Tag Archives: living with disability

Keep resting

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It’s weird having a 16 year old. In many ways it feels like I should have this person basically cooked and ready to be an adult. Yet sometimes it is glaringly obvious that he still *needs* me. I’ve been antsy during this surgery recovery. I really *want* to get up and work/exercise more. I am struggling with the bullet train inner monologue of “If you sit around all the time you don’t deserve sympathy/help for your health problems. You aren’t looking after yourself so you deserve every bad thing that happens.”

He’s been talking a lot about how scared he was when he watched me have massive life threatening bleeds after surgeries. He’s kinda fucked up about it.

I am currently in the period of time where a normal person *should* return to exercising.

I am still experiencing pain. I am now in the window of time where I normally start to push myself.

Then either my skin opens or a blood vessel bursts. It’s part of a genetic condition. It’s predictable. Especially since it’s happened *in my body* several times. It’s not paranoia. It’s awareness of risk.

This is where “invisible disability” stuff is hard. It’s hard to predict and make general statements about. It’s hard to exist in a way that allows people to understand when you do and don’t need help that is friendly and kind and gentle enough that they don’t get mad at you.

Social anxiety at 11.

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I’m not doing well with people. I am grateful I have an excuse to hide in my house. Being around people feels like a horrible thing I’m doing to people. I feel deeply inadequate. I am upset that I managed to wreck one of the friendships I put the most effort into over the past five years. I am really sad that I managed to make myself unwelcome in the first vanilla community I tried to join. It is making me feel intensely more alienated and wrong.

This kind of thing is what comes up in my head when I think about myself as being bad all the time. I’m in my mid 40’s and I still don’t know how to act well enough to not get chased out of communities. That sucks.

I have a deep need for community and friendship that Noah doesn’t fill. He’s great but he’s one person. I do have a few friends here but I don’t feel welcome in the community. I am not assimilating that well. Shocking, I know. I don’t feel very likeable and it means I’m not feeling like I can or should go to things when I know the host would like me to come. I worry about inflicting myself on the other guests. I don’t want people to feel like they have to interact with me when they don’t want to.

I’m scared of the event in October. I’m going to have to manufacture a giant pretense of self esteem and confidence and right now that is sounding terrifying. I am not feeling very good about myself in ways that are hard to ignore. I’m feeling deeply unworthy. I am too high in cost and too little in return. I am a net loss.

This feeling makes me want to hide in a closet under a pile of blankets. I take extreme comfort from the knowledge that Noah thinks I am absolutely worth all the effort he puts into looking after me.

I can’t need anyone else. Just Noah. So when I feel like I do right now, where I am just a bottomless pit of need and fair I sit in a room by myself because I have nothing to give. If I have nothing to give then I need to be alone. I am a net loss when I am at full capacity. How in the fuck do I justify all that cost when I have so little value to anyone outside of my house?

I will get over feeling like this. I have felt this way before and then I stopped. I know that will happen again. It’s just going to take some time of being alone and trying to regenerate any sense in myself that anything I am or do has any value at all of any kind to anyone other than myself. I wish I had more of a sense that I just deserve to exist because of me because that is enough but I don’t.

I am deeply driven by collectivist and friend network building urges to amass a feeling of family. The trouble is, I am always too high in cost for that. It is what it is. I just don’t know how to shave off enough parts of me to cost less for people.

There is a void in my day.

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I’ve been talking to TB all day every day for four months now. It’s been really amazing. I have enjoyed climbing into his brain so much. Now I understand that doing so is going to block him from finding the future he wants and I have to stop. That’s hard. I feel like I am punishing myself.

I don’t say good morning and good night every day to anyone I don’t live with. That’s a lot of pressure for me. I’m a forgetful person. I have a lot of friends. I haven’t had a “we talk every day” friend since the Bonus Mama. I think I lost her in 2017? I feel absolutely allergic to the idea of having a friend I talk to that much ever again. I don’t trust the dynamic at all. If I talk to someone everyday for a couple of years then it is agonisingly painful when I am rejected because they don’t want to anymore or they found someone they want to talk to more. I don’t handle that detransition very well so I need to ensure that I don’t start that expectation within myself.

I have more abandonment issues than there are grains of sand in the Mojave. I maintain long-term friendships by making sure I never ask for or expect too much. I have to keep my needs to myself. I can share wants with friends easily, needs are harder. I have to be truly desperate before I will ask for help with a need. I would far rather do without or hurt myself doing it alone.

It’s why Noah works so hard at under promising and over delivering. He makes sure his actual promises to me are very conservative and easy to follow. He’s kind like that. He has learned how to be kind to me in this way.

