Tag Archives: adventures in the NHS

The roller coaster of emotions continues

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One of the most intense parts of my marriage was the way that Noah made space for me to have every feeling. I didn’t have to only have the ones he wanted. He didn’t like it when I was in a bad mood. He didn’t like it when I fell in love with people. He didn’t want me to feel sadistic. He did try to control me such that I only had the feelings he wanted, but when I went off the rails he would build a protected site around the crash zone like he was defending evidence. He didn’t have to like everything I felt. He had to protect the space for it to exist.

I looked at one of my tracking things. Ah. This is going to be an exceptionally vicious PMDD cycle. It’s kind of a terrible thing the way bodies change each other. I’ve been talking to my children about our cycles. I’m real worried one of them has endometriosis. Their aunt recently had a hysterectomy and is having to go back in for a second surgery because they couldn’t get all the endometrial cells in one go. She’s in her 20’s. It is fascinating watching how people use my DNA and Noah’s to have experiences that are hauntingly similar to me and yet dramatically different as well.

Before I had kids I usually had my period 9-10 times in a year. That’s not awesome. Folks who are inflicted with a uterus are “supposed” to have more like 12-13 in a year. I had never had sufficiently good nutrition to bleed as often as I was supposed to. In a way this was protective because the depths of my suicidality were hard to bear 10 times in a year. I’m grateful there weren’t an extra 3 cycles.

My children bleed 12-13 times a year. It’s fucking wild. I now bleed 12-13 times a year. What the absolute fuck. Most of the time it’s moderately inconvenient but my PMDD cycles have improved dramatically over the years. At this point I have a really extreme PMDD cycle 2-4 times in a year. It has gotten lighter and lighter with the birth control I’ve been on since Noah died. I no longer hemorrhage every month! It feels super good for me.

When I am this kind of depressed and low and sad and self hating Noah would take the opportunity to poke me really hard. In this state, when I’m tetchy and crotchety and oversensitive like fuck, he could get me to say true things that I won’t say the rest of the time because I’m too inhibited. I would complain about things that I usually suck up. He savored having access to my brain in this weakened state. I couldn’t defend myself by hiding all the things that bother me. They come tumbling out like a waterfall.

I barely snapped at Gentleman on Sunday. I was a hair bitchy. I immediately walked away to calm down and I came back and apologised. He let it go. There was no drama.

I have barely spoken to him since. This is not a space I can inhabit with people anymore. When I feel like this I need to avoid people.

I am always the third to bleed. There’s an order with the kids. The severity of the first person often indicates how the wind is blowing. All of us are having an extremely low month. Not one person in my house has hope in their heart right now. Instead what we have is the ability to sit together and commiserate about how awful it is to have your brain do this. We bitch loudly about how much our bodily functions are ridiculous and impossible and stupid and mean.

We talk about a lot of what is making us sad. I am leaving big pieces of my sad out. I share the things that feel appropriate. I am careful. I am moderate. I think about their needs before I speak my troubles.

I miss Noah. I miss being married to a tremendous asshole who gave me permission to be an asshole because we matched. I could say any rude thing to him and I didn’t have to apologise.

I will certainly never feel ok being a raging asshole at my carefully polite English boyfriend.

It’s definitely a day to hide and scream all the things I will never feel ok speaking to another human being again.

Enh, except for all the hours I have to do my day job. And I’m meeting friends. Parts of the schedule have to go on even if I feel like shit. It doesn’t matter how I feel; it matters what I do. I need to see friends and not be an asshole. There is no space for me to be an asshole anywhere in my life. I don’t think I will ever deliberately bring an asshole into my life again. At this point I don’t have the time and space to smash the rough edges off before bringing them around my kids. I had years to work on Noah. He was allowed to be an asshole the way I was allowed to be an asshole: in a room alone together. Not at our kids. Not at our friends. Not at people we loved. Not at coworkers.

If people in public react to me being visibly distressed I can say “I miss Noah/my husband” and they will nod and stop asking me questions and that’s neatly handled. I don’t have to tell a very big piece of the truth. I am not allowed to word vomit my pain on anyone outside of my house. That’s private. It’s not a secret (obviously) but it’s the kind of thing people don’t want to see in public. There are rules to the social contract. The rules here are far more strict than where I am from. Publicly weeping and sobbing is not acceptable. Get your shit together.

I am definitely definitely definitely not allowed to say mean but very true things.

The only person who ever wanted that from me is gone.

It is a relief that what I am left with is people who weep with me and say things like, “I’m very glad that even on my worst days I am incapable of believing ‘no one likes me’ because I have you.” There is so much I have done wrong in this life, and so many people I have hurt with mean but true things. I feel the weight of it all the time. I am so conscious of how I have failed people. I have not failed these three people. I’m doing really well.

We live in each other’s pockets in a way that is far outside the norm for most humans. When Noah was here it was so intense. Since he died the older kids have started leaving the nest more as they gain adulthood. Pretty much the main time I am not in a room with my baby is when I am smoking pot. When I get access to pills I will have an unholy number of hours a day with her. Frankly, she needs them. She needs to be around other humans and she needs a lot of assistance interacting with the world.

I knew I would have high needs children when I was 17 based on my lived experiences. I wanted to have them and meet their fucking needs so I could find out what people like that were like.

My children tell me regularly that they appreciate all that I have done for them. Well, they don’t tell me that at all until they are about 15. At 15 they start having gratitude. It’s been terrific to experience. I thought it would take till their late 20’s if we ever got to this point at all. They know that I have pretty much given up having independence for this indenture. I have given it my whole fucking soul and almost all of my time for 18 years with another 9 years 5 months and 17 days to go on my term of indenture. I am a walking, talking, world interpreting edutainment experience. I am a fucking 3 ring circus. I help my autistic weirdos understand the gulf between their life and what everyone else is experiencing.

It is hard as my kids develop their own alphabet soup collection. We walk into assessments prepared with our fucking data. We talk about all the things we do actively on a daily/weekly/monthly basis to manage our complications and symptoms. I have to admit it is tremendously fucking awesome that in every case the specialists have said, “You are already doing everything we try desperately to get people to do. You are the embodiment of best practices.” I like validation as much as the next insecure nitwit.

I am struggling with the ways my internalised ableism rubs up against the reality I live with. I want us to make tremendous ambitious plans. I have always made ambitious plans. It’s different now that Noah isn’t here to catch me when I crash and burn. When I got home from the road trip in 2015 I was in so much pain that I had lost most of my peripheral vision. I didn’t move for about a month. I let him do everything for the kids and the house and unpacking from the trip. I was completely numb from pain. I shut down entirely. I pushed way past where I should have stopped because I couldn’t let myself fail.

Do you know how cool it is that my kids make prudent choices when facing risk? They understand the difference between pushing through something being hard and doing something stupid. I think back to the choices I made at their age and I marvel. These people are going to do fine in life. They are bold and they do cool stuff. They also make conscious space in their life for the need to collapse. They create room where it’s not failure, it is accepting that they can’t do something on a given day. They can get back to stuff later. They don’t feel the same drive I feel to push through no matter how much damage they are inflicting on themselves. They talk about the recovery costs and why something isn’t worth it. They actually believe the shit I say. I’m over here saying it hoping that someday I will believe it. They have arrived. It’s wild.

Living with them is really cool. It scares me though. I don’t like receiving help from them when I’m the one doing the worst. They are kinda insistent. We are so alike. We do a lot of staying out of each other’s personal business on stuff. Privacy is a very big deal in our house. Rooms are not to be entered without permission. I don’t like going through people’s stuff. It makes me feel like shit. I do it as little as I can. My plan here is to earn a relationship with my adult children. I have to respect them as autonomous humas to get that. I have to start early and practice what I preach the whole damn way through. It’s not easy. I have as big of an ego as anyone else. There are times I want to shine/shape them around making me look good. I breathe deeply and let it go. I need to look good or not based on whether I am acting right. Not whether I can make someone else act right. Which is complicated. I don’t believe I should control how my children dress/wear their hair/enjoy appropriate media. (Of fucking course I keep the inappropriate media away from them. My kids are sheltered little bastards. They will give you long lectures on the harms of watching pornography before you have your own sex life.)

I am feeling tremendously insecure. I never feel like I have done enough. I haven’t gone far enough to push my kids into learning/proving they know/earning some award. It’s an awkward thing to carry. I offer my children the chance to opt in to proving what they know in ways that will be more seen to the outside world. They shrug and move on with doing things how they like to do it. I have to cross my fingers and pray. At some point they will want to earn more money than I want to pay them. They will figure it out. I have faith.

It is a fascinating thing having almost all of my attention turn to Shortie. I’ve not had this one on one experience with a learning child before. My older kids are just over two years apart. They have been a pair for a long time, even though they were always learning at different levels. They had to share activities and time. My youngest has been baggage for most of her life as she was dragged to their stuff. Now my days are focused around her in a really dramatic way. This is the amount of time/attention my oldest is grateful he never experienced. He is quite certain that he is glad he is not an only child because I would have crushed him under the weight of being my sole project child. He is probably right. Shortie won’t be crushed because I am a lot more burned out than I used to be. I don’t have as much force to give. I am tired down to the marrow of my bones. I am with her. I answer questions and interact with her a lot of the time. I am also lying still while reading a book a lot of the time.

I am being very careful not to become my mother. A lot of what I struggle to forgive my mother for revolves around the ways her extreme neglect allowed me to experience really vile things. I was lonely and isolated and she had no way to try to ameliorate that. She didn’t have any money and she didn’t know how to do it while we were shifted from room to room in city after city. I have spent my entire parenting life afraid of the knock on the door from CPS/social workers checking up on the welfare of my family. It’s kinda funny. I’m really racking up points on that front. I’ve been reported in two countries. In both cases the social worker ended telling me that they have great confidence I am doing all that can be done in a difficult circumstance and they wish me the best. Authority tends to approve of me when it shows up to spot check my work.

