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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.

Working up to the letter

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Cross posted from FB where my MIL can see it.

I feel deeply conflicted about the type of writing I have traditionally done now that I live in a place that has far less encouragement of navel gazing and public introspection. Yet, here I am. Continuing to exist and needing to type out my feelings in order to make progress. This is how I have made all of my progress in this life.

When it comes to “stop sniveling and go work” very few people have me beat. I do a lot of manual labor and I go hard. It delights me to no end when a large man says “Oh let me take that for you; it looks heavy” then they stagger under the weight of the load I was carrying with only a little visible strain. But there is a cost. I do not have a body that is built for hard labor. What I have is a soul with a little extra energy from all the stardust so I push through long past when I should stop.

I understand to the tips of my toes that a lot of what I self-assign is not “necessary” in the sense of it being part of the base levels of Maslow’s Hierarchy. I’m an educated bitch. Instead what I have is a tremendous sense of obligation and purpose. The work I self assign is part of self actualisation. Is it “necessary”? Well… it depends on how well your other needs are being met…

This is what having privilege means to me. I have the space in my life to care about making and creating things because I do not have to worry about having food or shelter or safety ever again. And thus it moves up the triage list. It becomes urgent. It becomes intense and drowning and necessary for being able to cope with other aspects of being alive.

The overwhelming urge to self actualise takes over the same set of energy that used to go into making sure I could earn enough money to have food–a roof wasn’t going to happen on the amount of money I was making so that didn’t even feel like an important worry. I had a car; I was blessed.

I know how crazy it sounds that this set of urges feels equally intense.

But this set of urges is what gives me the deep well of patience to stand there and say for the 8,235,108 time with a level tone and no frustration, “Ok. Let’s talk again about what restaurant manners are and why they matter.” I have a whole house full of neurodiverse kids who do not copy and blend in and conform like a similar group of neurotypical children will. If I want them to learn a thing then me doing it is not even close to enough to influence their behavior. I have to tell them what I want, when I want it, why I want it, and what will happen if I don’t get it.

I can do that because A) I care very much about doing it and B) I have an intensely separate self that is allowed to have goals and plans and things that I make that I can point at and say “See, I am not just boring and shitty and doing something that no one cares about.”

I know I am dancing on a razor’s edge with fucking up my body until it hurts like this. Howdy repetitive stress injuries, howyadoin? I know that upping my exercise substantially is always courting injury. I know that having tremendous social anxiety and not sleeping well for a week and more and continuing to work like I need the money is bad for my health.

I get that. Everyone has to figure out what they need from quality of life vs. quantity of life.

I know that a lot of the work I am doing right now is not going to “work out” in the way that someone else would care about such work lasting in the long run. I am an intensely kinesthetic person and I don’t tend to learn things well until I learn it with my whole body. I like to read and I can absorb a lot from books but I don’t *know* a topic until I have done it with my body enough times to learn the rhythm.

I never really watched a plant go through a full life cycle before I had kids. I mean, I’m sure I did a bean sprouting lesson in class but I didn’t live in a place and have a set routine where I passed by given plants over and over through their life cycle. I then worked hard at learning the California biome I lived in (there are so many others in California that I’m careful with my claim) and now I have a lot more to learn. But I don’t have as many years at the end to enjoy the fruit of my understanding so I want to compact about 15 years of learning (what I did in California) into 5 years.

This year is my fuck around and find out year. I am putting an absolute avalanche of plants into my garden. I’m exploring guild combinations. I’m thinking about ways to intermix perennials and annuals. I’m trying to figure out how I will rotate through the kinds of annuals that have to move from spot to spot.

I feel like menopause is hitting my body with fervor and reminding me that if I want to get to enjoy the Witch Garden of my dreams all the way through my crone years I’d better hurry the fork up because the time in my life where my body is devoted to the Mother phase is counting down with grains of sand that feel like boulders on my head.

I don’t have time to waste. Which is kind of funny because I have so very much time. I am incredibly fortunate. I haven’t had to be afraid of not being able to get food in about 17 years. My cells do not yet really fully understand that I will never be hungry again. And part of how this manifests in my behavior is that I *must* learn how to grow enough food that I can pass on a way to ensure that my children will never have that feeling. Sure, we teach them ways to make money too. Money is a necessary thing and all.

My family had a permanent address when I was born–they had been in that home for a long time. My mom lost the house when I was three and I did not have a second permanent address until I moved in with my spouse. I very much hope that I will never leave this house. I’m building a retirement apartment downstairs. When the tenants move and everything needs fixing I’m setting it up more fully for wheelchair access.