I rarely worry about being too much for Noah. Today I was standing about 100m away from him; I was waiting for him and the kiddos to come in my vague direction. He ran over to me so that I didn’t have to stand alone. There was no reason to run. The kids were playing and having fun. He just wanted to. He didn’t want to be away from me for a second longer than he had to. He’s set the bar so high that other people can’t match it and maybe that’s ok. It sure makes the prospect of poly kind of weird. Someone has to treat me at least as well as Noah does or I am *choosing* to be less well treated every moment I spend with them.

I still believe with my entire soul that there was the potential for a life changing relationship with TB, it’s just not what he wants for his life. That’s ok. I really understand choosing hypothetical children over certain not quite enough. It’s a little funny because I don’t get told I’m the one who is not enough very often. It is fitting at its core though because I never pursued TB in the first place because I assumed I wouldn’t be good enough. Also, he’s nothing like Noah and I need Noah like I need oxygen and water.

TB fills needs I normally don’t even see in myself because they are so buried. I will go back to burying them because they are not things I can fill in my life with my current set up. It won’t kill me. These aren’t food and water and shelter kinds of needs. These are emotional needs around stability and being loved without being hurt. Noah is absolutely amazing and he loves me madly and deeply, but there’s a lot of hurt. I’m not complaining I am acknowledging.

I almost got to find out what it is like to be loved and cherished by a partner without having to endure pain to deserve it. I came really close but this is neither horseshoes nor hand grenades. It was weird seeing the possibility of finding out what that is like. It seemed alienating and impossible and improbable. Turns out I was right. That is not for me in this life.

It is breaking my heart. I wish I had never considered the possibility.

The fucking worst part is I had a hideous thought that makes me feel sick. “Since I am not a suitable partner on my own, maybe I should abort an accidental pregnancy.” I have never tied anyone to me through negligence and I will not start at this stage of my life. Elsenet I have recently done a copious amount of writing about how absolutely not ok I am with the possibility of aborting a child. Especially a fourth child. Especially an unwanted fourth child. I am the fourth unwanted child and I should have been aborted. I will be very careful and not get pregnant. I’m good at being slutty without accidental pregnancies. I feel bad inside myself about myself that I would have such a thought. I would never force someone to be with me. He’s made it clear that I am not enough. That would be true with an oops child in the picture. God that would be so unfair. This particular bit of calculus is why I’m going to have one sex filled trip with him and then not see him again. Apparently there is a hyperfertility uptick during perimenopause. My chance of getting pregnant is higher than it used to be.

Naw. Not playing with that fire a bunch over the next few years. That would be looking for pain.

Why one sex filled trip since this is not going to turn into what I wanted?

I feel like I will think about this and decide over and over and over for a long time. All the way till January. 18 weeks and 2 days. As long as we courted. As long I poured energy to trying to figure out if we could be good for each other as more than friends. That’s a good thing. That gives me time to get over feeling butthurt and go back to being excited.

I get to bang someone I have wanted to bang for 25 fucking years. That’s awesome. I’m looking forward to it. I think it is still going to be tender and sweet and loving. He is my very dear friend and we have both nursed a simmering crush all this time. Being incompatible isn’t something that either of us have done to the other. We are still good people having a good friendship with deep admiration and respect on both sides. It just so happens that I also like having sex with friends. At least I used to a long time ago in another life. I’m not so big on it here in Scotland. I am freaked out by the idea and I can’t consider it.

I feel scared about the amount of fall out that is going to be the result of this failed courtship. I would still like to do some fun travel things with him as just a friend. Maybe I am hoping that the sex is unimpressive so I can get over wanting him. That is the result after sex with quite a lot of people. Most people are not that skilled at sex and sometimes I am not up for the amount of work involved with ensuring I have good sex with someone who isn’t all that good at sex. I can do it. I can push just about anyone through having sex with me in a way that will get me off acceptably; I am both easy to get off and very skilled at directing sex.

I have very strong feelings at this point about the trip. I am not ok with “let’s see what happens”. I am going to direct this very much. I am going to go in knowing what I am trying to get out of each separate encounter. I feel bad, but I’m basically setting up how I can ensure a just and equitable transaction of emotional and physical energy. I’m not going to give more than I get. Oh fuck that.

Nope. That ship sailed away on de Nile and it ain’t ever coming back. I can’t get back on that river again. I will not put pennies in a piggy bank I will never be able to withdraw from. I’m a selfish cunt and I am not running at a surplus in my life. I now need to be a lot more fucking honest with myself about the cost I pay compared to what I am getting back. Is it enough? What do I need to do to make sure that I’m not bleeding out? I can’t have any fucking holes in my bucket and pouring energy into someone who is that actively encouraging me to invest, while planning to walk away suddenly at any point, would put a giant hole into my bucket.