People who don’t like me and who judge me stay trying the system though. They are certain that their dislike of my methods is proof that I am doing awful things. The first time the bad thing was entirely outside my control and I was managing it as well as a thing can be managed. The second time it was for absolutely fictitious and malicious bullshit. Something that was demonstrably untrue as soon as you walk into the house.

There are a lot of ways that I am a failure as a human being. I have never tried to deny that. I am a really good mother. I am an excellent teacher. I am as much of a saint in the patience department as Noah ever was and maybe even more. I am masterful at coregulating people who are distressed. For these three humans I am a gifted interpreter for the world. I can see the gaps in the schema they have experienced and the schemas of the people around them. I can talk about cultural/social differences and why other people are going to start every conversation with a completely different point of view. I talk very concretely about the water we swim in with our little pod. I talk about the rules and the structures that have shaped it. I talk about how their father and I came to the set of agreements we did about how to live in our little glass bowl together.

As young adults they tell me how grateful they are that they have completely missed that most of the world is obsessed with dieting. I fucking love that my child can boldly assert in their medical appointments which symptoms started long before they were obese and adult sized; they happened when they were a skinny little fuck of a young kid. The obesity came afterwards and was caused by the symptoms. When we talk about how active we are despite our demonstrative disabilities doctors express great surprise and delight. They wish they could get other patients to do even a small fraction of all the adapting we have done.

My kids have come with me on my journey towards taking care of my body. They watched the elimination diets and nutrition work. They understand why I exercise like it is a job. We are all as active as we can be and that means sometimes we drop out of everything for six or more weeks because we are simply unwell. Sometimes it is six months. Acceptance of this variability is embedded in the walls of our family home like a placenta embeds itself in the uterus. We carry this shell that permits us to be weak and not well without being impacted by the larger world. We have our own experience of being alive. It feels intensely privileged. I also know that I was sick like this when I was poor as fuck. It’s not always been like it is now. I have not always been safe. I have always been sick.

If I had a full diagnosis list before I had children, would I have had children? I don’t know. I know that two of my children are on a path to try to have their uteruses removed ASAP. They have no interest in 40-50 years of this. They watch what my body goes through and they don’t want it. They are each having their own painful and terrible journeys that are complicated for a lot of reasons.

I’ve been chewed out for using the language “inflicted with a uterus” because it sounded “derogatory to cis women”. Obviously I took that on and complied instantly, no? Obviously the feelings of cis women on the internet need to drive my language evolution. I should definitely not direct my language at the nonbinary person and the man who both happen to be inflicted with a uterus who are under my care. I should not care about their feelings at all. I should not at all casually refer to the fact that having this organ is fucking brutal when it doesn’t function easily and well. Some cis women have dandy experiences with their uteri and that’s not my damn problem.

We are humans having a collectively miserable experience with this organ that was inflicted upon us by fate. We didn’t choose it. There is camaraderie at many levels that are good for my soul. It’s also awkward sometimes complicated that I will probably have different conversations with my daughter. I don’t push her towards being cis anymore than I pushed her siblings towards being trans. I ask my children to confirm their identities and pronouns with me on a semi-regular basis. I want to respect status updates and I know that sometimes telling me is a little hard for a lot of complicated reasons outside of my control.

It’s kinda annoying that I am a fucking saint when it comes to accepting their various difficulties and they still sometimes go through paroxysms of terror that if they tell me a thing about them that I will suddenly reject them. It stays not happening. They have to have their feelings anyway. It’s kinda nice that the older they get the faster it is ok to slap a quick “Feelings are not facts” in their direction so they can mostly snap out of it. It’s really neat to have such a relationship with people who have been trained all their lives how to have feelings but not be controlled by them. They have all their damn feelings. They know how to walk out of rooms before the meltdown starts. They know what kinds of questions to ask to get the exact information they need. They understand themselves and how they fit into the world.

Yeah. There’s a lot of shit I have been repeating on loop in my head for days. True things. Mean things. I am not saying any of them. I’m not writing them down either. Instead I am letting myself be aware of how lucky I am that my baseline is hiding at home with these people. These people who understand that when they ask me who I am meeting and I say “I think you would be happier not knowing” they need to nod and change the subject. I offer information freely on demand. If they actually want to know something I will tell them even though sometimes knowing things can be a burden. I will tell the age appropriate version of that story.

There’s a lot I suck at. There’s a lot of areas of life where I feel like a giant failure. I will be grateful every day of my life that I got to make a family with Noah. I like our children very much. It is an honour to serve them. It is the blessing of my life that I get to raise people of my blood the way I see fit. I couldn’t make “perfect” children by the measures that other people use. My children will not validate me by graduating from top schools. They will have eclectic lives shaped by the disabilities they inherited. There was no way for them to avoid some of the poor hands they have received in this game of poker. The deck was stacked against them. It would have been awesome if Noah and I had understood our genetics better before we had kids. Instead we looked at each other and said you are shiny I wonder what the babies you make will be like? They are fucking rad and I love them so much and I am so proud.

Tomorrow my kid turns 16. One more official milestone without Noah. It is now hard that their birthday triggers the quick two week period with our wedding anniversary and my birthday. I think this is going to be a brutal run this year. It should be our 20th anniversary. We weren’t sure what we were going to do for it, yet. He was going to tattoo me for our 30th anniversary. It felt like a safe time to go so far.

I have a hard time every year with this span of time. Noah was not good at big days. It was a thing we agreed to mostly not have because he was excellent for 358 days per year. I couldn’t hold those particular failures against him. I used to go off and spend my birthday alone because I didn’t want to have to take care of anyone on that day. I also needed to move through the world in a set and a setting where of course no one said happy birthday. It’s a complicated thing.

Now I can’t go. I will go again someday. Not the now. I’m taking all of my time off from the kids to go have sex. I don’t have a very deep well to draw from in terms of child care for Shortie on a longer scale. Overnights are not small asks. It’s not worth it to me to be alone on my birthday this year. Also, my kids will be very nice to me. They will treat me how I treat them on their birthdays. They know no other way. They are excited that I won’t be gone. They haven’t spent that many of my birthdays with me because most of the ones they did involved me crying and I don’t like doing that to people. I don’t want to cry at them on my birthday. I have not had good birthdays, by and large. It is sad thinking that my birthdays are likely to improve with Noah gone. He really sucked at big days. No one else can deliver his intensity 358 days a year. They can manifest a handful of big days. It is weird sitting in my belly with how little that feels like it matters.

I would rather have shitty birthdays with Noah that great birthdays without him. What a terrible bind I have created. It doesn’t matter what I would prefer. I will get what I get. I don’t think they will all be great. I think I am going to spend my birthdays crying in my room now. I don’t think it is better.

My son writes fiction stories about people who endure terrible trauma and how they cope afterwards. People ask him if he has had a deeply traumatic life on a regular basis. He says that he didn’t have much of any significant trauma in his life, obviously now except his father dying suddenly. He says that he grew up with people who had were highly traumatised and he translates what he has seen to new characters. It’s a little creepy at times. He is writing translations of me and Noah. I can see it in the layers of complexity he puts into different perspectives. It’s never a blatant thing but if you understand the pattern you can see it super clearly. He’s a really good writer. I think he is going to be a much better writer than I am in the long run. That’s nice.

Even when I want to feel like there is no hope and everything is dreadful and I will never be fully accepted again I have to go have breakfast with these three people every day. It’s a fairly absurd claim. We are a massive mutual admiration society. We all have our areas to shine and we hand the spotlight around as much as possible. We are a fully fleshed out comedic/dramatic ensemble cast. It is fun to live with these people. No, we will never be a reality show. Ew.

We accept each other. We also understand that boundaries are great and everyone should be private about the things that family members would be happier not knowing about each other. We’ve been specific about what sorts of things go on that list. It’s not an ambiguous set up. When they were way the fuck too young to actually have such a thought about a given person we talked about how we can let them have personal space for privacy once they are adults who date. It is baked into the assumption of our household that someday most of the adult members of the house will probably have sex. Here’s how to do it politely.

It’s time to stop typing before I get more explicit on that topic because now it’s not my business to share more about that. I can face the day now. I can go do the thing that is my big success in life. I can kiss people awake and say I am so glad to see them again. They will believe me because I will mean it with my entire soul.

Yes, I do have their consent to talk about the stuff I do talk about. We have talked about the lines on a number of occasions and we will do so again. I don’t own their stories.

I like my housemates

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It’s blowing my mind that my oldest child is 12 days away from being an adult. This feels absolutely impossible and bizarre. Yet, here we are. My second child is 3 months away from being a quasi-adult in this country. (Scotland is strange. There are many ways in which you gain admittance to a softer version of being an adult: you vote (in some elections), can join the military, can leave school, and you can get married without permission. You may not buy a plastic picnic knife or a pair of scissors.) In our house one of the things that turning 16 gets you is that I no longer micromanage school/screen stuff. I go hands off and allow them to fuck with their schedule. I figure that making mistakes with running your body between 16 and 18 is one of the lowest stakes time in ones entire life. Might as well make as many as possible.

I feel like I have spent the last 18 years training housemates not raising children. They communicate so well, both of them. When one of my children is struggling with doing one of their chores they initiate a group conversation so we can re-divide chores. It’s miraculous and glorious. I feel so much pride I want to explode. MC (Middle Child) has figured out that they are happiest if they can do their contributions to the household when no one else is around. They clean the kitchen after everyone else goes to bed. They are now choosing to opt in to getting up early enough to make breakfast. These wrap around chores will make sleep slightly more of a specific issue but they want this combination because it produces the lowest amount of distraction while working.

It is really cool living with people who know who they are and what they want. I feel really proud of them. I watch them self advocate and I struggle with not crying. It never enters into their psyche that maybe they should just shut up and suffer. Their life hasn’t gone that way. When they are suffering they speak up about it and demand change. That said, we also talk through the things that must be endured because they cannot be changed DBT style. I love Dialectic Behavioural Therapy. It really works for me. The framing of it helps me a lot. I have been super active in teaching it specifically to the kids. There are things that must be endured: challenging developmental stages, security in airports, recovery from surgery. These things can’t be changed when you want to. Most things can be changed though and having the strength to make it happen is the obstacle. My children are so strong. That feels mystifying to me as they balance the contradiction of being very strong and also disabled.

