into one with full force and fury. There are a whole bunch of things that are not working and I need them to change. 

I say over and over that disequilibrium is a necessary feeling for everyone because without it you probably won’t grow. You will get complacent and comfortable and you won’t want to face the terror and uncertainty and pain that comes with change. I have to get angry to have the force to demand change. I have to feel like I will wreck big things if the change doesn’t happen.

I am doing a med change. Amitriptyline and Lisdexamfetamine are not working for me anymore. There are enough negative symptoms with using them that I just cannot. Sex just hasn’t been happening. I’m not happy. I’ve been intermittently explosively raging for quite a while and it’s just not ok. I don’t like me. I need Patience, and I don’t mean the drink made with a whole lot of bourbon.

It feels silly to say this but I want to drink less. (It’s silly to say because Noah and I both have recently put in MASSIVE orders of alcohol.) I got variety. I got stuff that I want to invite other people over and say “I have x and y for you to taste test.” I want a social gambit, I don’t plan to consume much of it myself. I is making friends. 

I have a teeny tiny bit of regret about buying this house because it is huge and has been really rough to repair but I can’t tell you all about it because a Shorty has just informed me that there are gingerbread pieces waiting to be made into a house and I am all out of time.

I’m about to fucking explode, y’all.

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I am not ok and it is perseverating in my head and if I don’t set it down somewhere I am going to continue to freak out in my house with my kids and that’s not cool. So let’s start there, shall we?

My kids are acting appropriate for their varying ages. All of these stages are hard at this moment in that awesome way that sometimes cycles pop up. My oldest is a fucking teenager with a fucking rude teenager mouth. I feel like he just has to tell me I’m wrong or express exasperation at my stupidity over and over all day long. Often at times when I am not actually wrong or being stupid. I mean… when I am wrong I tolerate a fair bit of sass but it drives me insane when I’m not wrong. Middle child is not wanting to accept responsibility for some areas of forward progress and I’m struggling with that. Youngest is pushing every button and boundary like it is her job… because it is.

So that’s all fun and the background noise of every single day.

I went back and checked my logs (hi, yes I am incredibly obsessive about tracking all kinds of stupid details) and starting in June I went from sleeping 8 hours a night on average over the course of the month to sleeping 6 hours a night on average. The months since then have hovered around 7 hours a night on average. That’s pretty certainly part of why I have been doing much worse. Why did I start sleeping so much less?

Ah, fucking lockdowns are over and I feel incredibly pressured (mostly internally) to get out and Meet People and Volunteer and Be Part of the Community. Also this summer has been quite energetic with gardening tasks as I’m moving towards the permaculture/low key food forest direction. I’m super tired. Also eldest said, “Let’s go ahead and finish the lounge” and I said, “Oh uhhh ok.” I was kinda hoping to procrastinate the work long enough for the paint to go bad. Then I found out my old buddy was coming and I have some projects I said he could help me with. So I started sprinting to get stuff done before he arrived.

Reader, I fucking failed.

I’ve been very much working beyond what I should be. Oh, and late May was my first trip down to England to see A & P then in June I went back down to England to bring Noah and the kids to see A & P. That is seeming like the best decision I made all year.

Oh, and I averaged 6 hours a sleep a night the month I had fucking covid and I slept through 4 days entirely. THAT’S REALLY FUCKING BAD.

I’m not ok, y’all.

July was a sprint of work I was not physically prepared for. I have never taken time to really fully recover from covid, not really. I certainly haven’t carefully increased exercise over time to get back to the fitness I had.

August was a super sprint of work and it was exhausting. September was a lot of work sprinting plus my birthday which was absolutely fucking exhausting to the extreme and I probably made some foolish choices. I was not physically fit enough to do what I did comfortably and I have paid for it. October has been more and more work and then Noah and EC went off to Helsinki then the morning after they got home I ran off to San Francisco in a last ditch effort to say goodbye to A.

In a way there are shadows of my uncle passing. I was too late. I feel like I failed and I am upset with myself. I did get to help P with one of the thornier parts of handling A’s belongings and I am deeply grateful I could perform this service.

Being in San Francisco involved a ton of driving (ow ow ow ow ow ow ow ow) and many hours of work and many different social interactions one right after another and very little sleep. I just couldn’t except for a few times when I passed out in awkward scenarios. Three people said they wanted to make plans then cancelled at the very last minute. Woo. That’s always fantastic.

My buddy is a challenge in many ways. I don’t want to say too much about that but I will say that he is very emotionally needy and he wants me to help him process and understand his entire life and that’s a fucking tall order. I am not a therapist. I feel like I am drowning in his feelings. He also can’t remember a lot of our conversations because of how much he drinks so each conversation has to be repeated a few times and that is really frustrating. I don’t begrudge him the needs but my bucket is so fucking empty.