The amount of hurt I feel today is 1/1,000 of what I would feel in two years. I might have started to trust that I was going to be kept come what may. I would never try to keep TB from finding a different primary if keeping me as a comet/distant secondary was a priority. It isn’t a priority for him. I can’t invest more emotionally in someone who will drop me like a hot potato for monogamy. That’s acting like it’s ok to treat me like a resource to use until something better pops up. I will not let my friend treat me so shabbily because then he would have to carry the shame for doing so.

I think at some point along the way this sounded more ok to me? I think there have been too many statements about “for the rest of your/my life”. I can no longer put any trust in the words that are being said. They are not at all reflective of reality. They are things you sorta hope might come true but it’s not a serious priority or demand upon any future partners.

Maybe if I didn’t have that Mojave Desert sand depth of abandonment issues. I’m not securely attached enough in my own self to withstand the level of pain I would feel at being discarded later. That would totally fuck up my ability to parent/teach well. I can’t set my life up for that crashing pain to come down on my kids. That’s fucked up and unfair. I can’t compartmentalise well enough for them to be totally unaffected by my mental state. I have to take steps to increase stability, not make choices that make instability more likely.

“You can depend on me. I will always be there for you.”

Those two sentences really should get me running in the opposite direction as fast as I can run. Usually when someone says that I stop hearing from them soon after and then I never speak to them again. It’s a fucking death curse for my relationships. No, I can’t depend on people. No one will always be there for me. Not even Noah. Not because Noah is shitty or because he doesn’t try hard; life is fucking brutal, dude.

I had very large problems before I ever met Noah. They haven’t all completely gone away despite all the work that we’ve done. Some of these are chronic and permanent. I don’t have a choice. I am always going to fucking struggle. I do stuff for myself long past the point when someone else would complacently accept help. I will fucking cry the whole time I hold a fork but I will not allow myself to be fed. I will eat the food like a fucking dog before I will allow someone to feed me when my hands aren’t working.

I have a lot of big feelings about the increasing disability I am experiencing. I wonder if part of my freak out about TB is I’m well aware I’m going to have slim pickings for folks who want to date me as I get older and more disabled and a lot less rich. Given the reading requirement involved in dating me I might be deciding that I am theoretically poly but I never get around to it. I am fucking difficult. Lowering the admission bar would not improve the success rate, it would make it worse.

95% chance of flaming out before 6 months. I’ve got statistics based on a significant enough sample size that I can use percentages. Yup.

I am difficult and demanding and exacting and way happier being alone over putting up with bullshit. I also have a husband who acts like I hung the fucking moon. I am not in any way deficient in sexual attention.

I spent four months helping a friend learn how to have a variety of adult relationship conversations that he otherwise would have had difficulty with down the line. I can’t call it mentoring because I sure as shit did it with the plan to fuck him. I made sure this vanilla monogamous person was going to be making a well informed decision with regard to the risk involved in being in a relationship with me. There are lot of implications to joining my life. It exists in a lot of layers and either you are in it or you are someone I talk to sometimes.

I’m not being mean. I have to keep walking. No matter what I feel or what happens to me I have to keep walking until I can’t walk anymore and then I will fucking crawl. I will fucking horrify the NHS because I’m not going to ask for help until it’s pretty ridiculous. They will scold me for not calling them in sooner to help. After all I am entitled.

I don’t really believe I am entitled to much in this life. I have acquired much. I am doing what I can to make this house into a place that will survive for a generation after me before needing more significant repair work. Sure, someone will probably paint over my art. I know. Deep sigh. My kids will have a secure home from which to figure out their lives. I’m not promising to make them rich enough to not need jobs but they will be able to survive without assistance from the government and without needing a job like Noah’s. I am planning as hard as I can for a future where we don’t need that kind of money anymore to be ok. I have been paying Future Us hand over fist in a variety of ways that will outlast me.

I think our days of regular, unplanned, expensive travel are over. I don’t think we can come to the weddings. If Noah hadn’t lost the last big tech job, sure we could have done all of them without a problem. We would have been on track even with the bulge of unexpected financial loss. Now he hasn’t worked in six months and it looks like his next job will be pretty much exactly how much we need to live on and we will no longer be contributing towards retirement. Awesome. That’s with a lot of cutting out expenses in terms of “what we need to live on”. I’ll need to cut expenses by 50%. I’m going to be fixing less on the house and at a much slower rate. Good thing I already got most of the biggest ones done.

