Category Archives: living with disability

Ok, it’s time.

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I am probably going to drop the blog entirely for a month or so. I need to write the next book and I am going to take advantage of NaNoWriMo again. Today my kids burst into tears because they realized they know so little about me. I need to tell all the stories from the next 20 years. It’s going to be another hard book to write but for very different reasons. And it’s going to be hell on my arms. I am going to drop the blog, not go on the forums, ignore my support group, avoid Slack, and all idle web browsing. I will be allowed to check email once a day but I will only respond to emergency stuff.

My personal goal is at least 4,000 words per day. This story is long and fucking complex. I will need every ounce of typing ability I have to tell it in a month.

Just in case I die. These are the stories I need my children to know. I hope they can learn from my mistakes and go on to make new mistakes.

Work continues.

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Settling in is a lot of work. I am done with the van rental. I scraped the paint on the drivers door BECAUSE THE OWNER OF THE VAN RENTAL COMPANY DOES NOT TRIM BACK THE TREE FROM OUR SHARED DRIVEWAY. So that sucks. We have now damaged two of his vans and I will never ever rent from him again and we have made the worst first impression possible. Cheers.

The fridge that wasn’t supposed to arrive until October came today. But we can’t get it through the door until we find someone with better tools to help us take the door off the hinges so the box can slide through. Cheers.

I still have a mountain of laundry and goods to sort through and many pieces of furniture to assemble, but it is feeling like an end is in sight. I suspect that by the end of this weekend I will have a normal day-to-day level of cleaning ahead of me. That’s pretty good news.

The beds won’t be here until October though. Every joint in my body is flaming hot and awful and cranky. My back is killing me. My head is killing me. My feet hurt. My legs are really sore. My hands are killing me. My uterus waited until the rental van frantic shopping was done to release the blood bath. (Thank you uterus, I consider that an extreme kindness.) But now my entire lower body is contorting with cramps. Cheers!

I continue to struggle with moderating my cranky level. I keep trying to be nice. It’s a struggle at the moment.

I have a respectable Brexit pantry and a fairly full deep freeze. Adding a couple of things here and there over the next few weeks will fill everything out nicely and we will be ready to weather the storm of political upset to come. Even if supply lines get cut, we will be able to eat ok for a couple of weeks. Thank you prepper background.

My kids are upstairs working on academics. Noah is doing… I don’t know what but it counts as work.

I am almost to the point where I can just chill out. Not many more days on this work cycle. I can see the light at the end of the tunnel and for once… it doesn’t look like a train.

PT

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I did it. I haven’t done the dilation yet. It takes privacy. I should have done it in the bath tub but frankly I am feeling overwhelmed with all the “must do” stuff. I made seven phone calls today. Only four of them turned out to be useful. (Two important confirmations; two appointments with solicitors.)

I feel on the verge of tears. I go through cycles of dealing with my feelings around disability. But the plain truth is I have been in pain for almost 30 years. I need to give zero fucks what anyone else thinks about how I live with that. But I’m not there. I feel ashamed. I feel like I am stupid and pathetic and I should shut up and just work harder.

But I would be this degraded if I had stopped working harder years ago.

It’s a Catch 22.

When Her Sweetness wakes up we will walk over to Jenny’s. I will put one, maybe two plants in the ground because that makes my soul feel better. I will decide after the first one how my arms feel. Middle Child will get to play with his cousins. We will get in our daily walk going one way and we will take a taxi back. We shouldn’t stay very many hours. Tomorrow will be an incredibly long day going to Aberdeen to meet a solicitor. But, this is the process.

Do it.

Rough morning.

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Go to sleep crying, wake up crying. Why not.

Noah wanted me to listen to a chapter of this Buddhist book he gets a lot of value from. The point (very roughly) is that pain and discomfort are lessons and you shouldn’t hide from them you should face them.

But I can’t really get over hearing this from the point of view of being a person who has degenerative, chronic health problems. If I spend all of my time thinking about how much pain I am in I am going to spend my life walking around weeping. And then I am very unpleasant and uncomfortable to be around and people won’t like me very much. I made breakfast pretty shitty because I couldn’t stop crying.

Noah is very much looking forward to retirement. It will mean that he no longer has to do boring work for a pay check and he can instead do fun work for free. He can help people who cannot afford to pay him.

I am looking forward to decades of decreasing ability where I can do less and less of tasks that are basic to keeping me alive and I definitely can’t do any fun extra work because it will hurt my body and decrease my longevity.

I would kill a dog who was in as much pain as I am in. It would be cruel to keep them alive to suffer.

But I need to do everything possible to extend my life. Which means I need to do less work that gives me any pride in myself. I need to do less work that has any physical cost. My coach person was going through lists of things including moving wet laundry from the washer to the dryer and talking about how I need to weigh these costs and think about whether it is worth decreasing my long-term functionality so I really just shouldn’t do any of these things.

But I should spend a lot more time being fully present with how much pain I am. Watching stupid tv to pass time and distract myself from crying… somehow makes me a lesser person. I’m on a full on self-pity trip today, lemme tell you.

I am on palliative care until I die. Most people don’t enter palliative care until they have a few months to live. I am supposed to be doing everything I can to turn this into 30 or 40 or 50 years of life.

Because I owe my family that.

My buddy is right that it’s pretty stupid for us to look at big pretty houses with room for enormous gardens and lots of space to pick up and tidy and clean.

That will shorten my life.

When we have a house I do need to immediately hire help. Or I will shorten my life.

She asked me how many years I think I have left at this functionality. I don’t know. I am in a much worse place than I was 10 years ago. I already demur a lot of activities. I need to spend less time with Jenny than I have so far because it wears me out.

Not because she is bad. I really love her and I’m glad I’m here. I’m glad I will get to spend my declining years getting as much of her company as I can physically handle. But the amount I can handle is lower than what I’ve been doing. My pain levels are absolutely through the roof right now.

And I feel ashamed. I feel stupid. I feel bad. I feel useless. I feel like I can’t do anything right. I am supposed to work and I am supposed to not work. I am supposed to do things that make me feel good about myself and I am not supposed to waste spoons.

When we go to Portland I can’t bebop around spending lots of time with everyone I love. I need to see people once or twice a week and that’s it. Especially for the first three weeks when I am alone with the kids and I have to do all the grown up work. I don’t have anything left over to give to friends and that hurts.

Yeah, I need to do the PT exercises more religiously so I preserve what strength I have left. But there is no more regaining of strength. I’m not really ever going to improve. I’m just trying to slow the rate of decline.

I am feeling incredibly bad about myself today. What is the point of spending this much money on help and being this idle so that I can extend my life?

I would kill a dog who was in this much pain.

PT

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I did most of the non TRX stuff yesterday and all the TRX stuff today. I punted a little on the inverted row with knees bent. I did one rep instead of three. It was my last one and I haven’t done these exercises in months.

I am so fucking tired.

But my joints feel slightly less locked than they did when I first got started. I know I need to do this. It hurts. It is hard.