And I’m going to have a garden I can move around and putter at and hire someone to do the individual jobs too big for me. But I’ll spend a lot of time puttering so I won’t need *much* help.

If I don’t build it now I won’t have it then.

If I push myself too hard I will not be able to maintain it as well in the long run.

Basically, this is how I meditate. This is how I sort my thoughts so I can evaluate when to pause, when to stop, when to rest. The more I allow myself to feel electrically uncomfortable and overwhelmed and drowning in the words in my head the harder it is to compartmentalise when pushing too hard on long-term projects. Other short or medium term tasks appear (in person socialising, written communication, dealing with the water company, oh the kid wet the bed) and they feel enormous and out of proportion and impossibly hard.

Unless I take just a bit of time to set things down and look at them and see the shape of all the pieces better. It’s hard to put the puzzle together if you don’t have your glasses on because you can’t see the outlines of the shapes well enough.

This process is my glasses.

PMDD is so awful

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

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

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

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

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

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

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

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

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

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

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

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

My grinch heart grew three sizes.

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

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

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

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

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

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

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

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

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

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

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

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

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

More medication changes/observations.

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

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

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

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

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

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

Chasing happiness

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Recently some dude I don’t really know was talking in a chatroom about how it wasn’t fair that he doesn’t get to be happy. He didn’t get to (insert hobbies/relationship structures) and that means he is doomed to be unhappy. Instead he has traveled to so many countries I can’t name them all and he’s done (long list of interesting things) but none of that counts.

Man. I feel you. I have attained most of the goals I set for myself. At this point… I don’t seek happiness. Happiness is elusive. Happiness is a myth. Happiness is an illusion. I seek connection. (Fuck you pandemic.) I seek the ability to control my brain enough that I don’t wreck relationships with being an asshole. Happiness is a bar too high to even grasp with my fingertips, let alone pull myself up and over.

Last night I dreamed about seeing an acupuncturist. I was desperate to deal with some of the pain in my body and I’m well aware that acupuncture is helpful. I went in to a clinic. It was hard to find to start with and when I got in and got in front of the clinician she told me I could have exactly one needle because she wanted to go on her lunch break and she didn’t have time to fuss with a lot of needles/help. I picked a thing in my neck/shoulder because it is causing intense headaches and limiting my movement for painting. She left it in for 10 minutes (which isn’t a long time in that sort of treatment) and then told me to hurry out. At the payment desk with the receptionist we had trouble figuring out what currency I should pay in. They kept switching back and forth between various currencies I have used and yelling at me for not having a full wallet of all of them. Why didn’t I have baht handy. Where are my pesos? What kind of stupid bitch doesn’t have her yen with her? Where the fuck were my ringgits? I left crying. Even my dreams are painful.

I’ve been looking at photographs of an autumn afternoon in Scotland. This is going to be tricky as fuck. I need to layer blue and yellow and orange and gold. If I try to do that while the colors are wet I’ll end up with green. This is going to take days of adding layer upon layer upon layer until I figure out the correct proportions. It’s not like the clouds in the dining room where I could just slap on blues and whites and greys until I liked it. And the ladder I am going to need to use to paint a lot of the high stuff in the hall is already scaring the shit out of me and I haven’t even gotten it out of the shed yet. Oh boy. This’ll be risking life and limb.

Why do I need to do this? Why is this important? Is it going to make me happy?

Does anything make me happy?

I learned how to paint from doing sets. From creating backdrops that taught you about the characters without them ever having to say a word. I miss therapy. I miss being able to explore who I am and figure out why I am feeling a way and what meaning it has in my story. Now I don’t talk about myself that much. But I can paint.

I am starting a new stage in my life where I am going to be presenting myself to a whole new bunch of people. Sobonfu told me I had to make my own community. I am trying to create the backdrop against which this is going to happen. The people who are drawn to me and want to be part of the story going forward will be influenced unconsciously by the setting I create. Life is like that. People are like that. We influence each other. We change each other. We connect with each other and become something different now that we are more than our separate pieces we are a new whole together.

It is a kind of magic.

Will it bring happiness? Fleeting moments, of course. Will it bring pain? Talk to my neck that cannot stop grinding as I move it. I need to see a chiropractor. Ugh. We only get to live one life. We only get one run at this gauntlet of opportunities. If I do not share what is in my soul because it is too hard, because there is not enough moment by moment reward then I have lost The Game. My children talk a lot about how they want to keep this house forever and go to and fro with this house as the place they are centered. They are children and all children have fuzzy grasps of the future. But some people do that. Some people have a home base and it is important forever. They could be people like that.