MC had an adenoidectomy last week. They are really enjoying the way they can already breathe through their nose somewhat. It’s hard because they haven’t been capable in many years. I am overjoyed with the impending running schedule. They are going to be coming out with me several days a week and that thrills me. Up to age 24 is when you build all the fast twitch muscle mass you will ever have in your life. We have 8 years left to push hard together to make them stronger and capable for the whole rest of their life. That’s fun.

EC (Eldest Child) is frankly suffering a lot more. His body is crap and he is not getting a lot of help from the NHS. To be fair, I don’t know what they would be able to do for him. He eats in supportive ways. He does supportive work for his body. He is doing everything that someone with our alphabet soup of labels can do. He’s going to have a rough road. He’s going to lose a lot of time to feeling like crap and being unable to force his body through coordination. There is no avoiding this. So he takes on chores around the house that have a bit of wiggle room and he can do them in batches on days that he feels well.

YC (You are catching on with the naming convention, yes?–Youngest Child) is not so good at these things right now mostly because she has zero self initiatory drive absent an immediate reward and that’s a complicated thing. Her motivation isn’t present and I’m struggling with being consistent enough to make demands every day. It’s a negotiation and a production every day still and I’m really tired. It’s hard to be as consistent without Noah around filling in the gaps.

I miss Noah every single day. It’s not every hour at this point, that’s progress. It’s hard accepting all the ways I have less to give now because he is not the backstop. I commit to so much less than I did. I feel like my brain is constantly overwhelmed and I’m drowning in lists of things. Yes, I write them down. I still repeat them in my head because otherwise they will never happen. I feel like barely contained chaos at all times. Noah made order out of the chaos. I feel deeply helpless without him. I’m trying to learn that the maelstrom of words is not something that I can share in the same way. I will never be able to jump topics in a conversation the way I did with him again. No one else will ever have so much context for my thoughts. He could look at my face and know why I was crying. He knew which wrinkles in my face were for which layer of grief. It is hard the degree to which I will not be known going forward.

I don’t mean that no one will get to know me. They will do their best but I have a lot more history now and way less time to talk about it. What Noah and I had took so much time. I don’t have that kind of time to give anymore. It feels like I am not able to promise that depth and intimacy and I feel really mixed about that.

I feel lots of feelings at this point because poly is going to be complicated. I’m looking forward to it and also dreading it. I think that is a fairly normal set of feelings about poly. Poly is great! Also: poly is terrible! I really like my boyfriend. He feels like a really solid human. Our explorations together continue to deepen and broaden. I don’t currently have any idea what we are building towards. I don’t know what the limits of this relationship will be, exactly, yet. I don’t anticipate living together. For sure not any time soon. I am looking forward to when YC is older and I can sleep at his more often. He has a kitty who doesn’t appreciate being abandoned so he shouldn’t sleep here too often. We both have these anchors in our own spaces and that feels really comforting to me. He has been burned by relationship changes in the past. I like that we are both coming into this relationship with our own centres of gravity. (Also, if you are from the UK please give me spelling feedback. I’m trying to adapt but this shit is hard.)

I have started dating a nice woman I know in the queer community. It is still very early days and we can’t get together often. We’ve had two dates. We have not had sex. I feel like it’s going to take a while before I can be capable of having the kind of sex we are interested in having together. I have a lot of issues. My marriage involved a bunch of very conscious programming work that Noah did on my brain to try to change me. He wanted me to be monogamous. He wanted me to never top/dominate/hit someone ever again. He did a lot of hours of work on making it so that my body feels like it can’t access these urges I have. He wanted me to only need or want him. Now I can’t help but feel like I was right to refuse that.

I keep replaying in my head when he burst into tears saying that he was going to turn out to be only one of my great loves when I was absolutely the one big one for him. It feels like an indictment of my character.

The pain I feel right now because I couldn’t give him the single minded focus he needed so bad is part of why I feel like I should never live with someone again. My inability to have only one love hurts people and I don’t want to lead anyone on ever again.

It’s not that I spent my whole marriage cheating on Noah. I didn’t. He was always terrified of it though. He felt like I could at absolutely any moment and he never relaxed. He didn’t trust me. He didn’t believe I would keep choosing him. He was afraid that any amount of not looking at him would invalidate all of the time I spent looking at him.

He was suffocating me. I feel awful about this. I didn’t have the capacity to be satisfied from spending 20 hours a day with him. He was very stingy about how much time I was allowed to be out of the house. I didn’t want to leave. I did only want 10-12 hours a day with him. That hurt him. I couldn’t make that not hurt. For him that was overwhelmingly painful rejection. I talked about getting a crappy retail job to get out of the house and meet people and he was very upset. He could not accept me wanting to spend that much time away from the family. He would scornfully tell me that I would make so little money that it could not possibly justify being away from him. He missed the point.

I was trying as hard as I could to be ok in the small box he wanted me to live in. I wanted to be the wife he wanted. I am really sad I couldn’t be. I was going to keep beating my head against that wall forever. I’m sad that our journey together is over.

I am sad that my need to be alone and to have adventures with new people will continue to hurt people forever. I am selfish. I want myself. I want to be alone. I want to spend time in my brain. I want to form new understandings of humans and that means continuing to meet new people.

Another Kid is entering my life. I am really enjoying having intergenerational friendships with folks. I love that these young adults are drawn to me. I love getting to talk to them about what is going on in their lives. I’m trying to map them out in my brain.

I feel really lucky that these people come and seek me out. I don’t do that great in group situations at this point. I hang out on the outskirts of communities. I am not a central pillar of anything. I hide in my house and garden. These folks come to me and share their hearts and life stories. I rephrase what I hear to make sure I’m understanding properly. This process is a big deal. I don’t have to have solutions or answers to anything. What I do is properly listen and help them frame the topic. That’s enough. Having someone else understand and validate what is going on is already a big deal.

I feel like I should put more effort into friendships with folks my age but they all have kids and the schedule conflicts are impossible.

I have been spending more time with Jenny. That’s really good for my soul. Once again she is pulling me into dancing. Now we go to line dancing classes together. She has been good for me for over 30 years and I cannot overstate how grateful I am. She is such a good friend.

I am not reaching out to most Californians. I feel incapable. I feel overwhelmed. I feel like I am drowning. I am fully present in every moment and I don’t have the ability to reach backwards for all the old ties. I feel like I am barely stumbling through my days. I am so tired.

Today I have a whole bunch of time. I get to weed! This is the big thrill for me right now. Yeah, yeah, “No mow May”. I’m not mowing. I’m removing grass from growing areas. I don’t have the space for a meadow. Luckily my neighbour is letting the patch next to me run wild. I finally acknowledged to myself that I missed the window on starting seeds so I have bought some plant starts. I try not to do this. Oh well. It is what it is. Food will grow. Asparagus (not to be harvested this year of course), a variety of different Asian green vegetables, a bunch of salad green things, some peas, some brassicas. I need to chuck my potatoes in the ground today.

I won’t get everything done today that I “should”. I’m not capable of it. That’s feeling really hard. I should also try to get all the tax documents sent off to the accountant. That should have happened already. Fuck.

Also I want to read more. I want to sleep more. I need more rest. I also need to exercise more. DO EVERYTHING MORE ALL AT THE SAME TIME.

Deflated by feelings

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I feel weary in my bones. The last 7 days have been incredibly emotionally intense. I finally saw folks in the chronic pain clinic and it was a very positive appointment. I am on the road to finding the right specialists within the NHS for my particular issues. They are putting in a letter that cannabis is the most appropriate medication for me and this will allow me to pursue getting a prescription through the NHS. This is going to be incredibly helpful because I will be able to stop smoking and go back to capsules. This is great news.

The thing about living in the UK is that everything moves slowly. Getting good news means that in a few months or a year I might see an impact on my life being different. The speed is hard to live with at times. It’s like how Noah’s estate isn’t fully settled because the rules here have hundreds of years of precedent and they are picky about paperwork. It’s nearly done but it isn’t done yet.

Both of these things being in limbo for so long is feeling hard on my body. I feel tired and worn down from being anxious. I was on the chronic pain waiting list for about 5 years. The NHS is very slow but it gets to people. Middle child had their adenoidectomy after being on that waiting list for years. Recovery is a process. They are excited about being able to breathe. Eldest Child hit the top of the gender affirming care list a few weeks ago. They called to tell him that seeing him down in Glasgow in the clinic that used to do care for minors is pointless. He will switch to our local NHS waiting list at 18 and he will probably be at the top at that juncture. Local will be easier for a lot of reasons.

Living here requires learning a kind of patience that feels unreal in some moments. My American nervous system is not trained for this much freezing and waiting. I learned long ago to act, to fight, to do anything to make things change. Here that’s not a good approach. Here, being messy and active slows stuff down. It’s hard to integrate this knowledge in my body.

I’ve talked to my solicitor and a lot of doctors this week. Every single one has emphatically told me that I am managing freakishly well and they are impressed that I am keeping everything together. I think they aren’t seeing all the balls I drop. It was nice, in a way, that the receptionist at the dentist was very kind about saying she can understand why stuff is hard because Noah used to do so much to keep us all on track. She could see that just from us moving through the reception area for appointments.

I feel less competent than I used to. Noah isn’t here to patch over the cracks of my mistakes. I make so many mistakes.

I am really struggling with all the ways I feel bad and too much and sad. My emotions feel too big to share with anyone else. I don’t want to drown people. Noah wanted all of me. He could handle it. I don’t feel like it is ethical to share very much with people now. Tiny drips and no more. I am feeling like a tsunami of pain and if I let it impact anyone else there will be consequences.

There are always consequences for being me.

How funny. I can tell that my face is scrunching up when I cry just like my son’s does.