But. I did it. The only PT exercise I haven’t done at all yet is dilation. I will try to do it in the morning. I’m only going to do that one every three days. It’s really emotionally hard.

I do want to live as long as I can to stay with my family. I know I have to do this.

Let me find my crystal ball.

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“How long do you think you have at the current level of physical function, and are you taking that into account as you look at the next x years of your life. That house seems to have a lot of steps, for example. Besides getting more rest because you consciously rest, are you thinking about how your environment impacts you in the long term? For example- in our new house we put a 3/4 bath on the main level, and planned a path to retrofit an elevator if necessary in the future. The doorways were planned to be wheelchair friendly on the main level. We’ve had enough short- medium term health things that have required avoiding stairs to know how important that is. Are you planning for the house to help you be in less pain?”

This is a hard one. I have absolutely no way of predicting when my body is going to fail. But yes, I need to be planning around a ground floor bedroom for me even if everyone else is up stairs. No doctors have been able to give me a timeline on my failing body. Frankly mostly they express shock that I am still moving.

I’m not planning around this how I should be.

I need to be honest that the reason I can handle coping with this apartment only being cleaned to the level the kids and Noah want to clean it is because it is half the space we are used to and we are leaving soon so the corners of muck aren’t my problem.

I am way past the point where some rest is going to restore my vitality. My vitality is gone. I am playing a losing game until I die. But will that be a fast five years or thirty years of a slow but steady decline? Will I last fifty years?

I don’t know. I know that my great grandmother was considered too mean to die. I like to think I will live long enough to be a torment to my grand children. I’ll be the grandmother who says no and means it. Ha.

I’m actually finding this upsetting to think about. I don’t know how long I will have this level of functionality. I know that keeping as much movement as possible in my day to day life will increase how long I keep this level of function. Any movement in the direction of being sedentary causes me problems. The more I sit the more I hurt. Stairs are a mixed bag but walking upwards of three miles a day really helps. My hips hurt, but they hurt more when they are locked.

I’m really sad thinking about the ticking time bomb of my body.

I travel like I do right now because I will almost certainly not be able to do this when I am old.

This is why I hired her

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“What makes you so special as to not need the same care and consideration as other people? (And I don’t mean the experiences you have had, I mean what do you think is intrinsically so special about you that you don’t need care and consideration. I don’t so much care what other people have told you as what you tell yourself at this point)”

Well, fuck. Thanks for putting me on the spot. Hahaha. Uhm, err…

Ok, this is actually kind of hard to admit and I feel awkward and stupid and silly. I do actually think I am special. I do actually think I am tougher and stronger than other people. I keep going and I keep working long after other people stop because they “can’t” any more. I mean… other people have phrased this in ways that I like and that I agree with, “You have all the force of personality as a star being born.” Yup. I mother fucking do. (Sometimes people say nice things to me in addition to shitty things.)

I believe I am capable of working no matter how much pain or distress I am in. There is a point where I slow down and there is a point that I stop but that point is long long long past the point when all medical tests say I should have stopped months or years ago. I am absolutely freakishly strong. It’s not that I can dead lift more than other people (I can’t) it is that I have a single minded focus and ability to put aside all care for myself and WORK. I am not always a nice person when I do this.

I believe this is part of how my ancestors, who were frankly despised folk a lot of the time, kept surviving when lots of folk wished them dead. We can put our heads down and work and make it through and fuck you very much.

My medical support team (there are a lot of people in it) have been trying to talk me into doing less for literal years. They have been pointing out the growing irreversible damage and hoping that noting this will slow me down. It has had… some effect on my behavior. But then I pick up a project and blow through things like you wouldn’t believe.

Some folks have asked me if they could hire me to do art in their houses. I said no. The way I work is extremely deleterious to my body and you can’t pay me enough to cover the medical care I need to survive it so I can’t give that labor to you and put the strain on my family. It’s not fair.

Why do I take such pride in cleaning my own stupid house? Because when people walk in and gasp and say “Oooooh, I can’t believe how clean and tidy and inviting your house is” I swell with pride. I did that.

I feel like if I am paying someone else to do the cleaning I don’t have as much right to the pride. I want that pride so badly.

My mom spent a lot of my childhood crying because she didn’t have the time or energy or money to have a home she could be proud of. That was a major wound for her. In some way I feel like I take so much pride in my space because I am trying to heal that wound, that isn’t even exactly my own.

But you and Jenny and Pam are right. Paying house cleaners is cheaper than paying for physical therapy and massage and chiropractic care and acupuncture and therapy for my kids after I have hysterically screamed at them to clean their shit up.

This sense of pride really has to evolve. I am struggling with that. It is hurting me and my family at this point.

I can hold on to being nice when my pain level is consistently above a 5. It’s hard and it takes effort, but I can. When my pain levels are higher than that [meaning a lower number on this scale] (I like this scale: https://www.theacpa.org/wp-content/uploads/2017/08/Life_Scale_3.pdf ) I don’t hold on to being nice very well. I don’t do very well when I can’t do work. I feel bad about myself.

Like, I should have tapped out of the road trip long before it finished. I was at the point of having a black ring around my vision because I was damaging my body so much that it was impacting my ability to see. I was a bitch. I had no patience. I slapped my daughter when she sat down to rest and I thought we needed to finish work before I got to rest so her sitting there casually was an absolute affront. I am not saying that to be prideful. Slapping her was wrong. But I don’t hit my kids on the regular. That was a major department from my normal control.

I need to change my perception of my ability to work because I need to not get to that point again.

What do I tell myself that makes me so special? Why do I deserve less care and consideration? I tell myself that I am a tool. A tool with an absolutely absurd ability to accomplish work. And you don’t love your tool. You use them up and throw them away. The trouble is that my family really does love me. They don’t want me to be thrown away. They want me to be around for decades. If I continue to damage my body like this… I won’t be. It’s just a simple, literal fact.

“In my own struggle with ADD I’ve learned that sometimes wanting to change the system is just a distraction from whatever I’m trying to actually get done. It’s a handy distraction I can really get involved in and suck up all my time instead of just doing the other things. I consider it a red flag to get too bogged down in reworking the system. Not that l don’t ever change it, but I try and wait to work on the system till after I’ve pressed forward on the thing I’ve been avoiding. If I still want to change it, I will, but often I don’t want to any more”

I know what you mean. My problem is that a lot of things are falling through the cracks right now because for years I had an excellent white board system that kept me from forgetting up coming stuff and currently I am trying to write things down on paper and then I never look at that piece of paper again and… that’s a problem. I do need a system. I am not able to have a wall system while we travel.

I am trying to set up Omni Focus (a computer based tracking system Noah loves) because I am on my computer and this lets me set up things with greatly delayed notifications so everything doesn’t feel like “Do it today or it will never get done.” Yes, in some way it is a distraction but it is also solving an actual problem I’m having right now. I’m struggling with keeping all the various levels of schtuff in a place where I go back and look at it. It’s been a problem for the past six months since we took the white boards down. A lot of things have fallen through the cracks. The kids are doing ok with their level of commitment on paper, my task lists are really complex and have many sub layers. I need a new system. It’s not a distraction it is important.