I asked my oldest if she wanted to help me paint the hallway. She said she didn’t want to. She wants to see what I create because she likes the way I paint better than how she paints. Sometimes I wonder if she limits her artistic mediums away from the ones I use because she is afraid of comparing herself to me. I’m not actually that great, my love. You will be better than me across the board by the time you are an adult and even your youthful scratchings seem pretty rad to me. She is sticking to graphite and digital arts for now. That’s fine. Your journey is your own.

She is horrified that I don’t mind her reading smut. Oh my darling. If only you understood how very very very softcore your smut is you would understand why I just grin. I am glad you don’t understand. I am glad you haven’t already been reading hardcore for years. I’m glad you understand that your sexual blossoming is still entirely future tense and you still thrill at the idea that someday you will get a real kiss.

That right there is the satisfaction of a lifetime goal. What is happiness next to the surge of power and righteousness I feel when I think I have kept them safe. That’s not a given in this life. And there is no true shame when other parents don’t attain the same goal. Life is so very hard and unfair and terrible. But I broke the cycle in my family for my children. If I had failed it wouldn’t be fully my fault because it would be the fault of the perpetrator. I have sat like a fire breathing dragon over the cache of gold that is my children. I have kept them safe.

This feeling is better than happiness.

My hands hurt and my neck hurts and my back hurts and I feel sad and I feel lonely and I feel frustrated and irritable and like I want to be nasty to everyone and everything. I really need to start bleeding already. This phase of the cycle is brutal.

What I will do is try as hard as I can to speak gently to the children and I will paint as much as I can this morning. I have a three hour window. If I waste it then I only have myself to blame.

It may not lead to happiness in this moment. That’s ok. Happiness on a moment by moment basis isn’t really the goal. I am building for future me. I am creating because I believe there will be an After Pandemic Time when things are different and I will get to build the community I want so badly to have. I will bring people here, to my lair. I will throw open the doors of my soul and hope that all of the breaking open leads to more love in the world. I will try as hard as I can to tell other people that they should do the things that they feel moved to do. They should embrace the identities that are already true for them. They should yearn and aspire and go do the things that they dream about.

We only get one shot running through this gauntlet.

Go.

A hysterectomy sounds better all the time.

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My mood is really awful for about 1/3 of the month. It turns on/off like a light switch. When I hit the day my period is actually going to arrive I suddenly have a nose full of snot, I feel like I am about to throw up, and I have vicious diarrhea. I feel like someone is stabbing me in the back with an ice pick. Bending over to pull a clean cup out of the dishwasher is stabbingly painful.

I’ll feel better in a few days. But right now I’m at the peak of bad mood plus bad body and it is a fucking nightmare. I am fairly likely to have ten more years of cycles. With 1/3 of the month being (some of it literally) a shit show.

Bodies are the worst.

Well I stopped tracking…

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The onramp to this medication is magnificently easy. I am stunned. I have never had such an easy time with a psych med (ok it’s considered a 4th line antidepressant so it’s not mostly a psych med but… it’s a psych med).

I saw the doctor for an in person exam. She basically said that the placement of the wound means I am almost certainly not experiencing nerve pain as a result of the surgical site. She thinks it is muscular, which tracks with my previous general experience. (My old long-term medical massage therapist and good friend thinks that it is fascia related and he sarcastically says “It’s not like I’ve watched the progress of your body up close and personal for over a decade or anything”.) For the record he was one of the early people to suggest Ehlers-Danlos Syndrome.

So the doctor wants me to stay on this medication in large part because it is giving me one of the benefits I got from cannabis that is anxiety/depression/ADHD related-ish. Specifically: I really struggle with impulsive reactions to things. On pot I have this pause in my brain that allows me to stop and consider how I want to react to things that happen to me. I’m getting the same pause with this drug. It’s not that I am generally speaking super slowed down or dumber… I’m not losing words and I can still be funny and respond fairly quickly. I just have… the ability to decide how I want to react to things again and I really like that effect. Given that this drug is free from the NHS it may be almost worth the price of admission.

Other side effects that are ongoing: I’m slower to wake up than normal and it isn’t putting me to sleep much earlier or more reliably after being on it for a few weeks. I can take elephant level quantities of tranquilizers and just shake them off. Sure I can stay up all night cleaning, why not?

She doubled the amount to 20mg. I’ve now been on this a week and I’d say I’m very acclimated and it’s a mild overall impact.