There is no doubt in my mind that if I didn’t have the kids I would be dead now. Noah promised me that he would let me die first so I didn’t have to be alone. I am alone in my brain now in a way I haven’t been since I was in my teens. By my early 20’s I had people around me who were opting in at full speed. I think there are people in my life now who would say they want to opt in to the fullness of my brain and I am not able to trust them. I have been left too many times. I’m afraid to need anyone. Everyone goes away. I’m not fully alone. I spend time with my Jenny. I have made some really nice friends here and they care about me a lot. They show up. My boyfriend is a great guy. And still there is so much of me that I could only share with Noah. I miss Noah. I miss being good enough even when I sucked.

I hate that I feel no resilience. A very soft amount of correction feels like evidence that I don’t deserve to be alive or have relationships. I can’t react in a proportionate way and I hate this. I hate feeling like even the smallest amount of frown invalidates me existing. This is what Noah gave me. I annoyed the shit out of him. He corrected me harshly and I could handle that because I knew that nothing I ever did would be bad enough for him to leave me. Back I go into feeling like I don’t belong anywhere or to anyone. Being necessary for the kids is different.

It’s good! Don’t get me wrong. I am really grateful that I have positive, uplifting experiences with the kids every day. We get along. We are well suited to each other. We have a peaceful, loving coexistence. This feels possible mostly because I keep most of me in a box off-stage.

I am not sure I will ever feel seen again. I miss Noah. I miss the way he clutched me like I was his security object. I miss feeling like I was the reason someone felt whole. Instead I am back to being someone who makes people feel awkward and uncomfortable. I don’t like being me. I want to be someone who was born good enough to love. I have to work like a dog around the clock to earn my right to keep breathing.

I am really tired. I slept ok last night. This is exhaustion at the soul level. It is so hard going on without Noah. He needed me. He needed me so much that all by himself he justified my existence. Without him I feel like a burden the world doesn’t need. I know that my kids need me for a while longer, but I am afraid of their complete independence. I am afraid that I will see all the signs that I trained them to not need me as reasons I should go. The point of being a mother is to raise people who will be fine without you. If you don’t do that, you haven’t been a good mother. You can’t train apprentice adults to be dependent. They need to be able to survive my death.

I am struggling right now. I will get through it. I always do. Right now it hurts.

Old shit and new shit

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It’s been on my mind a lot lately how much Noah resented me having a lot of friends in the kink community. He acted like them liking me meant he wasn’t really part of the group. He did have his own friends who came to kink events, but he considered them more “visitors” to kink from computerland. He thought of himself and his friends as weekend warriors who “didn’t really count” in the eyes of the Leather people. He wasn’t all wrong.

He didn’t want to put the time in to go sit at munches or go to parties without any hope of play. For him if there was no payoff there wasn’t a point. Then he resented that I had so many friends. He resented that I had so many opportunities to play when he didn’t.

I practically lived at scene events for 5 years. I was at scene events at least 4 days a week and often 7. These events would last anywhere from 2 hours to all weekend. I was spending probably a minimum of 15 hours a week at scene events. Then there were the immersive conferences I went to many times a year that lasted 3 or 4 year. Even more rarely (but ever more precious) were the ones that lasted 7 days.

Of course I had friends in the scene.

If you assume 15 hours a week (totally ignoring conferences) and giving me two weeks off a year for illness, that is 750 hours a year. Given that a weekend event would add at least 50 hours to that and I went to several most years I hit at least 1,000 hours a year at scene events for 5 years running.

No fucking shit I made a lot of friends. That’s not including the time I spent with friends. I was one of those assholes who “only knows scene people” for a few years. I was grateful my vanilla friends forgave me for being a neglectful asshole for a while after I came back. I made a lot of them take minor walks on the wild side and they learned that they were not kinky. Oh well. At least they can say for sure that they didn’t like being tied up all that much. I have some very funny pictures that are on paper and will never be on the internet. I like that. In the old days, privacy was a much easier thing.

Some things are great to remember forever. Some things should be forgotten because they were only meant to live for a moment in a very small container.

I do really wonder about sending my buddy one of the pictures of him tied up and suspended. He is very very very very Catholic with his 7? 8? children. I wonder how old man him would feel about our youthful games. It was good clean fun. Sure, it was sex but it was the kind where everyone stays fully dressed and nobody touches any junk.

It was wholesome, damn it!

I could send other pictures to the dear old friend in Utah doing his best to expand the tolerance level of the Mormon church. He believes God brought me into his life and his heart for a reason. He is militant about advocating for people like me.

A long time ago I was learning and exploring and I was brand new. I didn’t feel responsible for the outcome.

Now I feel really shitty that I bumped into someone at the munch repeatedly in a playful way without ever having a conversation about such things first. I am grateful that he has accepted my apology but I’m too fucking old for this shit.

I feel this overwhelming responsibility to do it “right” all the time and I don’t.

I am having a hard time with the amount of personal space awareness the kink scene requires. I have fucked up several times since I came to Scotland and I am really upset with myself for being so messy about these things. They are small mistake size but there have been a couple and I don’t like it. I am not reticent enough. I am not contained enough.

I struggle, often, with how reticent and wary to act folks are locally. I have the polar opposite problem. I am overly comfortable with the idea of acting. I am the exact kind of asshole who, when someone is passing, will bump into them and say “oops” a couple of times. I don’t do it hard. I don’t try to hurt anyone. I’m playing. But I don’t have the right to be familiar with anyone’s body.

Noah wanted me away from my friends and he got his wish. I have very little time in a room with anyone here. Even the people I’ve spent the most time with I’m still awkward and I feel like I don’t understand the boundaries. I sometimes wonder if Bestie and I like to dance together so much because that is the only way we can manage to be in that kind of proximity to each other. We aren’t snuggly at all. I touch my kids. Gentleman and I have sex.

Noah touched me for hours and hours and hours every day.

I feel desperate for kinesthetic, tactile relationships. Being sober is the fucking worst. I don’t feel sexy and I’m not going to initiate sex. If I look anything other than horny he doesn’t initiate.

My body aches with the desire to be in contact with humans.

It is feeling a little rocky as I start adding stuff back into my life because I desperately need more fucking contact than I am having. Most of the time I’m filling is kid-stuff adjacent so it means very minimal physical contact and only that initiated by short people.

It is the size and shape of life I was allowed to have with Noah. He allowed me to have more than a full time job worth of socialising while he was working because I could justify pretty much all of it for the kids. It is literally my fucking job to socialise these children. That was well done of me to get my whole life set up around filling my particular needs.

As it gets warmer I keep thinking about the fact that I have about 5 months to go until It’s 2 years out from the rape. The last year and a half have been brutal on my sense of community. I am so lonely. I don’t get out enough. We don’t get out enough. Home educating is harder here. The community is spread out so far it’s a real problem since I don’t drive.

Building community here is a much harder path than it was in California. The population density is small. Also: I used to drive. This whole fucking process is a fucking nightmare sometimes. I choose this. I can’t go back, not for a million reasons. This is where I have to bloom. Maybe it’ll be ok. This country does glorify the thistle.

I’m not going to be able to get to scene events very often and when I go I am going to want to be fully present with the people in the room. I’m not going so that I can have a place to do public scenes with my partner. I mean, yes, that’s on the list of things I’m happy to do. It’s not The reason.

I’m having to think about this really hard because both Gentleman and Pretty Lady are making comments about wanting to be part of this. That’s fucking complicated. Because when I go to a party I want to see the people I don’t get to see all the rest of the time. I don’t go to a party to be watched. I go to meet people and talk and play with new people. I need to build a bigger friends network in this country. I need it. I am not saturated in terms of relationships. Nothing of the sort. I don’t know how much more serious dating I have space for at this point. Definitely not with anyone outside the radius.

My life is constrained. I want to get to know people who live on the coasts, and Borders, and central belt. (I am honestly not sure how I should be capitalising that sentence. Feedback? I go back and forth on whether Central Belt should be capitalised. I think “Borders” is a specific region and thus a proper noun? I’m trying to guess based on how people speak and I’m forking confused.) I only have chances to see those people at parties. Like, I’m not going to spend the whole time hanging out with my Kids either.

Mama is going to play. If I can. If not, I want to make new friends. It is less important to me that I find play all the time. I must feel the freedom to be able to get into a really deep, meaningful conversation with someone without checking my watch.

I am tetchy as all fuck about this. I’m being defensive when I don’t have to be. Maybe this is a bad month for a tolerance break. I am going to have to have a lot of control over my tone of voice in ways I’m not doing great at today. My kids don’t tell me to use this medication because I am easy to live with without it. “With your medication you are a very happy mama. Without your medication you are rather a fucking bitch. Go take your medication.” Direct quote.

I feel bad about that.

I don’t know how my relationship with Gentleman is going to survive a tolerance break. Maybe this month is not a good idea. We are going to have to talk through me going to a party on my own and going to a party with him. Maybe I am going to need an amount of control I just literally don’t have available while sober. My choice is not speaking at all because no, I am not going to be able to say it as nice as you need me to. I can’t. I literally fucking can’t. This is why I take medication. So that I fucking can.

Drug dependence is fucking real. But the thing is, I have all these issues without the medication. I’ve had problems my whole damn life. On the medication I am a moderately functional human being.

I remember when I went on the road trip I got into an argument with my Utah pal’s mother in law. She was taking something like 18 different medications. We talked about them a great deal. I went through the research on cannabis and how using it would probably knock her down to 1 or 2 pills. She said, “No. It’s illegal because it’s bad for you. Nothing about it could ever work or be useful.” The conversation went on for a while. She said a lot of things. I found it really amusing. We make ourselves believe so many things.

Literally 8 fucking doctors all signed on that cannabis is the most useful medication that exists for me and I should use it for the rest of my life. That included a fucking pediatrician and ob/gyn who worked with me through multiple pregnancies and I breast fed for 7 fucking years. That’s not good enough for this country though. I have to wait through the waiting lists then get rejected by the NHS for multiple kinds of treatment having no effect before I can get capsules here.

Life does not give a flying fuck about anyone. These things are silly.

I’m feeling oppressed and pieces of it are mildly reasonable even if they aren’t personal.

I feel exhausted to my soul.