Also, I am an organization nerd and I am having fun thinking through whether things are parallel, sequential, or single action. That’s a useful way for me to process the things that are going on for me. It’s also forcing me to think through things like: physical therapy isn’t “one more stupid thing to do” it is mandatory for me to feel good and be happy. It is solving a major life goal because I can’t be a good mother or a good wife or a good friend if I feel bad and I am miserable.

Cleaning the table after meals is one more stupid thing to do.

Getting shoes that don’t rub me raw and give me terrible blisters in the rain is not one more stupid thing to do. It’s part of making sure I feel good so I can be happy.

It’s useful to try and tell the difference between these tasks? I’m trying to think about tasks in terms of what goals are they serving. I don’t think I have done that in this way before. The web copy on the Omni Focus website is absolutely nauseating in how it phrases things but it isn’t wrong. Mind mapping my goals in life is really important. Thinking through how my behavior enables or supports or inhibits different goals is really important.

Like: I truly want to rewrite Outrunning Suicide before the kids start school. I would like to co-write it with them. That means I have 14 months. So I’d better figure out how to schedule that work now. Or I will run out of time and never get around to it. I want to write a book that is teaching life and coping skills for kids in their current age bracket. I can’t think of better co-writing partners. (I briefly mentioned to them quite some time ago that I would really appreciate doing this and they said they would really want to help me do this. Both kids want to help with the phrasing and with illustrations.)

I have a lot of things I get distracted by in my head. It’s useful to be able to map it out, put a due date on it and stop thinking about it until it is time to think about it. Right now with the paper method I am having to keep thinking about it or I will forget entirely and never do it. So we’ll see.

Thank you for challenging me.

Homework (what do I need to work on)

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This morning I am waking up feeling gooey, schmoopy, overwhelming love for my family. Ok. Time to think about the stuff I need to work on about myself.

What are the whack a mole problems that come up? Many of them are problems in me and related to my thinking as much or more as they are rooted in anyone else’s behavior. Like: I really struggle with feeling like I want/need my kids to be more self motivated than they are. Then I get these reminders that they are actually really doing exceptionally well for their ages and developmental levels and my expectations are almost certainly out of whack. My kids have different things they struggle with: my son tends towards passive aggression and my daughter tends towards executive function failures. Ok. That’s not out of line with fairly normal stuff for kids. What I need to work on in myself is feeling more patience with the fact that they struggle in these areas and I have chosen to not put them into school where there would be teams of other adults teaching them how to manage these issues. I choose to be the one who must solve these problems or it is my fault they still exist. Sometimes I struggle with feeling overwhelmed about the magnitude of difficulty of work I have assigned myself. But it isn’t my children’s fault that I assigned myself this role.

The thing is, even though I struggle with some of their behaviors sometimes… I truly like my children and I feel like I have done well turning them into little people to be proud of. It has been the result of massive, overwhelming work on my part. I watch my children night and day and give them little course corrections, assistance, reminders, and help. NO FUCKING WONDER THEY TREAT ME LIKE THEIR EXTERNALIZED BRAIN. I can look at my Eldest Child and tell what she is thinking about with a greater than 90% accuracy rate. “You are having x feeling about y thing. Do you think maybe you should do z?” Her response is always “HOW CAN YOU DO THAT?!?!?! That’s a good suggestion…..”

I only guess my Middle Child’s thoughts and feelings with a more like 40% accuracy rate and he and I both feel a sting because of that. He consciously and deliberately shields his thoughts more. He works on having a blank facial expression. He works on projecting feelings he is not having. He got that from me. I feel like I am letting him down by not being able to read him better. He feels misunderstood and less appreciated. But he works on making it hard. He wants me to find a way to work harder and still read him so that he can feel as understood as EC. That’s complicated.

He got in trouble this week. He set his assignments on Monday. I didn’t add extra shit. He picked what he wanted to do for the week. He needed to get his work done on Thursday so we could go have a visit with the cousins. He didn’t get his work done. I was pissy and impatient because he really didn’t come close and he spent the whole day dawdling and I lost out on a visit too. (I can’t just leave him home and go without him for a list of reasons.) So I told him that since he wanted to just sit around and not get his work done during work time that he could just sit around and do nothing during play time and he could do it in his room without toys. He didn’t have a fun day.

The next morning when he woke up he had a fire in his belly because he didn’t want to miss out on any of his plans or on EC’s birthday fun. He got up super motivated. He got a bunch of his chores done before I even saw him in the morning. The first time I saw him in the morning was when I was waking up and still sitting in bed. He came in timidly and I smiled at him and invited him into the bed for morning snuggle. (We have much better days as a family when we start out with everyone snuggling for at least a few minutes.) He talked about his plan for getting everything done early so that he had a buffer in case he planned poorly and it took longer than he intended.

He got everything done with time to spare.

We walked over to Jenny’s instead of going on a family walk and taking a taxi. On the way we had an hour to talk to each other. The conversation was wide ranging and interesting. I asked him what he thought about the day before when he was in trouble. He said he spent most of the time trying not to think. I said, “So kind of an extended meditation practice?” He said yeah. He didn’t use the word, but he was trying to not catastrophize. He said (barely paraphrased), “I was so grateful that the first thing you did when you saw me this morning was smile at me. It showed me for sure that I was right to try not to think all the super bad thoughts. I made a mistake and I’m going to be able to get over it and you will get over it and we will move on.” I told him that yeah we will move on. He’s a great kid and I love him very much and I need him to trust me. So when I say “Do x so you can have y” if he doesn’t do x he can’t have y.

He said, “I know. It’s part of why I respect you a lot. I know you work really hard at being someone who is honest with me every day.”

I have a lot of fear that part of his passive aggression is an attempt to get back some control from just how controlling I am. It’s not a healthy way to try to get back some of that control. He has a lot more control over his schooling now, but I think he needs to have just a little bit more. I think that when we get a house again he and EC are going to be allowed to shut me out of their rooms for a full year so they can figure out their own tidying habits without me needing to be so fucking controlling because we are packing over and over.

I truly literally have to be this controlling right now or we won’t be able to get packing done with the travel. It’s rough.

When this is no longer necessary I need to give them a bunch of space to try things for themselves and fail.

I really struggle with the fact that they don’t have much in the way of long-term planning skills… but that’s my problem because they are age appropriate or a bit above. I need to control *myself* more, not them in this area.

We have done a lot of work on getting them to see me as an independent person. Frankly, having Her Sweetness has helped. They can see when I need to not take care of them because I have other obligations and both of the big kids are super mature about understanding that they got to be the whole center of my universe for many years and it is wildly uncool for them to not let Her Sweetness have a similar amount of time and energy. We are still struggling on getting them to let me rest without interruption, but they are better than they used to be and if I were willing to set more boundaries I think they would fall into line.