I feel empty. I feel like I can’t take more shit being dumped on me. I feel like I want to scream and scream and scream until I have destroyed my voice from screaming. I want to sleep for several weeks in a row. I want to stop speaking to people at all and I want to go back to lockdown. I am so far into burn out I feel like a pile of ash.

I know that I am a good person to help people process grief but right now I can’t handle the flood of it. It’s not just the one buddy. I feel absolutely surrounded by loss this year. Grandmother in law, A, my buddy’s parents, other friends have lost family members, a different buddy is dealing with her kid self-harming, a somewhat surprising number of pets have passed recently and folks want to talk to me because I give them comfort. Right now it feels so hard.

Oh, yeah, and it’s been an incredibly stressful year on the money front. I think things have settled down now and while we are not fully “on track” we are in a very reasonable place and I’m no longer worried about bouncing payments. But it’s been a fucking lot.

Err, also my roof just got replaced and the scaffolding and construction fuss have been irritating and challenging because to a large degree it has meant that YC has not been able to play outside unsupervised for over a month. That’s not a great situation.

I’m not exercising enough. I stopped my yoga classes because we need to be contributing more to savings. I’m not eating well enough–I am actually not enjoying the kids cooking 4 nights a week because rarely do they put more than 1 vegetable serving in a meal and it’s not doing great things to my body. I’m sleeping for shit.

It goes on and on and on. I’m sure I’m not remembering all the fuss. My head hurts. I am tired of being tired.

Movement is good for you; I hear.

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I posted most of this on the book of faces. But I should start using this space more.

Neurotic tracking is neurotic.

I wasn’t great about tracking my bike miles for the first few months of 2021 so I am pretty sure my year total is lower than it actually was. Then in 2022 we went to Texas and did way more walking than usual… but I didn’t bring my watch charging cable so I didn’t track any of it and then the watch strap completely broke and took a bit to replace in late July/early August. So numbers are fudged a bit.

That said: in 2021 by Sep 1st I had taken 1,653,242 steps and ridden 883 miles. (By the end of the year 2,300,012 steps and 1,165 bike miles.) In 2022 by Sep 1st I have taken 1,438,755 steps and ridden 908 miles.

If I don’t want to be behind last year’s final totals I’d better get my butt moving. Last year I was under my goals for myself in terms of movement by a fair bit. I don’t shoot for 10,000 steps a day. Personally I try for 7,000 and I have not been hitting it. In a year that adds up to 2,555,000 steps. I missed it by 254,988 last year. That’s over a month of missing steps. Ugh.

This year I am so far waaaaay lower. This is not good. I am already 262,245 down this year. That’s super sucky not good. Ugh. My bike odometer says I have ridden 920 since I got it the week of Christmas, so there wasn’t a lot at the end of December on this bike due to all of the ice on the roads.

I feel like I am very much not close to where I want to be in terms of being able to run (I have not regained fast-twitch muscle activity *at all* since the youngest was born. Ugh.) I know I need to sit down with the training book Blacksheep gave me and make a plan.

I think that the work I get done in the garden this September is going to mean that next year I will not have any big structural jobs and I may even have time to go work in the volunteer gardens in town. I haven’t managed much this year because I’ve been drowning in house/garden work.

My birthday is coming up so of course I am going deep into that funk of “What the hell am I actually doing with my life?” Well this year my hide-from-life birthday retreat will involve a 90 mile round-trip bike ride before camping in the rain. No weekend long binge of The Witcher this year.

In order to catch up on steps I need 9,150 each day between now and the end of the year. *sigh* I don’t have any specific goals about bike miles between now and the end of the year… but I feel better when I ride more and my kids have never regained their full fitness after covid. So. Ugh. Fudge.

I watch this shit like a hawk because if I get too sedentary then I lose strength and then I injure myself then I am stuck in a chair for months and the recovery period is slow and nightmarish. I haven’t had a big injury… in a long time. I can’t remember the last one. I am dancing on the edge of overwork issues with my arms and back right now with all the gardening/painting. Oofta.

Ok. Now that I have reflected it’s time to get off my butt. Daylight is no longer endless and apparently I have a lot of miles to cover. It doesn’t help my sense of impending doom that my birthday is coming. Stupid birthday. I hate you. It’s not that I mind getting older. It’s just that it is usually such a very terrible day. I feel bad that I can’t be present with my kids on my birthdays. But I can’t. That’s just the reality. No sense in denying a thing that is just true. Thanks, mom, for this gift that just keeps on giving. I mean… I know it isn’t her fault at this point. She hasn’t ruined a birthday in over 20 years. But there is a broken piece there. I have tried to fix it and failed. I am putting all of my try into other places; I have none left for something as stupid as my birthday.

Alright. Time to work.

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.

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.

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.