One day of break. I don’t think this is the month. I think that’s going to go poorly. I don’t think I have that resolve to give. I think I will be too snippy and bitchy. I don’t think I have enough relationship capital in this relationship to be allowed to have a bad mood. That’s good to know. It is very important for me to respect the limits of a container. When I understand what caliber of self is required I can select the timing of my performance and make sure I don’t exceed my limits.

Noah and I took turns taking tolerance breaks and being grouchy shitheads. We knew to sigh deeply and ignore each other for a while. It will pass. Every feeling passes.

I don’t think I have space in my life for volatility right now. I don’t think that self is acceptable. That’s a hard thing for a bunch of reasons. Physically I do need the break. I don’t do them for fun.

I think this is one of those times when I have to pick what kind of selfish I am going to be. I can either be sexually selfish or I can be selfish about being moody. I don’t think I get to have both right now.

I think I’m getting close to 15 people with whom I’ve had enough conversations to fill more than 24 in person hours of friendship. That’s 6.5 years in.

I’m not popular here. I have an asshole telling people wild stories about me and my dead husband. I’m kind of an abrasive bitch and I’ve already had a messy falling out with one dude and that’s not great. Someone dislikes me for very good cause. I was far too aggressive in questioning them about a rapist. I was really selfish and it was wrong.

No, I don’t have a bunch of fucking friends right now. Well, I do, but my friends are mostly thousands of miles away. I don’t have a community here that I have built with time and shared connection. I have a bunch of strangers and a lot of hope. I have a desperate need for the kind of communion I have found with Leather people.

It’s not the same here, but it’s close enough. I’ll accept kinksters instead of Leather. I’m not snobby.

Now I have more like 12 hours in this month where I get to be around kinky people. Last month, because of the house party, it was like 72 hours of being around kinky people. Most months 10 or 12 hours.

I do not feel like this is all happening super fast. This feels glacial to me. I’m not going to have a lot of time in public kinky gatherings. I am going to talk to people and get to know everyone I can. Even the ones you don’t like. Even the ones I end up not liking. I still want to meet them all. This is a fucking small pond and I want to know who is in the ecosystem.

Why?

Because that makes me feel like a whole person. I don’t want to tell you what to do or boss you or decide who is good or bad or moral or ethical. I want to feel like there are a lot of people who are going to need to come together for my funeral. I want to be part of a lot of stories. I need it. I won’t be a main character for them, don’t be silly. I will be a recurring walk on with a scenery chewing personality. You can’t keep me around too much because I will steal the show. I shove people into building their own lives as hard as I can.

I can’t help being loud and sometimes difficult. I can make sure that people don’t have to put up with me when I am feeling like that. There are reasons I wanted a detached house so no one has to hear how obnoxiously loud and American we are.

I am feeling intensely harsh and imperfect. Feelings. Feelings I can’t word. Feelings that I would regret wording.

There is no fair to the fact that I am still over reacting to the repression Noah enforced. It’s not nice for Gentleman that I’ve had a lot of years of the same damn argument and I react like it’s the thousandth time instead of the sixth.

I think one of the big differences in my mind is that kink is for individuals more than couples. It’s not like swinging where there is the priority on enforcing the outside dyad dynamic. There are couples who are intensely together and monogamous entirely who are active in the kink community. That’s a fine and dandy thing. Most people are at least play poly even if they are otherwise monogamous. We come to make friends and share time exploring a mind bending hobby. It’s better than drugs.

My order of safer sex supplies arrived. I had been missing a few things. This is good. I sincerely doubt any of them will get used this weekend. I would put it below a 5% chance. It’s not a sex party. I like serendipity though. Chance favours the prepared mind. Those who fail to plan, plan to fail. Or plan to get cock/cunt blocked by their own stupidity and laziness.

Realistically I’m going to be lucky if I can get past feeling anxious as fuck and even talk to people much. I am opening a door Noah didn’t want opened. This feels existentially terrifying and hard and painful.

The thing is, I’m on the other side. I want to be fully me again and I am feeling inhibited. I am feeling like it isn’t ok.

The fun thing is, I won’t be going as a piece of meat. I’m too old and picky and bitchy for that shit. I’m a bitch who expects people to jump over hurdles for me. I can’t expect to find that at a random party. One can always maintain hope though. There are a lot of ways I can think that through to find some fun.

It all depends on who is in the room and I don’t know yet. I don’t know if I might as well rock up in my stretchy leggings and a prairie dress because comfort is over fashion while I’m chatting and getting no action. I’ll dress up if I have to. I am very lazy though. I like being comfortable so I’m not sure the kind of dressing up I’m up for will even count these days. I’m old and in pain and I don’t give a shit if I look like a fetish model.

If I run a lot more and maybe uhhh cut back a tiny bit on the cake I might be able to fake that shit for a couple of nights. I have some really cool leather dresses. Amusingly, Noah bought them both. He never wanted to go anywhere with me where I could wear them. That was always so strange to me. He knew that wearing these made me feel like a fancy bitch. He thought that owning them was the same as wearing them. He was so smart and also really stupid.

This is one of the things I am going to have to get used to and react like a grown up. I will never have a Daddy again. Daddy’s have to tolerate their children being moody and petulant sometimes. It’s part of the deal. I don’t have a Daddy anymore. I should be in bed. This is when Noah had an alarm. He’d come and get me and give me a stern look.

He took care of me in so many ways. He made me believe that I was worth an awful lot of effort and then he left me alone.

I think solo poly is awesome because I can appreciate a relationship without needing to be upset about all the things a relationship is not. In my home I will always be safe to have all the feelings without having to constrain them to what people want them to be. Come over when you can handle me. Go home when you are done with my bullshit for the day. It seems quite reasonable to me.

Oh shitballs.

Tonight has been a lot of screaming and sobbing. I don’t think I can do a month off right now. It doesn’t matter how much I hate this cough. No, I don’t have better options. Don’t bring them up. You can’t fix everyone’s situation. Your resources are different. We all have to figure out our own shit and it fucking sucks.

I am so tired of curling inward with shame because existing as what I am hurt Noah so much. I did. That’s a fact. I also made him beam with love and go out and do really cool things with his life because he wanted to fund our adventures as a family. He wanted to support us doing cool shit.

He’s gone now. I don’t expect anyone to be patient with my bullshit. When I am given grace it is a gift. I need to work very hard to make fewer mistakes. I need to practice more. It’s really hard finding the time. Typing at people doesn’t actually count, not really. Not for what I need.

I need to know which people in the room I can walk up to with great enthusiasm and throw myself at them because they enjoy that kind of thing. I need to know which people I should smile and wave at, maybe we will chat a little while snacking. I need to know who is going to light up when they see me.

I won’t find out if I am looking at the floor and bouncing my eyes. I hate that I feel like I am fighting against intense pressure. Oh wait, there were literal hundreds of hours of hypnosis about this topic. I’m not supposed to do this.

I’m going to have some feelings as I do it. It’s going to be fucking gnarly. I will be torn between crying and grinning like my life depends on it. Like I will get hit if I don’t.

I don’t believe anyone in this environment would strike me if I had resting bitch face. This is not rational. I am fully aware, thank you very much. The thing is, what I need is to be a positive force for folks. I have to show up when I can show up.

I have seen a lot of people live life to the fullest and I have seen a lot of people squander their precious time. The older I get the more blessed I feel that I had to move so many times. It’s funny how I don’t want to give that to my kids. It was a trauma, sure, but it gave me insights into the similarities of humans that not everyone sees.

I want all of you. Even the ones I don’t like. I need you. I need you to need me too. That means I need to show up and be open to serendipity.

I have to go meaning to say “yes”.

Another morning, still no hope

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I am angry that I was summoned to the NHS psych department today. I was summoned so I could be told in detail that this tragedy still doesn’t qualify me for support because I am stupid enough to prosecute a rape. This country is barbaric. But, no guns! Homeless people are given housing! They have basic (shitty) health care without going bankrupt! They have lots of water and are not vulnerable to fires, earthquakes, tornadoes, or tsunamis.

Nowhere is all good. I really miss the California therapy culture but as I watch the state go up in flames again I worry a lot that there will not be capacity for supporting all the pain that exists there. I feel lost in my grief. I feel like I am a horrible bitch because I don’t know how to feel love and support from the people who are showing up. I’m going through the motions. I know the role I am supposed to play. I feel empty though. I feel like I will never feel positive emotions again.

I am so scared. I don’t want to talk to the NHS today. It will be degrading and awful. Oh shit, I should call about flowers. Fuck.

Too many feelings.

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I am feeling a lot of pain and isolation. I am struggling with how paranoid I feel. I make the assumption every time I leave my house that someone is going to be hostile or nasty. I get a surprising amount of random verbal abuse. Other people hear it–I am not delusional or paranoid.

I started 2024 with so much hope. I had big plans for working hard and contributing to communities. In the end I am isolated, lonely, and I feel deeply excluded. I feel wounded to my core by being asked to stop coming to cycling events. That was the vanilla community I invested in the most since moving. Now I feel like I am dirty and bad and I hurt people by existing near them.

I’m sorry I made you feel like a bad mother because I was willing to defend your gay kid and you weren’t. That wasn’t my intent. You weren’t in my thoughts at all. Your kid was. And that means I’m not welcome anymore.

I’m scared of the queer community now. The fact that basically no one from the organisation committee is checking on me feels fucking vile. I was raped on the final night of a month long spree of events where I personally produced 28 events. (Some cancelled due to illness so I didn’t hit 30.) That feels like evidence that I did not make any friends this Pride.

The NHS told me that I’ve already gotten so much therapy that I shouldn’t need anymore and if I do I can’t apply until I still have symptoms months after the trial. Fuck if it doesn’t seem like the *plan* is to avoid prosecuting rape/sexual assault cases by being so unsupportive the victims commit suicide. From where I’m sitting that looks like THE PLAN. It’s a lot cheaper that way

Noah fell and broke his ankle. He needed surgery. It was a little bit stressful figuring out when the surgery would happen. The NHS really does act like people are just waiting around at liberty to jump whenever they are called. It’s quite different to interact with.