The struggle is I hate setting boundaries with them because that feels like I am doing a mean/punishing thing. I’m not. I’m valuing myself.

I really struggle with valuing myself. I really struggle with saying, “I need to not do anything for anyone because I have to take care of myself.” I think I went to so many doctor visits because every time I walked into an office the medical practitioner would freak out about how badly my body was doing and give me a tiny little bit of support so I could go back and do more work than I am truly physically capable of doing. I’m not going to have that medical team keeping me on life support here.

I have to value myself enough to say no way more and that’s hard. I get so much of my self esteem from doing things for people. From doing work and supporting people I gain the sense that it’s ok for me to keep taking resources for myself because I am sharing as much as I get or more. But this isn’t sustainable.

I don’t actually think the problem is with my kids behaving badly. They are really amazing children. I think the problem is me valuing myself and my need for rest. I absolutely literally require more down time than I give myself. I have to exercise in a fairly regimented way and I haven’t been doing it because I am exhausting myself providing emotional care for other people. That’s not healthy or a good way to be a role model.

I don’t want to teach my kids to be how I am. Which means I need to change.

I need to spend more time resting. I need to spend more time with just adults not taking care of children. I need to turn down opportunities to do labor (emotional and physical) for people. Not because I hate anybody. Not because I am angry and throwing a tantrum. Because I need rest. Because I need to love on me the way I love on my children. Because I need to spend as much time paying attention to my needs as I do to my children’s needs.

I learn a lot from my kids. They work to set boundaries for themselves. They understand that limits exist in their lives for their benefit. They do better and feel better if they exercise and eat healthy food and turn off the screens at night and get good rest.

I need to learn from my children.

That’s how I feel about you.

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My kids and I were talking about negative moods yesterday. I spent a lot of the day crying and when I wasn’t crying I was mostly grumpy. I’m depressed. I fucking hate Mother’s Day. I am over extended as a lifestyle and there are consequences. This is normal cycle for my shitty brain. Negative moods are part of life.

They said that they have each had thoughts wondering if life would be better if they were dead. I said, “Well–do you feel like your life would be better if I were dead?” “NO NO NO NO NO” “Well, that’s how I feel about you. I feel like the world would turn dark and grey and I would never be fully happy again. I made you because I wanted to see you have a different childhood than mine and I wanted to see you grow up and I wanted to be part of your life events. Losing out on that would basically mean the end of hope for me. So no, it would never ever be better if you were dead.”

They both got that deep thinking slightly pained face.

Life is hard. Life hurts.

I talked to them about us having a family history of suicide and how that means we have brains that are oriented towards hopelessness and depression and we have to find bulwarks against those feelings. We have to find ways of coping on our dark days. We are not in the same position our relatives were in when they gave up hope. They asked me questions about the people who died and I told them about the lives of the family members who suicided. We don’t really know for sure if my grandmother suicided or if it was an accidental over dose the way it was for Grandpa’s wife, the lady Eldest Child is named after. We know that those two women were in tremendous pain and they felt empty and lonely and like nobody cared very much about them.

I asked my kids if they feel like nobody cares about them and if they spend their days alone and hurting? They said sometimes they hurt, but they know they are liked and they can barely find a few minutes to be alone. We talked about how I effectively ended my pre-kid life to ensure that they didn’t feel alone or abandoned. That got a little smile of acknowledgment.

I am there for them in a way I have never experienced and will never experience. They know I struggle with needing a few hours a week away from them and not feeling like that is an ok thing to need.

I told Middle Child that part of the reason I am so militantly supportive of his trans stuff is because I don’t want that to be part of why he gives up hope on life and I know it can work that way for a lot of trans folk. I accept you. I love you. I approve of you being whoever you are in this life.

I can’t make everything easy for you. I wouldn’t if I could because someday despite my best efforts I will die and you will need to be ok without me and I need to prepare you for the fact that life is hard. Life involves a lot of suffering. That’s just… life.

But for every single day that I am alive there is at least one person who desperately hopes you will cling to the tendrils of hope and keep trying.

They said they feel that way about me too.

So I’m still here.

They asked me how my mother responded to me having bad days as a kid. I told them she would say terrible things about what a burden I was. They said I have never told them that they are a burden; I say they are a lot of work and I am tired… but they don’t feel like it is the same thing. I said I agree. I don’t think they are a burden. I think they are a gift.

Not dreaming, chores, screens and friends

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Apparently the way my brain decided to handle “I am sick of fucking nightmares” is “I am not going to let you get into REM sleep because I am going to wake up every half hour.” It was a rough night for me.

Yesterday was mixed. It was mostly good with some frustration in the middle around fucking screen time. I hate computers. (Yes, I recognize the irony that I am typing on one and typing is basically my inside voice.) Yesterday Middle Child and I got up early and got on a bus to go downtown to rent a car. On the bus we worked on homework and snuggled and it was fun. It was frustrating on the way back because Google Fi has decided that I get phone service everywhere…. and data when I am on a wifi network and that’s it. Noah’s phone has data all over the island. Urgh. So I had to call Noah and have him talk me through getting on the freeway. Luckily he is a patient man.

Middle Child and I stopped on the way home and had a snack. Eating together on dates is like a thing.

I dropped him off, picked up the baby and the laundry and headed to the laundromat for two hours. Woo. It took so long because only one washer was available while I was there. That’s ok.

When I got back… it got frustrating. With the recent introduction of Parental Controls… a lot of websites aren’t working anymore. Netflix isn’t working because it is tracked in so many ways that Parental Controls blocks it. (I am sorta unhappy about Google and Facebook tracking my Netflix usage anyway now that I know it is happening. Fuck Google. Fuck Facebook. Evil motherfuckers.) I started getting loud and Noah told me this wasn’t worth yelling about. He was right.

I decided it was better to make the kids go outside for a while. Noah and I looked at the controls again, decided that because the kids get 4 hours and that’s long enough to whine about not getting everything I will let them have 1 hour a day on weekdays (it will mostly be used for school time) and 2 hours on weekends, which will let them play a game or two but not long enough they will demand movies.

Because I am god damn sick of fighting over their computers.

I waited until I chilled out. Then I went outside and talked to each kid separately about why they lost unfettered access. At the end of these conversations they both hung their heads and said they agreed with the restriction because they have not been polite at all about their computers. (They were supposed to set their own timers and limit their screen time. Never happened. They were supposed to do school stuff…. that was mixed.) They both agree that they have not been responsible and I need to take that responsibility away from them. They also understand that me standing over them to monitor them while they are on adult accounts isn’t fair either. So here we are.

I mixed in talking about things I was frustrated about in other areas (each kid got very different feedback because they are frustrating in such different ways) and how I am off my medication and I will be for the foreseeable future and let’s talk about how that is going to impact my body and my mood. Phrased that way they both said, “I’d rather be limited and deal with that frustration myself than keep making you track my screen time. That will go poorly.” Yup. It will.