Was I so intrigued by TB because I am an asshole and I wanted help fixing my house? It’s not a 0% chance. That takes the air out of my balloon in terms of being indignant about him not wanting me. Am I mad about the benefits I won’t get? Don’t get all self righteous here, Krissy. Sure he wants to keep getting the emotional support benefits without the commitment. Are my motives actually only pure and altruistic or some bullshit like that?

Probably not. I’m a selfish cunt. Yo, brutal honesty dictates I say that I was frankly concerned about the mismatch in physical size for intimate matters. That was going to be a difficult thing for me. Combining that mismatch with the other disparities in sexual preferences I wouldn’t be getting so much out of the sex that it would fill up my end of need for emotional support.

I have a high opinion of the value of the support I offer as a partner. Demanding high return support in exchange has historically resulted in my life steadily improving and me having increasingly healthy and positive relationships.

I feel weird about that kind of a statement right now. It feels like a pie crust promise. It feels like a big claim without evidence. I don’t jump into bed with everyone I want to be friends with because it’s the primary way I know to get people to like me. It’s been more than 8 years since I’ve had sex with a friend. Holy moly it is the longest stretch of monogamy in my life. I think twice as long as previous stints? Why do I want it to end so much?

I have a narrow window. For one week I will have a travel boyfriend that I will have a lot of fun with. I have negotiated it painstakingly with my husband so that I can be as respectful as possible of his feelings through this whole experience. I think Noah will fall in love again some day. I think he will have friends he wants to have sex with. I have some hope about my ability to send him off for adventures with a big smile on my face. It will be a lot easier to do when I am not feeling constant anxiety about when TB will be dumping me. Noah and I will keep negotiating and talking. We will make friends slowly and not go out hunting for strangers/near-strangers here.

I have a husband who will give the full measure of devotion in service to my safety, health, and longevity. I don’t get to feel actual bitterness about not being so sparkly and shiny that I get to have another serious partner who is nearly so devoted. That’s a big fucking ego you have there, Krissy. Really think a lot of yourself, do you?

I guess I do. I think I need to be honest with myself and with anyone who ever tries to date me that I don’t accept inconsistency. Do not make pie crust promises while asking me to trust you. That’s not something I can work with. Know your own mind. Think about your shit. Figure out what you want. If it isn’t me then don’t waste my fucking time. I have a short life. Trying to prevent me from spending my time in ways that will build towards my long-term future is absofuckinglutely disrespectful. As I will try hard not to waste your time. It’s about respect.

I’m disabled. What I can get done in a day is distinctly finite. I have bursts of time where I overextend on a project and get an unhealthy amount done. I always pay in big and small ways.

What I do with my time is a big McFlippin Deal. Time is my most scarce resource in this life. I will be spending the vast majority of my time with my family. If a person does not particularly have any desire to integrate with that unit then they need to be a person I talk to sometimes.

I don’t have enough self to give to be doling out big chunks to a bunch of off-stage people who are not actually part of my life. It’s just math. It’s pragmatism. It’s reality. I need to treat people as not good matches for me when they are happy to use a lot of my time with no regard to the effect that has on my ability to live the life I want to lead. If someone does not notice or care about the holistic reality of my life then I need to keep them in a small box away from my life where I limit how far down the rabbit hole I go.

I need to believe that I deserve a good match. There is a void in my day right now because I want to be poking TB. I don’t want to though. I want to be poking in the direction of a fantasy I had, which isn’t at all the same thing as poking him. I want to be poking at a partner who is doing work to making themself better actively like I am to remind one another that there is fun in trade for the hard and the boring. “Hey asshole, poke your husband.”

I do. I poke and prod and talk to him all day long. I have a lot of RAM in my brain. Once he gets a job I won’t be able to take up all his time like I have been doing. Holy cheese I’m looking forward to retirement. I could keep more people busy. God I am a bottomless pit of need. I don’t want to do it for someone where I don’t get the long run benefit of nipping at their heels to get them to run just a little faster. It’s a lot of fucking energy.

The trade value for my time as a girlfriend experience is quite high. It’s not your soul but it’s pretty close.That is probably a highly inappropriate amount of hubris. Oh well. The down side is less time spent with people who don’t want to put much energy into me. That doesn’t sound like a down side when I say it like that. It kind of sounds like healthy self regard.

I don’t have a lot of unrequited loves left to come knocking. I think the ties of the past are finally fraying. I think that going forward it’s going to be a very weird process. Good thing I am primarily interested in making friends. That is a worthy endeavour and I strive to not have a lot of standards and demands for friends. Friends are free to be whatever kinds of fuck offs they want to be. It doesn’t impact my life too badly because of boundaries. I keep people in small boxes.