I feel increasingly certain that I made the right decision in cutting things off with Travel Boyfriend. He was not acting like my friend. I feel less anxious. I feel less like I am supposed to be trying harder to win approval. Instead I am back to exhausted lethargy. Anxiety is a motivating emotion. I don’t want to be running on anxiety all the time though. I’d like to actually feel ok.

I know that EMDR would help a lot. I feel deeply upset that I was told no and that I can wait for years. It makes me feel substantially more out of control, helpless, and like I don’t get to be in control of my body.

I wish I felt like I had energy. I have a lot of things I want to do but no ability to focus my body or my brain. I’m in a lot of pain. I feel overwhelmed waiting for things to land on my head. I feel sad and scared and vulnerable and angry. I hate that I can’t be around people without crying.

I hate being me. I don’t want to walk this road. I don’t want to have to manage these trials and tribulations even though I do have so many wonderful aspects to my life.

I know I am lucky. I know I have a good life. It is hard to feel like I should be in it. I feel wrong from the core of me. I work hard on hiding it but it’s a mixed bag. I wish I could like me the way I like other people.

Noah is at the hospital and I miss him. As much as I think I will be stupid enough to want to sleep with someone else one day I think it is insane that I want to be away from Noah at all. He is the sun I orbit around. When he isn’t here I don’t know what to do. If I don’t have Noah to take care of–what am I even good for? Hell, the kids don’t even need me for cooking anymore. They are all shockingly competent.

I am so glad for Noah. I should go to bed. I’m going to the walk to the hospital in the morning and fetch him home in a taxi. Then I’ll get to baby him for a few weeks. I’m looking forward to having a holiday with him alone. It will be our first time having more than 48 hours alone since before Eldest Child was born. Little twerp is closing in on 17. That’s a lot of years of not having time alone.

I think we’ll manage to have fun even with limitations. Noah is fantastic to be with. I’m glad we get to do this. It is a silver lining on a whole bunch of negotiation that lead to nothing.

Letter from the NHS

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I’m copying this shit because it’s so fucking epic.

I’m writing to you as (deleted), Consultant Psychiatrist, referred you to Psychological Services. As you are currently engaged in counseling with Connecting Carers and are due to continue this through RASASH, we are not able to offer you assessment or therapy within our service. I would agree that RASASH would be the most appropriate form of intervention at this time to address your current difficulties and circumstances. As you have previously engaged in extensive psychological therapy I would hope that once this acute period of distress has settled, and with input from RASASH, that you feel more able to implement the learning and coping skills from previous therapies.

Connecting Carers and RASASH offered me someone to sit in the room with me while I cry. They said they would give me tea and cake. They are community support workers, not therapists.

Well. I don’t think I will bother asking for mental health support in this country again. I am saving this letter. If I ever commit suicide I am using the back of this letter for my note.

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.

The more I learn about mental health care in the UK

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The more I believe I will probably be on my own for figuring out my shit going forward. I am eligible for supportive counseling, which is not therapy. Before the trial it is unclear as to whether or not I can or should have any kind of therapy and in any case my notes have to be shared with the defense team. So uhhh, no I guess I don’t need therapy.

I’m in that rough spot where I would benefit from being able to talk about the ways my mental health is not going well. I can’t say more to Noah though because too much of it feels like I am threatening him. I need to just not talk about it at all. I’m feeling a lot of feelings about this. I don’t want to dump on my friends so most of what I am saying about my mental health is that it is not great. I don’t have anyone I feel comfortable talking to.

I don’t have a single person I’m willing to freely talk with about what I am thinking. I feel like every thought in my head is proof of why I deserve more punishment. Why I should allow my life to be smaller and smaller. Why I should shut up forever.

Between the fact that everything I say can be used against me in court and the fact that everything I say upsets the people I live with it feels like I should stop speaking entirely. I will be punished if I don’t.

It’s not that I dislike him

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I like Noah very much. What I don’t like is how I feel. What I don’t like is feeling like I need to spend the rest of my life hiding from people due to his overwhelming insecurity.

I don’t hate the life I have created. I don’t want to be out of it. It’s just small and getting smaller and I don’t have any sign of permission for growth any year soon here. I don’t know that I will be allowed to do much of anything involving other people after the indenture. I mean, I can do research and I can write books. It’s not that I can’t have interactions with people at all. I could support Noah in socialising with his people, as long as I bounced my eyes carefully and was careful not to become too friendly with anyone.

I need to stop looking for support. I need to stop looking for people who will invest in me. I get what I get from Noah and the rest I need to just come up with on my own.

I’m really scared that I’m not enough.

I no longer believe that I get to throw myself back on the net that I have created. It’s not ok.

When I think about where else to sleep, one of the obvious options is the pull out couch in the studio. Only that’s where it happened.

I feel very sad and very scared and very alone. I feel like my childhood never ended. I feel like I am waiting to be made to leave. I know I won’t be, but that’s what this feels like. It’s why I isolate as much as I do. My brain expects and needs that as the result of how I am feeling right now. When this happens I have to go away. Because I am so bad that no one can endure me.

I am going to need to request more sleep medication soon. I’m going through it much faster than usual and I am scared they are going to tell me no. I am afraid they are going to tell me that unless I can be compliant with how they want me to be fixed I deserve nothing at all–not the medication I got to after years of experimenting and sleep tests and evaluations of other ways of managing my extreme PTSD symptoms.

For the love of Cheese, please let me sleep. Mostly I don’t need help very often; it’s not bad most of the time. I’m not ok right now and I need this help and it’s the only thing I’m still getting that they might question. I even fired the counselor I liked so they can’t say I’m getting help already outside the system.

I bet I am going to get in trouble for that. I’ll be told that I don’t care about getting well so I don’t deserve the medication that has been a steady source of appropriate and non-escalating usage for over 10 years.

I really don’t like being me.

I hate being depressed

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I am angry. I am irritable. I don’t want to move. I feel only anger and fury and dislike for my children. I’m not feeling motivated to eat. I’m sleeping absurd amounts but not feeling even vaguely rested. The NHS page on depression is so belittling that I’d like to learn how to launch a DDOS attack and bring down the NHS website because I’m so fucking angry that I’m being told I should maybe talk to someone, eat healthy food, and exercise.

Here the treatment for depression is: nothing! Surely it will go away. Wait, it didn’t go away? Fine, then let’s give you a fucking self help book and you can go home and fix it without bothering us. You do a workbook on your own and a therapist checks up to make sure you did your homework. They might send me to a group exercise class since I can’t figure out how to exercise on my own. Bonus points for it being a kind of exercise that will cause me injury and then they can tell me that I don’t care about my mental health again. Then eventually if all that fails (which it will in 99% of fucking cases, but let’s abusively shove everyone through the process because EVIDENCE BASED MEDICINE) we will let you talk to a therapist many months of suffering later. When you talk to that therapist you will be told to go on an SSRI. You will get some cognitive behaviour therapy bullshit. CBT is widely considered to be gaslighting and wildly abusive. It is *the* form of therapy offered on the NHS. If I’m severe enough they might consider letting me have abusive CBT *while* I’m being forced on a drug that is going to make my life a living hell.

I want fucking EMDR.

Here they max out at 16 sessions for any kind of treatment. This is why I am considered treatment resistant because in 16 weeks a therapist has barely learned the shape of my problems.

Amusingly, the nerve pain medication I’m on–Amitriptyline–is their second line “I can’t take SSRIs” option. So I’m already on that antidepressant and I have been for years.

EMDR is not even on their list of possible treatments for depression. They won’t let me have it at all. I feel so angry that I am going to have to fight this hard for a non-invasive, non-drug form of help. That seems really broken to me. I want the least expensive option. I don’t want talk therapy for the rest of my life and 16 sessions is fucking stupidly a waste of time and resources. I am not a 16 session patient.

I feel sick and bad and useless and stupid and like I should die. I don’t want to snuggle and I feel like I am going to throw this fucking cat across the house if she doesn’t stop scratching me to ask me to pet her. (I haven’t thrown her.)

I feel like I don’t know how to stop roiling in rage and pain. Everything in my brain is saying that I am a piece of shit who should die. I don’t do anything that is good in the world. I am only bad. I feel guilty for backing out of the date with TB and also like I might cause serious damage to a long term friendship if I go and I flip out at him because I’m completely dysregulated. That’s not fair.

He dodged a bullet. Lucky him. He was smart to opt out of being a bigger part of my life. I’m really not worth it. And I think he was the one shot I’m going to take. He was barely passive and accepting and supportive enough of my marriage for Noah and no one else is ever going to care even 10% as much as he does about preserving my marriage. He’s a really good friend and I am lucky to know him. I wish I felt like there was any good luck for him in knowing me. I feel like a punishment and a curse.

I should be getting ready to bike over to go rock climbing. It’s hard to move at all. I want to lie on the floor in the fetal position for the whole day.

I want to fade away entirely.

It’s weird

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I like dropping bits from my brain like leaves on the stream of data that is the internet. It feels very alienating when I stop myself. I feel my personality, my sense of self constrict. If I am not sharing thoughts, did I have them? I need to be witnessed in a way that is awful and overwhelming and makes me feel empty. In it I see the way my children yell, “Look at me!”

Do we all want that so much it feels like a burning knife in our bellies?

I finally did something today. I cleaned the kitchen. It was pretty gross. Well, I cleaned most of the kitchen. As much as I could make myself do. I feel in myself this urge to go through and whip the house and garden into shape for the winter–it would take me 3-4 days of solid work if I felt whole enough to do it. Instead I think most of it won’t happen at all and I will stare at walls and wait to die instead.

Nothing expeditious will happen. I’ll just wait. Death is coming for us all. Every day we are always waiting for death. This is a morbid thing more than a suicidal thing. I am feeling morbidly obsessed with death. I feel like I can think about very little else and that’s really annoying.

I was listening to my “hope” playlist earlier trying to have some feeling in my body that isn’t negative and pessimistic and despairing. Fat fucking fail. I can’t.