She also wants me slathering gel Ibuprofen on a few times a day and I would say that is helping somewhat… if I do almost nothing with my arms. If I do much with my arms in a day it hurts about as much as normal. If I do almost nothing the Ibuprofen brings the pain level down.

I’m feeling incredible distress over the level of pain I’m experiencing because I had months of almost no pain. I’m not entirely sure what kicked it up to full speed again. It started getting bad in September/October and it’s been bad since.

I’ve been super low energy for the last week but I think it is more related to my sore throat and mild cough. Everyone in the house feels lousy so I don’t think it is medication related.

I’m having enough trouble sleeping that I used one of my last Lorazepam tonight and I had some brandy.

I just… metabolize drugs like whoa. And it’s 9:10 and I’m a little tired but not really sleepy at all. I took the Amitriptyline at around 6. The Lorazepam at 8. I’ve been nursing a glass of brandy for about 4 hours. I’m not even anxious I’m just… not sleepy. I crave interaction.

On the fourth day of med trial my body gave to me…

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I slept from 8pm to about 6am. I woke up earlier with the vague belief that I should probably get up and pee… but I didn’t bother and went back to sleep instead. That’s nearly unheard of for me.

So… last night I had some cocodamol and two glasses of wine. I have very mixed feelings about how hard my body resists sedatives but I’m fucking tired and if it takes a lot sometimes I’m going to knock myself over the head with a hammer.

I’ve had a few bursts of severe pain in my hand/arm/elbow/shoulder. I attribute that to working. Which… is a mixed bag. I don’t need pain meds tonight. My back is sore and icki but I don’t feel like I want to cry.

Today I have been alert and energetic and I’ve gotten a lot of chores done. I haven’t felt slow or impeded. I don’t feel the same sense of time distortion. I feel a little tired in the “Jesus I’m years in the hole on sleep deprivation” sense but not bad or worn out for me.

I have 15 books and 32 days to go on my reading challenge. I’m almost done with one. I may even be able to finish tonight. We’ll see….

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.

Another day, another chance to record what’s happening

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Med responses are very important to me. I am upset that I have so few written records of my previous drug attempts. Oh, by the way my oldest heard me make a crack about having a hangover from the drug and she flipped out. She thought I was using hard street drugs because I had just run out of cope.

Serves me right for not telling my kids in advance absolutely everything I do with my body I guess?

Today was different. Less exhaustion. I woke up at 4 for a trip to the loo. I didn’t get back to sleep for close to an hour then I was up by 6:30. I took the pill at 7 last night and was asleep by 8:30.

Tonight I took the pill at 6.

Today we had already made plans to go for a walk in the woods with a family who lives about 1.5 miles away from us who are new to home education. They have a 9 year old boy and an 11 year old girl. The two of them both turned up saying that they were hoping for a kid of their gender. I said, “How would a non-binary kid who is not a boy and not a girl who likes to do things regardless of gender fit?” They had about two questions then they both went with it. For the record: that’s where middle kid is at again.

Anyway, I was… more calm than usual? I felt like my brain was slower and on the sluggish side. It was a less pleasant experience than pot but not completely dissimilar? I didn’t have any of the uplift I get from pot but I got a little bit of the “pause” between having a thought and reacting.

My feet are going to sleep ridiculously quickly. If I kneel down to put stuff in a drawer it doesn’t take 2 minutes. Usually I can kneel for 10-15 minutes before my feet fall asleep.

My back has been hurting quite badly all day. Of course I have walked 6.5 miles after it hurt when I woke up. Cause yeah. I carried the littlest home for the final mile because she was utterly wasted.

I’m still having some nerve pain in my arms if I tweak them up to use them in an unusual position. (Putting the baby in the back carrier was a bit festive.) I feel a lot of tightness and general arm unhappiness. I have fairly deliberately not typed much today trying to rest. (Really the last couple of days.)

I have very much wanted to not add more medication to this in the first few days. So I’m not taking anything for the back pain or headache. I want to have a really solid idea of what is coming from the Amitriptyline. Normally I would definitely be medicating for those at this point because it hurts.

I’m having massive time dilation. I can check and see this is the end of the second day. It feels like a lot more than that. I labeled the pill packet with the exact date I am supposed to take each pill because I am worried about taking too much or skipping a day and not noticing.

I am utterly out of patience with the kids but I think that was happening before the meds. Right now it is hard to remember.