After that Noah was done with work for the day and we drove up to explore the western edge of the end of the highway on Oahu. We played there for about an hour then drove down to Pokai Bay so Noah and the three kids could play in the water while I talked on the phone to one of my friends. (No data= no video chat. Dangit.)

I don’t have consent to talk about her in detail so I won’t. I will say that we have been friends since the 7th grade. When I talk about how Noah’s friends are rich and mine are poor…. she’s on my mind. She is someone who I think about a lot. I don’t write about her for lots of reasons around her privacy and people being judgmental pieces of shit. But it’s really nice talking to her. She asked why I don’t call more often. I said, “well… I do this thing where I find people who are really crazy like me and I try to enmesh with them and then I get really anxious about bothering my less crazy friends and I withdraw.” She said, “Well I’m a little bit crazy so you should call a little bit more often.” Then she laughed. It was nice. She has a tremendous amount of experience with kids and I learn a lot from her. She’s one of the most giving people I’ve ever known. Her kid has had some interesting life experiences and she has told me she was really glad she’s always known me because she learned about a lot of things from me and when it came up with her kid she felt calm and collected about going with the flow.

I am grateful for her perspective and time. I will try to call more often.

I need to schedule a call with my other buddy in Salt Lake. He completes the trio of my middle school friends I’m still in touch with. His mother in law hates me and he finds that delightful. Ha.

And I get to see Jenny soon. I am trying as hard as I can to put my intensity in a box because I can’t explode all over Jenny and her family. They are all very reserved people. It is overwhelmingly important to me that I create a healthy connection with her kids and they are sensitive souls. I have to meet them where they are. I am the adult. That feels like a lot of pressure. It’s self imposed! Mostly? I want this meeting with my namesake to go better than the first one. I feel pathetic about it, but I want her to like me. I was too assertive the first time and she was like “Fuck you stranger lady” and that was fair… (She was under 2. The fuck you was entirely body language.)

I earn people pushing me away when I am too intense. But I am really fucking intense. That’s just a fact. How much can I put that intensity in a box and still be an authentic piece of me? I struggle with that balance.

You know, like how can I diplomatically talk about my feelings so I order my brain versus how much do I get to the point of screaming “Fuck you, fuck you, and fuck you. Who’s next?”

Sigh. Balance. I continue to lurch towards it.

Last night I had a chat with Middle Child about his allowance savings. He said he feels like he doesn’t deserve to have it because we are walking past so many people who have nothing. I talked about how sometimes he uses his allowance to pay for things he breaks, sometimes for things he wants and I will not buy, sometimes just for splurges and if he gives all the money away he won’t be able to meet any of those needs he has for autonomy.

I talked about trying to find the middle way. (Thank you Buddhism. I am not a true follower, but every faith/religion/cultural path has some value for me to learn from. That’s what California Woo means to me.) I talked to him about trying to find the balance between saving up for yourself so you can meet your needs versus sharing what you have extra. I asked him what would happen to our family if I gave away 80% of his father’s income every month because I don’t feel like I deserve it. His eyes got big as he processed what that would mean in terms of housing, food, medical care, everything changes. So instead I share 10%.

We can meet our needs with 90% and we don’t have to stockpile the last 10%. We can share it and help other people have lighter loads. I can’t really give away more because I have a lot of medical expenses that are going to go up as I age. I have to prepare for that or I am deciding that I need to die early.

But it’s not about giving it away because you don’t deserve it. It’s about recognizing that our life is really good and we have the ability to share…. so we should.

He’s working on writing up his feelings about the values in a book called Islamic Values for Children. (DUDE! It’s online! Oh that’s awesome!) It’s neat helping him process what he agrees with and disagrees with in this book. Like, he said that we need to pursue (I’m paraphrasing slightly) understanding creation because if we don’t we make bad decisions and we hurt ourselves and the people around us: like killing off 80% of bugs in the world. Humans have used pesticides for a long time and now we face the possible extinction of our species because food is going to have a hard time growing.

I love hearing where his values differ from mine. But he has been raised hardcore in an environment where “Enlightened Self Interest” is a big deal. Being selfish isn’t wrong, but you need to be selfish in the concept of helping yourself be ok loooooooooong in the future.

It’s neat seeing how that plays out for him.

One of the hard things about Noah’s job is that he always feels like he isn’t quite doing enough to earn all those buckets of cash and all the conference invites so he works… constantly. Today and tomorrow he is taking off work! We get to go play on the island. I’m happy about that. I don’t have a plan for what we will do. I want to take the kids all the way around the island because then the kids get into these intense chats about how the plant life and rocks change. They are observant in ways I never was as a kid. Yesterday Eldest Child was talking about what the rock formations mean in terms of lava because she learned about it in one of her books. That’s so awesome.

“Hey, the plants aren’t so brown. That means this side gets more rain. Hm, I wonder why this is the line where that changes?”

This kind of thing didn’t occur to me as a kid and I love standing near this. I like them so much.

But first… we should pack 90% of our stuff this morning. In 48 hours we go to the airport.

I need to spend most of my time focusing on my family because I need to feel what that means. But I won’t forget my friends.

Oh, by the way: the place in Longview fell through. The AirBnB host said that we couldn’t have the independent apartment that long but we could rent two bedrooms in her house and share her kitchen and living room for the same price! Uhhh… no. That’s not a good deal for us. My kids are essentially nudists. They need to be able to have their own space where they can unwind without having to perform certain behaviors for a host. So I found a place closer to downtown Portland that is actually about $600 cheaper for the whole stay. It is in a much more crowded neighborhood, which will be mixed. Less ability to just “GO OUTSIDE” and more ability to walk to grocery stores. That’s a balance I will cope with. The house is sparsely decorated and one floor. That was shockingly hard to find in the region. The houses on AirBnB available for a long stay are mostly multi-story or decorated to within an inch of their lives. Yeah, I’m not dealing with that shit with a nearly-walking-baby.

Last night we had pho for the third time since reaching the island. We are really on a kick. I ordered the spiciest one on the menu then added three heaping spoonfuls of chili because it just wasn’t spicy enough. I wanted my lips and tongue to burn. It was awesome. Afterwards we had our first dessert since reaching the island: shaved ice with ice cream on the bottom. I added mochi balls to mine. We all had very different flavor profiles and it was funny how much the differences really are indicative of our personalities. EC had caramel ice cream with mango shaved ice, MC had coffee ice cream with cherry shaved ice, Noah had gosh I can’t remember his ice cream but he had guava and passion fruit shaved ice (with coconut sauce). I had cookies and cream ice cream with vanilla/pineapple/pina colada. The other three of us had mochi balls instead of sauce.

The baby went nuts trying everyone’s. She thought it was the best thing that’s happened to her in a long time. She is starting to understand “We look at a menu, then people go away and bring us good things to eat.” It’s fun to watch. She does a lot of intently looking at the menu then pointing at pictures. We often order what she points at. She is certain that the world is working as it should. Ha.

D–you didn’t do something terrible when you left that comment. The timing and the phrasing were not my ideal. But that happens in relationships. I am almost done being an exploding asshole. I am so sorry you got swept into all the upset about other things and other people.