I cuddled my baby and talked about how she is doing the best she can and no her mistakes do not mean that she is naughty. Sometimes she does do stuff that we aren’t very happy about. She isn’t trying to be mean. She isn’t trying to hurt anyone. She isn’t trying to destroy anything so no, she is not bad.

Why can’t I feel like that applies to me at all?

I’m freaking out about how much I want to see my mom and Auntie. I think I actually want to stop going back to California because I don’t want to feel like I could see them. I can’t. I have no idea how they would feel about seeing me. It’s been almost 14 years. It still hurts like a stab to the heart every single time.

Mama says I could leave Noah and move in with her if he is hurting me beyond what I can bear. I don’t think he is. Also: how in the fuck could I handle moving back to Santa Cruz? Drive past Auntie’s house every time I go to the Valley? Nah. Nah I can’t do that. I can’t. That’s a bridge too far. I really can’t.

Hell, I can’t go back to driving. Moving back to California is a non-starter.

Besides the fact that I don’t want away from Noah. That is the scariest thought. I am so much more afraid of losing Noah than I am of dying. I need Noah for what he gives me spiritually. Noah is the rock around which my life is built. I do not know what I would do without Noah. My life is built around serving Noah and that’s not something I feel motivated to change.

I would not be happier as a slutty single mom. I would probably turn into my mother and never have sex again because I don’t trust anyone. I would be terrified that I would expose my kids to a predator because I have famously shitty taste in people to trust. I like monstrous predators. Apparently. Or they like me. Or something.

I would not leave Noah. This is a hard phase. I’m not going to leave because he delivered on the “worse” he said he would give me during the vows. I knew it was coming. It was foretold and promised and everything. He’s hurting and not being gentle with it.

Noah tells a sad, pretty story about an orphan boy and his escaped, wounded rhinoceros. We trade back and forth who is the boy and who is the rhinoceros. I don’t expect him to always be gentle. I don’t know what I do expect. I don’t know what would be better. I have no idea what I would ask for. Right this exact minute I can’t imagine ever feeling happiness or joy again.

Right this minute I feel like I should cancel with Travel Boyfriend. There’s no way that I could deliver on the good time some other self who used to live inside me offered. That self is gone. She feels dead. She thought maybe it might be ok to really grow and change but no. I need to calcify and chip off edges. Right now it feels like she was the part of me who wanted to recover from being raped. You know what? Fuck the NHS. Medical malpractice my big toe. You are lazy and ineffective motherfuckers. I know it saves you fucking money. And it HELPS YOU CUT OFF THE EDGE OF THE BELL CURVE YOU MOTHERFUCKERS.

I feel sick and depleted and destroyed. My head hurts. My soul hurts. I hate doctors so much. This entire experience is so degrading.

How would I even be able to tell if I was so upset about Noah? How could I narrow down the sources of stress and distress? Do you know who supplies all of my support? Noah. Leaving Noah would be a form of self harm for me. Noah takes care of me through a great many times and types of incapacity. It’s not even just that he physically cares for me when I’m ill–he cares about my soul. He puts a lot of time and effort into trying to help me be ok. That’s one of the many things I’m really sad about.

Right now I’m not feeling better even though Noah is putting a lot of effort in. That feels like yet another betrayal. It feels like improperly displaying gratitude. That old chestnut.

I need to go to sleep.

I keep coming back to this deep unhappiness. I can’t perform good right.

Do I really deserve to be alive? Or am I far enough out on the bell curve that I really should have died already.

Harsh

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I’m not screaming and frantically wanting to hurt myself. I do feel harsh and angry and sick of being flexible. I feel like I cannot keep jumping through hoops to try and be good when there is no good that is good enough to not keep getting yelled at.

Parenting is a shitty gig in a lot of ways. Kids are feral creatures doing their best and you can’t regulate off of them. It’s not ok. There are predictable stages that are frustrating in their own special ways. It’s not that the kids are being extra hard. I just have so much less to give than usual. I feel depleted and diminished.

I’m really struggling with what it means to get help in this country. I am told I can’t get support from more than one person at a time… until suddenly I am told that if I wait to get help from different services one at a time I am told that I am declining help from one of the services and they won’t help me later if I turn down this offer. I’m deeply confused and overwhelmed. I feel like I’ve been threatened repeatedly by NHS doctors that if I am not properly compliant I will be barred from basic medical care from the NHS. I feel scared. I feel fucked over and abused.

Seeing more than one therapist is medical malpractice… until it isn’t and refusing the second person who is offering assistance means I am not compliant and I don’t deserve future help. I felt like I was going to get help from the ADHD prescribing lady until I talked to her boss and now I feel more hopeless, helpless, scared, and vulnerable than I did before.

I feel like I’m about to be barred from medical care because I can’t perform patient properly.

As we have just hemorrhaged money to be able to live in this country permanently, I’m feeling very scared that I will be unable to access the normal medical treatment that citizens get here because I don’t know how to be good enough. I feel deeply abused that this is getting so much worse because I was foolish enough to report a crime. I feel punished. I feel sick to my stomach every time I think about having to deal with the doctors here.

When I think of that insulting lecture about how people don’t get better because the glacial pace of the NHS is deeply painful and they don’t continue to come back for inadequate, inappropriate care. I can literally tell these people that I have paid for tests that reveal that genetically a drug won’t work for me and they tell me I have to take it anyway or I am being uncooperative and I am not interested in my own mental health.

I am fucking livid.

Mama was asking me if most of my feeling bad-ness is coming from Noah and the way he is melting down. No, he’s not helping overall at the moment but he’s not the reason I feel as bad as I do–certainly not on his own. I do feel really bad that he thinks I betrayed him but he’s entitled to evaluate my behaviour in any way he sees fit.

I mean, 2016. I will never be done being yelled at for my craven and disgusting behaviour. I can’t describe myself in mean enough words to convince Noah that I am sorry. I can’t debase myself enough to satisfy his feeling of being wounded. I don’t think he will ever forgive me.

I feel absolutely overwhelming like the next time I am raped I need to die. I cannot survive any more of this. I can’t. People are so fucking mean about me surviving. I can’t keep doing it. If I were a good person I wouldn’t be able to keep going through so much evil. The fact that I keep walking is part of why I deserve every punishment and insult. If I were a good person I would have been destroyed. I am a monster and I deserve every scrap of bad I receive in this life. The only thing I could do for the smallest ounce of redemption is to just fucking die already.

It doesn’t matter though. I have 11 years, 3 months and 19 days on my indenture. I am not allowed to die. I have to, in fact, work really really hard night and day to stay alive. I have to be careful about every fucking aspect of my life if I am not going to die in my 50’s. Between my 4 grandparents and 2 parents there were 2 suicides preventing folks from hitting their 50’s, and 2 folks who died because they wouldn’t take care of their bodies, and 2 motherfuckers who are too god damn mean to die–my grandfather made it to 86 and my mother is still alive.

My indenture runs out when I’m 54. I am going to have to work at making it that long. This is why I couldn’t have another child. Here is a fucking horrible thing: if I fell pregnant this week I would abort. That’s how not fucking ok I am. The idea of extending the indenture by an additional almost 8 years? Now. Not fucking ok. I am not working for that. FUCK NO.

Every time I do that silly thing where I bring up the 60th birthday party I want to have it is me trying hard to believe that I have that much of a future. That’s a sand castle I am not sure that I believe I will ever live in.

I don’t know how to get my head to be ok with the idea that I can’t survive the next rape. How do I endure the days of fear between now and then? I feel like I can’t get yelled at ever again for surviving. I can’t. If I am bad for keeping this shitty meat sack moving then I need to stop. I don’t want to be bad.

I am unable to perform the behaviour as a mother that lets me feel good in that role. I am not being a shitty abusive mother, but I’m not hitting the metrics I self assign.

I am definitely feeling like a shitty wife. My lack of instinctive monogamy is hurting my husband deeply.

Maybe it won’t matter. Knowing that I really should not survive another rape is going to be a good reason to never be alone in a room with people. Maybe I can cut off enough of myself that I will never be put in that position. I don’t think I would be forgiven for whatever I do so I need to ensure it doesn’t come up again.

The only sure fire way to make it not happen again is to die. The second most effective way is to be alone in a room as much as possible until I die. I feel really scared. I feel really helpless. I do not foresee a path forward where I can be alive and good and that hurts very badly.

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?

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.

Emotional hangover

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My whole body aches and feels overwhelmed and dizzy and crappy because I’m having so many emotions. Emotions about lots of people and lots of situations.

The kink community up here is getting big enough/active enough that sometimes there are conflicting opinions and desires. That doesn’t mean anyone is a bad guy or that anyone is doing something that is wrong. I am trying to learn how to effectively communicate and so far I’m not great. I can pinpoint exactly where I was trying to communicate and it sails right past people. That feels bad. That feels like discounting when it isn’t.

It isn’t that someone noticed that I was trying to communicate a thing and said no. The way I was communicating was ineffective and it wasn’t understood that I was trying to say a thing so stuff went in a different direction. That’s reasonable.

But I spent like two weeks trying to figure out how to talk about a thing and I had to spin my wheels very hard and by the time I figured out how to say it the response was, “You should have said this earlier.” I tried. I can point at exactly where I tried and you didn’t hear me. Part of the reason the communication failed is because I was trying to speak as if no one has authority and we are trying to start from scratch and you are used to authority and you just went about your business making decisions without consulting.

It’s an overall apathetic group of people and if you want stuff done you need to make decisions. I get that. That is a really common dynamic. This is such a small group that I was hoping for something more leaderless. I’m not specifically gunning for being the boss. I don’t have that to give.

Our water is off and on because the construction up the hill knocked out a water pipe and it’s not going very well. It has made everything annoying and complicated in our house for two days now.

I had a thing where a friend scheduled a thing then couldn’t make it at the last minute and in this post-Sarah life of mine I am absolutely shit at handling this. T and I had a thing I don’t know how many months ago where for a little while his life got super hectic and he started being flakey about our chats and I shut down and couldn’t speak to him about it for weeks because I didn’t want to explode or completely over react and my feelings about last minute cancellation are fucking huge. I try not to have these feelings. Most of the time I can handle the fact that life has unexpected changes but it’s not easy for me. I set expectations around a thing happening and then when it doesn’t I feel a whole bunch of really overwhelming feelings in a rush and I want to go to my room and climb into bed and not come out for days.

