Tag Archives: pain

Working up to the letter

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

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.

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.