Some of my grief is legitimate and real and totally deserved. That doesn’t mean I should lash out at everyone. Sometimes I do though and that is really fucking shitty. I try as hard as I can to limit my explosions to being here. I love you and I appreciate that you have tried to share what you have spare over the years. That wasn’t a lot and that’s ok. I don’t get to demand more from anyone who doesn’t have it going spare. Really I don’t get to demand more from anyone.

My black hole is not your job to fill. It really isn’t. I know that. It’s why I try to retreat when I am being inappropriate. Sometimes that retreat involves inappropriate yelling in my space. I imagine that is not easy. You don’t want to feel like you are hurting me. You don’t want to feel like you did something wrong.

I try to withdraw when all you have to do to be wrong is be near enough to hear me as I am screaming about being in pain.

This is why I used to get called bipolar

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I go in cycles. After 34 years in therapy my clinicians do not think I have bipolar disorder. But I do get into hyper-intense work states (now they are saying it is because of ADHD + Autism) and then I wear my body out (thank you HPA axis dysfunction + CFS) causing me intense pain (EDS + Arthritis+Fibromyalgia) + when I can’t work I feel like all of my value as a meat creature goes away (PTSD+GAD+Depression) and I have a hard time letting myself rest enough so that I restore vitality.

And when I get back on my monthly cycle I have hormonal dips 10 days before every period (PMDD) where I am suicidal and I hate myself.

So I’m not bipolar. That happens on its own cycle and I don’t seem to react to that.

I have trauma anniversaries that trigger depression, but not manic responses. But those are getting better over time. Not standing in one place waiting to feel like shit that I can’t repair things with my family helps.

I got into a terrible work cycle with my kids. Then I had another baby. I am exhausted to the marrow of my bones. The people who told me they would help me lied (as usual) causing all kinds of emotional damage on top of the physical damage I did to myself by giving long past the point when I should have let my kids sit in a room and cry if they need to while I fucking sleep.

But the past is the past. No more infants.

How do I learn how to build sustainable work instead of sprinting? What are these vaunted ADHD Life Skillz I’m supposed to already have so I can teach them to my daughter?

Oh fuck me.

Choices.

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“It’s a shame you choose to take it that way. I see people trying to help you.”

When I say, “I should back out of this conversation because I am incapable of hearing feedback in a positive way”… telling me that it’s a shame I am ‘making this choice’ is really harsh.

I’m autistic. I have ADHD. I have PTSD. I have Generalized Anxiety Disorder. I have depression. But sure, if I’m having a bad day I should just buck up and choose to Be Positive! It’s a shame I don’t make that choice!

Thanks for helping me feel like my problems are because I am lazy and bad and I just won’t make the right choice.

Maybe that is one more place I need to stop going to talk to people.

Comfort and creatures

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The worst part about the house we are staying in is the mattress quality. My back is very sore. I would say that I still haven’t crossed the pain threshold which feels magical to me. I have not been doing my PT exercises and that’s a problem. My body is degrading again. I am having a hard time doing them in the main room of the house with everybody present (I don’t know why, no one cares) and there literally isn’t floor space to do it in a bedroom. I have less floor space in this bedroom than I had on the cruise ship. I said I would investigate a massage yesterday and instead I took the kids (the younger two) to the beach. This was good for my relationships with them (I have not been having enough fun with my kids) but it means I am, as usual, prioritizing my kids over myself. I really struggle with this balance.

I told Noah that if one of us was going to have their “alone time” this week be doing the laundry at the laundromat it should be him since all of my other “alone time” is medical care and his “alone time” is usually drawing or playing games. I did have three whole video chats with friends this week. That was tremendously helpful for my mental health. I feel less like a fuck up who can’t ever get anything right.

There is a balance and it is hard. If you look up advice for parenting with most of my medical conditions the first or second piece of advice is to have a trusted support team so that other adults can take care of my children and I can have a lot of alone time to rest and recharge. Ha. Haha. Hahahahahahahahahaha. Fuck you. I completely and fucking totally failed to find support. So that piece of advice is basically worthless to me. Which means that in the eyes of what authorities I can find… my basic existence is too much stress for anyone to handle well. That does not excuse my failures or make it ok that I am a bully who dabbles in abusive behavior.

I tried to go get my nails done because it is one of the very few activities within walking distance of where we are renting. A pregnant mama was ignoring her 4 year old so she could get some me-time and I ended up entertaining the kid because she was talking to me. Sigh.

I want to be able to keep writing about my fuck ups. Not because I am bragging: so my children have the ability to go back and check their memories against what I was writing at the time. If they grow up and tell me that I hurt them… I won’t be able to deny it. I will have to say that yes, I did those shitty things. I wrote it down so that I could never minimize your pain. I hurt you and that is terrible.

My mother and sister rewriting history and telling me that they supported me when I prosecuted my father was really damaging. I want that to be literally impossible for me to do.

I will say, “Yeah. I was a complete fuck up for about a year there. I failed in a bunch of ways for a bunch of reasons. Maybe we can talk about those mistakes so you don’t have to repeat them.” Like my friend did for me recently. She told me “When my kid was (age) I did x because y and z were going on and it damaged them.” My friend was trying to warn me.

It is hard the way the needle is moving generationally. Many of my older-than-me friends made mistakes around hitting their kids. I am not allowed to let my kids have the option of kneeling on rice twice in their life to find out what being uncomfortable feels like. The path to being correct grows narrower over time and I am not allowed to leave my kids alone the way I was nor can I find anyone to help me so that I can have stress relief. I am not asking for pity. I am trying to find a way to give myself enough grace so that I am capable of doing better.

If all I do is hammer on what a failure I am… I will do worse and worse because I will freak out. My comfort matters. I can’t excuse bullshit. That’s not ok. But I am doing a hard thing under hard circumstances (they were hard standing in one place so please don’t tell me this is all because of travel–I feel better here than I did in California) and whereas sometimes I will do well… sometimes I will fail.

Perfection can’t be the only option or I need to kill myself because I will never be perfect.

Sometimes we need to fail so that we can learn a lesson. That means I need to be imperfect.

I think the way we have been handling school for the past two years was a necessary failure for us. I tried to live up to what my kids asked from me when they didn’t understand what they were asking. We all regret this. Maybe this regret is a necessary part of the process of learning about learning for us. They don’t truly want what they think they want. They are kids who have never been in school. They don’t even know what they are asking for me to do.