My standards for Noah are shockingly high at this point in a lot of ways. Very low in other ways. I don’t ever get to expect my birthday to be a good day for me. The most peaceful birthdays I spend alone. I don’t have expectations of anyone that way. I don’t have to take care of anyone. I don’t have to carefully monitor my tone to ensure that I am being respectful even when I feel shitty. My birthday is not a day that is good for me. TB has long since proposed me spending my birthdays with him.

He offered to be the one who made sure my birthdays are special while planning to dump me if someone better comes along.

I’m 10 days out from my birthday. I am glad I am downgrading my expectations in my mind from “boyfriend” to “friend with benefits”. That means I can stringently avoid getting myself into a situation where yet another person makes my birthdays feel full of memories of not being wanted or good enough. Fuck. That really fucking hurts. That’s not a small thing to offer. I refused it instantly. No. I couldn’t do that to Noah or the kids. They would take that very personally. I can go away with Aunt Jenny and everyone wishes me well with a smile.

If I am going to get back to interviews then I need to get my sleep schedule under better control. Good night.

We’re All Mad Here

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The monsters under the bed

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Sometimes you get cocky. You think, “Hey the monsters under my bed haven’t come out for a long time. Maybe I made friends with them and they decided to leave me alone as an act of mercy. Maybe they died of natural causes. Maybe…. one of the many chemical warfare bombs I threw under their killed them. Maybe.”

Then something happens. Maybe you knock a glass off your bedside table and it shatters on the floor. Maybe a support plank in your bed gives way and makes a loud creaking sound when you move. It might be a big sound or it might be a small sound. It really doesn’t matter. There was never much sense behind the monsters coming after you anyway. They have their own agenda.

So you step lightly off your bed expecting to walk peacefully off to the bathroom to brush your teeth.

Even when they came out often you never really learned how to hop off the bed fast enough and far enough away to get away from them. Their arms are so long. They can grab you so hard and pull you so close. Their teeth when they bite you are so sharp–so terribly razor sharp. Their teeth are a bear trap. If you move very much you are going to tear the wound and make yourself bleed out. Instantly your stomach fills with the sharp, acrid, acidic, burning poison of fear.

You are always so terribly terribly afraid that even if the bleeding doesn’t kill you first your body is going to produce so much acid that you will destroy yourself from the inside. You’ve been so close in the past. The acid burned holes in you so that you could barely eat, barely sleep, it burned through the tissues of your body making terrible pain absolutely everywhere.

You will never, ever forget that pain.

So when it starts you have to first go very very still. So still that you calm down all the way to the atoms of your body. So still that it feels like if you are not careful even this paralysis might kill you. You have to slow down enough to figure out how you are going to get help.

You can’t be casual about getting help. If you ask the wrong person they think they can toss you a screwdriver or a metal nail file and tell you to pry it open yourself.

You are stupid. If the only tool that you have to hand is one that will poorly break open the seal and probably slip sideways in the blood and cause you to damage yourself even more terribly… you will use it. You are scared and you are hurting and thinking is almost an impossible task. You are desperate. Thinking requires so much will. So that first decision, “Who can I ask for help?” is maybe the first, last, and only time you will be able to think.

You have to make sure that you carefully only ask for help from people who have the right tools in their toolbox. People who have experience with this kind of atrocity. People who will neither flinch nor minimize the severity of the wound. Probably these are people who climb out of their own beds very carefully because they are currently at a détente with the monsters under their own bed. They know deep in their bones what is at stake if they fuck up.

Make no mistake, that monster wants you dead.

If you choose very carefully and you manage to pick wisely and your dear, wonderful, important friend helps you to get the trap open that doesn’t mean you have to cling to them for all of the healing. They can pack up their tools and head back on their own journey. Someone else will probably be along soon and bandages and medicine are so much easier to get help with.

It’s getting the damn trap open that usually sinks a person. That moment is do or die. That moment decides if you will have more moments. That moment when you go quiet and you pull yourself in and you weigh carefully exactly who you can ask…

It’s everything.

You had better hope you made the right friends. You had better hope they have their toolbag with them when they happen to hear your call.

Sometimes you get lucky. You can limp away. You are reminded that you did not actually kill the monsters. The war is not over. You will have to keep fighting.

But for now you can rest. Rest and heal. Be grateful that you made the right friends. Be ready to help them with their own monsters when the need arises. Because as sure as the sun will rise those monsters are going to keep trying to kill you all.

I do like to do things in contrary fashion.

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In the fall I painted spring. Now that it is spring I am painting autumn. I like to buck trends and all that. I have started on the upstairs hall. The upstairs will be sunset and the downstairs will be early dawn–I want to keep a lot of the soft pink that is currently downstairs.