In unrelated news: I have 17 books to read in 34 days. Time for some graphic novels (Neil Gaiman’s American Gods 1 & 1). In another day I can finish The Cooking Gene, and I need to sit the kids down and finish Odd Girl Out. That will leave me with 14 books to go. Eep. Maybe my goal was a tad ambitious for this year…

New med tracking

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Started Amitriptyline last night, primarily for nerve pain. I got a solid 8 hours of sleep, which I don’t always do and that seems nice. As I was going to sleep I felt like I got to watch a firework show on my eyelids. Lots of bright white lights dancing. As is typical for me it took more like an hour and a half to really hit me instead of an hour.

ETA: Yeah, I barely stayed awake long enough to eat a little breakfast then I almost passed out on the table so I crawled back to bed. I was in and out for a while making sure that oldest got to school. Then I slept hard until 10:30 when I could tell that I needed to go to the bathroom to deal with blood (it’s the heaviest day of my period. What glorious timing).

My dreams were super intense and overwhelming and constant and highly sexual which I did not expect on a medication known for lowering libido.

I am so groggy that middle kid has been talking at me for a while and I have literally not retained a word of what has been said. I feel slow and stupid and exhausted.

It’s a very good thing I homeschool my 10 year old and Noah works from home because I don’t know how I could have provided care for the 2 year old today while alone. Scary thought. Woof.

I have a really intense headache at the back of my head near the top of the spine and it shoots straight through the skull to make it throb hard on my left temple. My mouth has been throbbing, which is a weird ass feeling. I keep feeling like I am falling only I’m lying prone at the time.

Strangely it was easier to sleep than usual because even though my neck/head hurt quite badly my shoulders already feel a little easier. It didn’t instantly hurt lying on my side. If I reach back gently the surgical wound site still hurts.

The headache is absolutely massive but I am worried about taking another medication on top of what is in my system.

I am sad because my lack of help today is going to mean that Noah has to work more days into December. (He was going to take the month off.) But at least I think it’ll only be a couple of days next week and not the whole month.

Also of note: my typing has been super shitty. It’s taking me 3-8 tries to figure out how to spell a lot of basic words. Yay spell check preventing me from looking in writing as stupid as I feel.

Everything hurts

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I’ve been trying really hard not to complain. Things are tough all over right now.

I’m having problems with my shoulder. Almost 11 months ago I had surgery to remove skin cancer. I had fairly extreme wound dehiscence. If you don’t know what that is (lucky you) it means after a surgery the healing wound site pops open. It was pretty fucking gory and bloody and resulted in a giant, garish, ugly scar. I don’t care that much about it being ugly.

I care that it still hurts. If I lean back on a chair a little too suddenly it hurts. If Noah gently strokes my back and he gets to within an inch of the wound I feel so much pain that my knees turn to jelly. I am not a wimp. I can endure significant pain.

My shoulders have been in bad shape for over 11 years due to nursing all night long with my oldest child and sleeping on my side in a rigid position. But it’s so bad now that I feel pretty constant pain. I miss chiropractic care and massage but with Covid it doesn’t feel like a good idea to be pursuing these sorts of intimate treatments.

Instead I endure. My brain feels cloudy. I know I am more irritable than I would be otherwise. It’s harder dealing with my general feelings of depression.

When I say it hurts I mean lifting a pot of tea to pour a cup hurts. Sometimes there is burning and stabbing pain all the way up and down my arm. Washing dishes is really painful; the pinching movement of holding things as part of the process is nasty.

To give you a bit of perspective… I have finally cracked. House cleaners are going to start coming to the house. That’s a pretty gigantic admission of defeat for me. I need help because I can’t do as much anymore because it hurts too much. I feel really despondent about this. I feel pathetic. I feel sad. I feel weak. I feel like a failure. I literally cannot carry my third child the way I did with my first two. She has to walk. Pushing a stroller is horribly painful. She has to walk. Luckily riding my bike is fairly comfortable because I have worked hard at adjusting the positioning of everything so the only time I really put pressure on my hands is when I am actively braking.

I often wake up with intense, nearly blinding pain in my neck and shoulder. I feel so embarrassed when I take pain medication first thing in the morning. It’s not that anyone in my family judges me. But I didn’t want to grow up and be like my mother.

I think I should probably reach out to the medical staff, dermatologist probably? But with Covid and cancer patients and people with urgent medical problems not being able to access necessary-for-life care I don’t feel at all comfortable raising my hand and asking for help.

So instead I sit in my house and I take the over the counter pain meds and I cry. I don’t feel any hope about ever feeling good in my body again. I am very scared of the degradation that is coming. There is nothing I can do about it. I just get to endure it. I made commitments and I take them very seriously. I will be here as long as I am physically capable of clawing my way through.

It’s going to hurt so very much and I’m scared.