Her Sweetness is 13 months old. Over the next 5 months I will be able to pull away for longer and longer spans of time as she eats more food. Noah and I will have to find a way to each get more alone time. It may be that we trade weekend days off. Frankly we could each use a 6-8 hour stretch once a week where we are not responsible for working or doing anything to interact with our kids. No shopping for the family or doing laundry or medical care with that time. But we aren’t there yet. #goals

One of the things I am enjoying the most about travel is seeing the animals. The different birds (I have traditionally felt very confused by people who traveled to look at birds, but they are actually quite interesting? I baffle myself.) and reptiles and mammals are so cool! I could not fucking tell that was a real crocodile. I thought it was a statue. Which is why my stupid ass does NOT APPROACH WILDLIFE. Seals came up on the beach right by where we were swimming. I have had sea turtles bump into me in the ocean–the babies seemed super curious. I have seen crabs that range in size from about 2″ tall to about the size of Middle Child’s head. It is so cool that there are so many kinds and sizes. Cockroaches as big as my thumb (oh I’ve seen those before). Today MC and I watched a couple of birds have a knock-down-drag-out fight and I said, “Doesn’t that remind you of you and your sister?” He grinned sheepishly.

Lizards crawl on our walls (I think they get in through the hole where a fire detector is supposed to be… and isn’t… The ants are both super tiny, way smaller than we saw in California in our house and much much larger.

And yeah yeah, fish. Duh. Nothing brilliant or exciting looking. We haven’t been snorkeling or anything.

I just read an NPR article about Inuit parenting. It had some excellent points about anger. I feel that when I am on my game I am in this direction. I try. But I have a lot to learn.

It is hard learning how to give the exact opposite of what you got.

But… that’s necessary. Hard is not impossible. It is just hard.

Maybe if I write it down I can put it down.

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I heard the end. I kind of recognized it as it happened and I kind of recognize it in the rear view mirror.

I like doing things for people. I like feeling useful and valuable and like I am of service. It’s a pretty overly core part of my identity. Many of my relationships involve a lot of me doing work for benefit of other peoples lives. I like being a supporting character in your story. I love you and I want you to have a glorious story arc that has nothing to do with me. So I’ll show up and clean your house.

I’ll drive across state lines to unpack and repack you while you are too depressed and in pain to do it for yourself.

I’ll take you with me on major vacations, even to other countries.

I’ll buy a fucking time share so you can have the vacations you want that you can’t afford.

But when you spend a week ignoring me on the week that was supposed to make up for you ignoring me for a year and you turn to me and casually say, “Oh by the way I need to talk to you about using next years points for a trip with my family” that I am clearly not invited on….

I just because an ATM to you.

No. Done. Stop. No. No. No. No. No. No. No. No. No.

Nobody gets to treat me like an ATM. Especially not a rich white person. I don’t think so.

That right there is my line. I can see it very clearly. You stopped seeing this as a relationship where you have to give back. I’m supposed to keep giving to you no matter how shittily you treat me. No matter how much you cancel plans with me because everyone and everything else is more important.

It was a solid year of you canceling 80%. You wanted me holding time open for you so that you could cancel at the last minute. That makes you feel wanted and loved and connected. You could show up if you felt like it. I feel like you very rarely fucking prioritize me while expecting me to prioritize you greatly physically, spiritually, and financially.

Never make someone your priority when you are their option.

I wanted to be as important to you as you are to me. I was an important source of labor and money. You didn’t show up to be support for me.

You promised me that you would have strong relationships with my kids. I can count how many times you’ve seriously spent time with them in the last three years on my fingers.

Stop acting like I can’t track things and notice patterns. I’m not stupid. You make promises you won’t deliver on and you broke my fucking heart.

And you told me that you dropping me was all my fault because I got too angry. A lot of why I was angry is because you make promises and don’t keep them. So this cycle is all my fault.

Ok. I will step out of it. I don’t need to be in it. Then it won’t continue. Then it won’t be my fault. That is the power I have.

I know. It is never your fault you cancel. You are disabled. Hi. According to the very expensive team of people I pay I am disabled. And I am hurting myself by trying to show up for people who have no regard for me or my limits.

When will I decide that I am worth treating like a person of value? Because as long as I keep getting myself into situations where I believe I must stay in the relationship because I have known them for X time and I need them to stay in my life or it means I am bad and unworthy of having relationships…. that’s not a good dynamic. I should keep people in my life if I feel better about myself with the relationship instead of worse.

I turned hard to her when the cheating debacle went sideways. I was not allowed to pour myself into romantic relationships. I tried to have a major non romantic relationship.

It was never as major on the other end. I am very optional. That’s healthy! I need to… understand that this is very optional.

And stop picking the option that makes me cry. Cause hey dumbass, if you keep doing the same thing over and over hoping that someday someone will finally treat you well… fuck it. Move on with your life. There are 7 billion people. Don’t chase people who are going to treat you like an ATM. That’s not psychologically healthy.

Something needs to change.

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Ok. I’m in a cafe with music I like playing. I have my braces on. I need to be home in 90 minutes. Let’s see if I can defrag my brain.

I had a great therapy session today. We talked about the difference between PTSD and autism and how my various issues are compounding on one another. We went through which of my choices they were responding to last week (yes they were in fact biting their tongue to not say WHY ARE YOU MAKING BAD CHOICES) and why I am making them.

They are worried about Malaysia because a melt down there could have bigger consequences than in many other locations. That is a valid fear. But I have pretty good reason to think that I’m at risk if I melt down in a lot of places and I don’t honestly think Malaysia will be harder than a lot of other places. I believe that I will keep a lot more to myself. I will have to go rest faster because the consequences are extreme for a fuck up.

Why am I going? Because Noah was invited! How often is he going to be invited to a Muslim country? Probably not that often and I want to find out what it feels like in my bones. I want to taste the air and meet all the wonderful people who are living full and complete lives that don’t resemble lives I already know about.

The lack of medication is going to be hard. Sarah says I should get Prilosec and she’s not wrong.

But bigger than that trip is how we live our lives over the next few years. Sarah points out that I’m doing this thing where I completely deprioritize myself and I have done so while breastfeeding before. My shrink was adamant that my experience of decentering myself and my needs is absolutely board standard for breastfeeding parents. This hormonal soup is hard. But this is going to stay true for another few years and I need to manage my big kids. I can’t treat them like they are as important as an infant. Well… importance doesn’t feel like the right word. Their wants aren’t urgent. Their needs can be somewhat delayed without a problem. They are old enough that we should start having times when they come second or third and that’s healthy and appropriate.

It’s not healthy nor appropriate for me to always come in fourth or fifth place.

I am proposing a basic change to our schedule. I want to request that we all have one hour off in the afternoon without screens or the right to ask anyone for anything. No snuggling. No questions. Unless you are bleeding, figure it out for yourself for one hour. My big kids are 8 & 10. This is absolutely appropriate.

Also, we are talking about mixing up the order of our day a bit. Noah is not getting enough uninterrupted time to be creative. That’s a problem. I absolutely understand how hard it is to be creative when you are interrupted every 15 minutes for bullshit. His job requires near constant creativity. It’s not ok that we are acting like we don’t get to set boundaries with the kids. This is an extreme over correction.

I am proposing that I take over breakfast again and Noah work in the evenings after dinner and he gets to sleep in. That after dinner time is a great window for the kids getting predictable screen time (if they get their chores done) in a way that allows me to rest when I’m most tired. Noah is more of a night person and he likes those evening hours for creativity. My best creative hours are 4-8am. We are very different people.