Recently I was doing a video chat with an old friend and he said, “Why do you have a besom on your wall?” Because I am a witch, naturally. I think of my art as being part of how I try to change the world. It is how I try to change people’s perceptions and emotions. I am drawn to witchcraft because I believe that people have power and they should use it. Power manifests in different people in various ways and you need to figure out what your way is. I am blessed with having many ways that I influence people and I take that seriously.

For now: it’s in a hallway. I am going to do this mural with more limits for the sake of my body. I’m trying to respect the fact that I’m growing old. I got in two hours to start with so far. This one is going to take months because I am getting ollllld. I can’t upload pictures without wordpress being bitchy so I guess I won’t post the pictures here.

Drifting

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If I didn’t feel so afraid I would have a lot to document. Life is being quite eventful but I feel like talking about it will cause problems that greatly outweigh how stressful it is. This is the least therapized my life has been… I don’t know, ever? I’ve been pulling back from my US friends. Not because I love them less but because I am utterly exhausted and weary and pursuing them takes enormous energy. I’m not able to put much into creating new friendships here in Scotland. I’m trying, but it feels like swimming uphill through a river of molasses.

My body feels so desperately tired. I’m sleeping a ton–that’s not like me. I’m sleeping 8, 9, 10 hours a night. Historically it is difficult for me to get more than 7 hours of sleep. After these longer stretches I am so weary getting up from a chair feels like a struggle. Is this a deeper manifestation of depression than I am used to? Is this the result of still healing from surgery? Is this trying to actually unwind from the years of anxiety in California/traveling? I don’t know but I feel existentially exhausted. I feel empty.

I don’t know how to fill my bucket. I want to feel more whole. I want to feel like I am thriving instead of treading water to survive.

It’s hard that I am not cleared to go work with plants yet. It’s hard that I feel like I’m not allowed to do much. I’m still in the “spending money to get established” stage (we don’t have enough bed-sized blankets… we have a ton of baby blankets though…). We found some teeny bugs in the food storage area, so protective containers must be acquired or we risk food spoilage. Not stuff we can just not buy. I mean… we could burn more oil keeping the house hotter. That’s penny wise and pound foolish.

There’s a lot I wish I could document for my own sake. But pieces of it aren’t my story to tell and I am deeply afraid of the consequences for other parts.

So I don’t talk much about how I’m feeling with my voice and I write about it even less with my hands.

Is this bone deep discomfort how other people feel? Finding a therapist isn’t really an option for a variety of reasons. Living here may mean that I am permanently out of therapy for a variety of reasons. Well, unless I pursue a degree and it becomes a mandatory part of my job. Wouldn’t that be a funny reason to become a therapist? It’s a way to make sure I have to be in therapy too?

I think a lot about the massive waiting lists in this country for mental health support. I think about what it meant when I was a kid that I had help even though some of it wasn’t the best. It was a lot better than nothing.

Comparing one’s life to other people’s lives is such a complicated and tricky thing. Sure, other people may have X, Y, and Z that you don’t have… but they also have A, B, and C that you don’t have and would you really prefer that balance? This isn’t a fence with one side or the other. It’s a grid with many many many different squares and balances and problems.

I like that often every ends up in my room a bit before bed time to curl up together and read. MC has decided to read Tamora Pierce books. They are a bit above her reading level, but if she sits close to me and asks for occasional help with words she is making her way through. She absolutely loves them. She is stunned that even in a magical temple school there is still bullying. Yeah honey… people jockeying for dominance is absolutely universal. That’s just life.

Today we have our first health visitor experience to check on YC’s growth. I have two doctor appointments next week: a pap smear and a trip to my GP to go over genetic testing results and talk about next steps for EDS assessment. I get the impression that beyond the genetic testing (that’s super fucking expensive to run) Scotland wants to rerun all assessments because they are not interested in foreign medical records. That’s going to be interesting. At least I have the results of 35 years of forcing my way through the US system like a determined train to use as a guide.

My hands hurt really badly. I am trying various handicrafts because I’m bored as fuck. Arthritis is going to be my forever nightmare.

I feel like a fucking whiner. I am definitely in the “but you don’t look sick” camp but my body is degrading really fast. It’s hard feeling like if I don’t talk about how poorly I’m doing I just look like a lazy lump but if I do talk about it I’m a whiner. I’m not lazy; I’m in pain.

I’ve gained weight again. Ha. Good thing I bought my trousers so large.

It’s time for a day.

Anxiety management

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Yesterday I was told that I have three months ahead of me where I am on restriction for arm exercises. That means no yard work until May or June. That means when the bookshelves finally get built I shouldn’t put books on them. That means I really shouldn’t be doing so many house chores.

It’s time to hire a house cleaner and I feel really upset about it. I hit that level of disabled and I can’t expect my family to carry my weight of chores on top of their own for so long. Not in a house this size.