I don’t have space for that in my life. I don’t get to check out mentally for days at a time. I don’t get a lot of undisturbed rest. I get a lot more than I used to, but these things are not easy.

It’s Tommy’s birthday this weekend and that’s bothering me more this year than it does some years. I feel really sad. He would be 47 this year. Only he never got older than 22. He’s been dead a fair bit longer than he was alive. His whole story arc is so sad and tragic and unfair.

My ADHD meds ran out and I apparently don’t get a refill until after some medical tests that aren’t scheduled till next month. So I’m going on and off amfetamines and that’s not exactly ideal for emotional regulation and getting chores done.

We tried to reassign chores. Then a few really expensive wool items of clothing got washed. I’m doing the fucking laundry again and forever after because washing my fucking wool is not ok.

I’m spotting on day 14 of my cycle and that’s not normal. It feels bothersome and emotional in a way I don’t like. I assume it is related to the increase in running lately but it’s always emotionally uncomfortable to me. Day 14 is usually way too early for the PMDD cycle of ugh and crappy to be starting but it sorta feels like I am tanking emotionally and I have no resiliency left.

I feel like shit. I feel sad and lonely and incompetent and stupid and bad at everything. I feel empty and hopeless.

I feel really good when I am out running. I feel fully in my body and alive and strong. Then I come down from the euphoria and I want to crawl under a rock.

But which past behavior?

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I was reading this article about relationships (vanilla/romantic primarily) and one sentence really made me think.

“‘I often end up saying the strongest predictor of future behaviour is past behaviour.’” The author of the article is sharing what his coworker, a clinical psychologist, usually says to people who are stuck and unable to get out of a bad relationship. Not necessarily abusive bad, just unsatisfying/not meeting your needs sorta bad for the most part.

I had to meet a new psychiatric doctor yesterday. I was nervous because meeting new doctors is a crap shoot. Will they be older men who tell me that all of my testable, long-term health problems are all in my head? Naw, it was a young masculine appearing person who looked like they would fit right in at any party I would throw. I instantly felt comfortable. I was meeting him for the purpose of handing over the management of my ADHD and I needed to explain my history with medication, my other assorted neurological/mental health issues, a VERY brief summary of my physical health history, and about a 20 second primer on my history with assault so that I could explain how I came to cannabis in the first place and please for the love of god don’t tell me to go off it.

In the course of this conversation I came upon the challenge of how to explain that I am both consistent and inconsistent. My “past behavior” is all over the map on a variety of different axis. I managed to complete my bachelors and my teaching credential but I failed out of grad school at the very last minute because I just couldn’t do more of what I had been doing. We’ve lost a lot of money over the years because I fuck things up regularly. I fuck up in every relationship. I am incredibly variable in how intense/defensive/aggressive I am and if you come talk to me on the wrong day or at exactly the wrong minute on an otherwise good day I might react like a complete dick. That’s consistent.

What is also consistent is that I show up when people are having an emergency. I help people fix problems. I am gentle when I really need to be. My kids have figured out a trick. If they tell me, “I need to tell you something and I’m scared to because this is the sort of thing you might get mad over. I need you to not get mad.” Then I take a moment to pause every other single thing going on; I fully focus my mind and my energy on being calm and I say, “Ok I am ready to hear it.” Or I say: “I am not capable of listening until x” where x might be a time or the end of a current activity and then we go through the rest of it like normal. Then we fix whatever is going on.

I know that when they say that they are asking me to put myself aside and just be support. I can’t do that 24/7–it will grind me into dust. It is very high cost to put yourself aside like that. I don’t know how therapists do it. Maybe it helps because they usually aren’t having to do that in their personal lives? Dinno.

Anyway, the reason I put this here instead of my blog is because this idea that past behavior is the strongest indicator of future behavior is both useful and problematic. I started dating Noah when we were 22/26. If you were to look at the first four years of our knowing each other you would think that we would still be doing almost exclusively slightly rough penetrative sex and nothing else. That’s not at all what our relationship is like at this point. Neither of us have the physical energy or the time to have sex 2-4 times a day every day. That’s just not something we can manage in our life. Putting that much energy into sex requires you to not put it into other things (children, work, other hobbies) and we just can’t do that anymore. We made commitments. Commitments to be consistent. Oh, shit.

This is something I’m thinking about as I’m trying to learn how to deal with my body in the late-stage motherhood zone I’m in. I may have up to 10 more years until I pass into being a crone (a phase of life I am absolutely ecstatic about getting to because long story I’m not going to write here) and I need to figure out how to manage my body in the meantime.

I have PMDD along with all of my other things. Basically what that means is that I am exquisitely sensitive to every hormonal variation in my body. I think of my menstrual cycle like riding a dragon. There are times when it is wild and bumpy and I hold on to functionality with my fingernails and there are times when it is placid and easy and there are times when it takes every ounce of self control I have not to go get in trouble. I really like getting in trouble, except when I don’t.

A lot of the PMDD extremes were dulled by the postpartum period. It is amazing to me how much difference there is in inhabiting my body when I am not still reeling from the influences of parasites who would have been happy to kill me. Did you know that embryos/fetuses colonize the host body? There is a theory that it happened that way because it is a way for the first fetus to have influence over the future of the parent that will care for them. My body was not real interested in having another baby for most of the last four years. I don’t want another child but right now my body is telling me that the only important thing in the world is getting pregnant. At other times in my life when I did not want a child but my body said, “Hey let’s make a baby” that’s when I would go get into trouble.

You would think this would be a bonanza for Noah. He isn’t in his 20’s anymore and he’s had a lot of years of consciously dampening his sex drive because we just couldn’t do much about it even at the rare times I was even a tiny bit interested. Mostly I wasn’t interested and the idea was appalling.

So which past behavior should we look at to decide what I am going to do in the future? Yeah, that’s tricky shit. I mean, if I look at how Noah was behaving from 26-35 I should think he isn’t capable of getting up every day like clockwork and making breakfast for the family. He wasn’t a regular sleeper/riser at other points in his life. He chose to learn how to do that.

We go through phases. We go through stages. Noah wooed me by telling me that if you can’t look back on yourself 18 months ago and say, “Wow I really sucked” then you aren’t trying hard enough.

So now we have to figure out how to transition into how to ride out the next phase. We can’t run off for weekends together to break rules together to do wildly-inappropriate-for-children activities for hours and hours. We get a three hour date a week in a space that isn’t perfectly soundproof. We can have sex at night before going to sleep knowing that we need to be really really really quiet because you can hear freaking everything through the walls in this house. It’s a real buzzkill when it starts getting good and you hear a knock on the door and, “I need you; I can’t sleep without you.” Sigh. This is not forever.

Don’t have kids unless you believe you will never be ok without them because this shit is a lot.

There are lessons here I need to learn. Lessons about patience and being consistent enough and forgiveness and love and what it looks like to accept that you have to make mistake after mistake after mistake after mistake if you want to get good at something.

I want to learn what it means to be in a happy family, this is my one shot.

So how do I figure out how to manage the part of the dragon ride where all I want is to make decisions other people would view as “bad”. I’m not in that life phase anymore. I can’t go to a Burner party and do drugs with my friends and hunt for interesting prey. I can’t do a lot of things. I get to behave. I get to be a good role model. This shit is boring, y’all. I’m like a zoo animal. I hurt myself when I get bored.

You know how I have 97 projects going at once… most of which I will finish… eventually… I am not a person who stays bored.

But I have to. I have to figure out how to make furtive sex happen. I need to find a way to inspire Noah to continue on this road to queering our sex. Sex is not dependent on a hard cock. There are a lot of reasons that a 40-something dad who hasn’t been having a lot of sex for a decade and a half is not going to be able to get and stay hard for 3-5 hours a day.

It’s not fair to say that what a person has done is the only thing they will ever do. Our sex life once upon a time was tremendously centered around a hard cock and now it isn’t. If I am going to stay out of trouble then our sex life needs to be a much more diverse experience. That’s not a lot of fun when you have to be almost completely silent.

And I was paged for breakfast

Pacing

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Maybe that’s it?

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

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

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

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

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

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

On the third day of med trial my body gave to meeeeee

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Very little notice that I am using anything new. I would say that today I felt incredibly close to normal. I feel like I was a little slowed down but in the “I need more sleep and I’m working too hard” sense rather than in the “Holy shit I’m swimming through molasses” sense. I probably feel less of a malaise of depression. Today I was more patient with the kids than I have been on a lot of days lately.

I didn’t do as much exercising as yesterday (only walked 2 miles but I rode my bike almost 5 miles and that didn’t feel hard at all–more than a mile of it was up an extremely steep hill). We went out and picked litter with a group who has been moving around the city trying to help out in different areas every weekend. It was very productive and nice. Gotta meet our local hippie comrades.

I took the pill at 5:30 tonight because 6pm last night didn’t have me feeling sleepy till 9. I also took some pain medication tonight because my back and neck are in full on fuck-you mode and I can’t keep this up.

I don’t know that it is making a big difference in the nerve pain. My hand is still going numb quite easily. My elbow is on fire. My upper arm is numb until you touch it then it tingles and hurts. I can’t reach the wound site to see how tender that is by myself.

Overall I would say that right this minute I think this dosage is not a serious/permanent solution to the problem but the side effect profile is not so bad that I am terrified of upping the dosage to play with it. I am currently taking 10mg and up to 75mg/day is within normal expected range. Apparently it is expected that it might take 6 weeks to be effective as a pain killer. As of this evening I feel very comfortable with being willing to test that long. That’s actually a pretty resounding endorsement from me. Normally 3 days into a drug means I’m already trying to figure out how to get the fuck off it.

So I’d say a C+ or B- right now? I’d like more impact on nerve pain. It could definitely do more for actual depression and anxiety. But it is a start and it’s not a bad start.

And this is all fucking free.