I feel like we have been flailing and failing to create the structure that allows the kids to know what to do and when. I’m tired of having to be a jerk to get them off of the screen in the middle of the day. If they get the screen at 2pm, I am usually getting nasty to get them off for dinner around 6. Sometimes they tell me they don’t need to eat. That’s not good.

I am really struggling with how much my kids blow me off unless I get nasty and throw a tantrum. Everything short of that is worth ignoring.

I am not ok with this dynamic. It means I get to be an abusive bully or I get to be abused. Both suck.

I don’t want to abuse anyone. I need to learn ways to defend myself without being nasty and the last two weeks I have *sucked*

I am having a hard time setting boundaries all over the place and part of it is how worn out I feel. I feel like I’ve been massaged with a cheese grater. That’s not a great feeling. I’m exhausted. Taking care of a baby is draining as fuck. The whole first year is hard. I could seriously use a night of sleep and I am not going to get one for months. That’s hard to contemplate. My body has needs and those needs are not going to be met for months.

How do I find space for that? How do I find space to be gentle with myself as I cope with being pushed well past bearing? How do I find space to be nice to the most important people in my life?

How do I stop feeling hatred because I am so far past capacity I have nothing but hate left. That is the worst feeling.

I never want to hate my loves. But frankly, when I feel like I’m losing my mind… I do. I hate the whole world. I hate every person who wants me to think or interact or work. I get so tired and empty.

And filling my bucket feels so hard these days. I don’t even know what I need. I need time. I need to feel interesting. I need to feel like I have potential and worth and value. Not from working.

That’s so hard.

What kind of worth do I want?

I know I spend so much time on advice forums because I want my shitty ass life to help someone else have a better life. Not that my life is currently shitty. Past tense. I want to feel like the experiences and wisdom I have are valuable. Not because I serve you. Because it is wonderful that people exist who share what they know with the world.

I want to feel like I am more than a mommy/wife appliance. I want to be something that impacts other people. That is a big part of filling my bucket. I adore my family–don’t get me wrong. I don’t want to stop home schooling. I don’t want more space from Noah. I want to have a self outside of them the way Noah gets to but my available hours for such an existence is so small.

I need to take my writing more seriously and I feel like I have danced around that for years. I am so afraid of trying to be an authority about anything. I actively hide from being allowed to be authority.

Sometimes I wonder if my kids are disrespectful in the ways they are because they are learning from me that I’m not really worthy of respect. I sure act like that. But I don’t know. They are their own people and sometimes their behavior really sucks. Because they are people. Because they are kids. I don’t think they suck extra hard or anything. They are very normal. And I need to teach them how to treat me and I’m sucking at that.

This is tied into appearance stuff. I have to care more about how I look because I have to show people how to treat me. That’s so hard. I have been asked to leave businesses because I didn’t look good enough to be a customer. I’ve had the police called on me because I looked like a vagrant on the road trip. I am not imagining it that I ping a lot of “icki person” buttons for people and quite a lot of people are innately programmed to be mean to people they perceive as lower than them. It’s absolutely normal. And hateful. And cruel.

I remember when D told me years ago that if I don’t want people to be mean to me for looking bad then I had better do the work to look better.

The unstated implication there is I deserve the mistreatment if I don’t jump through hoops to be “pretty enough”. That feels degrading. I feel angry about this situation. But my anger doesn’t do me any good and it doesn’t change the fact that the world is full of abusive monsters.

This weekend someone told me that she thinks that something isn’t abuse if it is common/normal. I accept that she has this perspective. I wildly disagree. I used to know a woman who is part of a very specific culture. In her culture people with mental illness are to be entirely shunned so they don’t hurt the rest of the tribe. Guess what? That’s abuse.

If your community thinks it is ok for you to die because you aren’t good enough that’s abuse. Ableism is pretty standard in this country. It’s abusive. It’s normal for doctors to provide shittier health care to black women in this country. It’s abuse.

A great many traditional parenting practices are completely fucked up. I’m not going to get into them. Because shit I don’t want to argue. This is my opinion. You are allowed to have yours.

I need to create more space between me and my family so that I get to exist. Or I am not going to be able to be a healthy member of this family and that will mean that I have to go.

Ok. Time to create space.

The video game stuff. Ugh. Ok. So. When I say that video games are triggering what I mean is that when the topic comes up I am instantly full body flooded with adrenaline. I want to fight. I want to hit. I want to scream. I want you to get the fuck away from me before I hurt you. My early experiences with video games often revolved around people hurting me if I wanted to play. My body learned that this experience, this hobby, are not safe for me. Could I unlearn this reaction? Probably. With time, effort, and a lot of EMDR therapy.

Do you know what I don’t fucking care to pay for a bunch of therapy to fix?

My issues with video games. Therapy is expensive as shit. I can’t manage to fix everything.

When people are sitting around discussing their video games in a completely chill way I spend my time fantasizing about head butting them so that I can break their nose.

It’s not fun to be in my head through this process. Feeling this nasty, this angry, this much need to FIGHT hurts me. I feel sick.

It’s not fair for me to have to go up and down this roller coaster just because someone else wants to have fun. That’s not ok. So I finally said that I need that to be a boundary entirely. The kids are trying. EC asked me if she has done ok in the last few days and I told her yes.

My kids do want to be considerate. They just don’t always succeed. They are kids.

I need to teach them. And being a nasty bully isn’t the way.

And it also isn’t ok for me to have to beat myself in the head in order to accept what is happening me. That is also not ok.

Processing speed

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Sunday was rough for me. Something came up that requires me to set boundaries in ways that make me feel wildly uncomfortable. It maxed out my bandwidth for all boundaries and the day turned into a sobfest as I tried to borrow future spoons to cope.

I’m having this weird feeling of pride because I’m connecting the links in the chain rather quickly for me. There was a thing that genuinely deserves upset and a boundary response like dropping the portcullis. A thing big enough that I’m arranging for adult supervision of the boundary discussion. I need help.

Ok I had to walk around weeping for a day before I could cope with it… but that’s not a long time for me. I’m happy with myself.

On a completely different lighter more hilarious topic. I had a conversation with the kids yesterday about masturbation.

It started out with the word mastication, which I love. I explained how much I love using the word masticate when I talk to teenagers because it is close to the word masturbation and they always twitch in funny ways. My kids laughed as if they got why it was funny… then said “Uhhh what is masturbation?”

I’VE TOLD YOU BEFORE.

I said, “It’s sex with yourself. It’s when you touch your private parts in a private setting.”

“Ohhhhhhhh, that. Oh of course I do that.”

Then my children proceeded to tell me about when they (separately) take the opportunity to go in a room with a locked door for a while. I tried so hard not to blush or look awkward or bug out my eyes. I said, “It sounds like you have figured out how you want to handle this.” The kids nodded and smiled peacefully.

We did not get into any other specifics. I’m good with knowing that you know how to arrange privacy and you know to wash your hands afterwards.

My work here is done. For now.