I did a big batch of cooking a week ago and my hand is still swollen. I have to buy and get into the habit of using a food processor. My arthritis is that bad.

I am not feeling good about my body, my self worth, or my general competence. I feel pathetic. I feel like I am seeing my usefulness as a tool slip away.

I was cleared for riding a bike and for going out and doing walks. The doctor was quite firm that I must not pick up my nearly-two year old at all and pushing a pram is… not really wise. I can’t swim but I could supervise my older children swimming.

But I can pull her in the bike trailer and attaching the trailer to the bike is dead simple and no real strain. So that’s something.

I feel absolutely horrid about myself. All of the things that make me like myself are falling away and I am left with the bits I despise.

And that means I want to get into stupid arguments on the internet over paper plates. I didn’t. I walked away. I know it is a stupid control issue. I am anxious as fuck. I want to be stupidly defensive of my choices and there is really no point. It doesn’t matter if this stranger agrees with me or not. I did what I did and… there is no value to arguing. I am not going to live how they live and I don’t need to argue about it.

I feel stupid and useless and I want to not feel so bad about myself. I won’t get that from stupid arguments about consumer choices.

I’m not sure I am going to feel better about myself from anything this morning.

Reevaluate everything

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I don’t really know what I’m doing as a parent. I read things, lots of things. There are so many opposing opinions on literally everything. So I try shit out and then I talk to my kids about how it is going. In the long run their opinion of my parenting is the only metric I care about.

I asked them last night if they think getting paid for chores is motivating them or taking away motivation. EC eloquently said, “Well, on weeks when I don’t need any money I don’t see any reason to do chores.” So that’s not super helpful. I asked if they think paying for their own stuff is helping them feel like they are more responsible with how they use up products. They said that part is working well.

We also renegotiated their pay for babysitting because that’s different from sweeping and tidying. They did some practice on how to state how they have increased their responsibility (closer to babysitting rather than just being a good playmate who distracts YC while I have to do all the ‘work’ stuff) but they still aren’t ready to be fully independent about it. We talked about what adults/older teens get paid and what sorts of qualifications those people have that my kids lack. I did this same sort of process with their former babysitter. How do you negotiate for pay increases, how do you talk about your increasing level of responsibility?

It was interesting listening to how they have no real interest in renegotiating what they get paid for chores because that has an opposite effect on their motivation to do the work, but babysitting is different. If I were to guess about why these things are different (I don’t know for a fact I can only use conjecture) chores are things they are doing in preparation for being an adult and it’s part of being a citizen of the household. Babysitting is different from just playing with their sister and being part of a family. It’s exhausting in a different way and they are doing this training partially so that when they get older they know how to advertise their services to other people. Neither of them anticipate a career in janitorial services, those are skills they are learning for themselves.

That’s my guess. But I could be wrong.

So we are going back to a flat allowance for most chores with the exception of babysitting. The first five hours/week of babysitting is payment for their cats since they don’t want me to feel like I own the cats. They get paid over that threshold. So technically their pay can still be variable, but frankly most weeks I doubt they will do more babysitting time than the basic hours.

It means that each big kid will do a couple of hours on a weekend day with their sister and then an hour most week days. I will get to rest more.

I’ve tried creating this with adults for pay. I signed back up with Care.com and the like here in Scotland. I have ads. I’m looking for support! I’ve sent messages! No bites. I’m not sure what it is about how I advertise that makes people have so little interest in working with us. Ah well.

I might get to actually date my husband again one of these years. Woo.

MC’s “babysitting” is still at the level where I have to be available to provide food and nappy changing services but she’s getting really good at playing with YC for a while if I have chores I want to do. I think EC is at the point where Noah and I could disappear down to the apartment for a few hours. I still wouldn’t feel comfortable leaving them alone in the house as a regular thing.

EC did take care of things when my wound popped open. Getting a taxi for 5 is… hit or miss. Sometimes they send an adequate vehicle and sometimes we have to send back a smaller car and wait for a bigger one. So she stayed here for two hours with YC while I got stitched up. I am grateful that we now have that level of assistance, but I don’t really think EC feels ready to take on that level of babysitting on a regular basis.

Babysitting usually means Noah and I get to be in our bedrooms with the door shut for a little while. So we have half an ear out for stuff we need to mediate, but we get to do something without toddler “help” for an hour or so. It’s a work in progress.

We are all just works in progress.

I do these kinds of negotiations with my kids partially to model for them that relationships are not static. You try something and if it isn’t working you can change it. Just because you agree to try something that doesn’t mean you are stuck doing it forever. You are allowed to grow and change. You really should change over time. And it’s hard to figure out what should change when things aren’t working; sometimes you need to throw stuff at the wall and see what sticks.

We are talking a lot about what we want from home schooling going forward. I’m doing more research because that’s my place of comfort. I’m looking into what the exams are like in secondary school. When do they happen, what do they mean? How do we prepare for them in a home schooling environment?

Well, me screaming about them not working hard enough… that needs to not be part of it. MC is just to the age where I started sitting on EC really hard to force her to “catch up” in a few subjects. Turns out I didn’t make her catch up to grade level I made her get way above grade level but I did it at the cost of both of us being miserable for a long time. I need to learn from that mistake.

Why is it that people who beat the “handwriting is important” drum think they are being the voice of dissent and advocating for The Most Important Life Skill? You aren’t the voice of dissent. You are literally parroting The Man and being as fucking basic as possible.

But the exams here all handwritten. So my kids need to practice for that. I get it. Just, ugh. Don’t act like handwriting is the measure of the anything other than the ability to jump through an arbitrary stupid hoop. It is not the measure of intelligence or knowledge or wisdom.

My mother’s handwriting is exquisite. That hasn’t helped the woman get a good job, ever. My handwriting is shit and the only thing it ever cost me was a masters degree. I still got the pay raise associated with the masters degree in my career of choice. I still have never had difficulty applying for any work I’ve ever wanted to do. I didn’t want the career that a masters would enable. I wanted the knowledge so I could be better at the career I was in without having it at all.

Just… ugh. Why in the fuck do handwriting advocates think they are so… revolutionary? “I’m going to be the voice of dissent that happens to agree with every bureaucrat in existence.”

Like, really? Voice of dissent here? Come on now.

Oh… you were just trying to say that if there are disability related reasons that handwriting is a problem I should not seek out accommodations because who gives a fuck about those disabled kids. Right. How very ableist of you. One of the fucking diagnostic tools for EDS is difficulty/pain in holding a pencil. Our god damn joints don’t stay in place to hold the pencil the way it works for other bodies and we can end up with permanent fucking pain.

That’s not the “voice of dissent”. People have been telling folks with disabilities to suck it up since forever. But sure. Keep feeling superior over there. What was that you said? You don’t have a job and you need to go back for extensive training to get another one because your qualifications lapsed? I guess all that fucking handwriting you did wasn’t enough to save your ass?

Sure. Keep telling me about how handwriting is The Way, The Truth, and The Light.

I’m clearly frustrated with someone. But yes, I know my kids have to work on handwriting. Even if it wrecks ECs hands she has to do it anyway.

THE FUCKING VOICE OF DISSENT HAS SPOKEN.

“It is no sign of health to be well adjusted to a profoundly sick society.” – Krishnamurti

Sigh.

If you look up recommended accommodations for children with EDS, “eliminate handwriting grade and substitute grades for content and effort” is on the list.

Sigh.

We’ll figure it out. I’m just frustrated. People are challenging.

Complications

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I had the stitches out yesterday from the surgery I had on the 31st. Then the wound popped open and I had to go see another doctor to have the giant gaping wound restitched. Apparently that’s called suture dehiscence and it’s common for folks with EDS. I’ve been doing research this morning. Apparently EDS means I should have had my sutures left in for twice the normal healing time. I am going to figure out how to get a bunch of research on EDS to my medical team. I mentioned on the operating table that I have it and the surgeon said it wouldn’t matter.

My kids were understandably pretty freaked out. MC told me she had an unhappy tummy when she thinks about the wound.

I said that being afraid of the wound is like being afraid of riding your bike. I am going to die someday–that’s the end result of being alive. You are going to fall off your bike sometimes and the only thing you get if you are afraid of it is that you can’t enjoy the time you are on the seat. I am going to die some day and my body has a lot of complications that I’m trying to manage so that I can stay alive as long as possible. My body has more complications than average and that means I have to do a lot of research and I have to advocate for myself because keeping me alive isn’t the same process as it is for other people. If we waste a lot of time being afraid of my eventual death we won’t get to enjoy the time I am alive.

This research is extra important because EC has the same condition and the more I find out about myself the more I can save her from suffering through similar issues. She can advocate for herself earlier and harder.

Now I need to figure out how to get this research to my medical team. It’s entirely from highly reputable/peer researched locations. I’m not researching on blogs (Even though blogs are often pretty fucking accurate) so I hope this is taken seriously.

I need to assume this will take twice as long to heal as “normal”. I need to have the stitches stay in longer than expected and I need to say that to the doctors involved in my case. I need to be proactive because I am the only person who suffers from these fuck ups. My back hurts a lot again today. There was partially healed skin there that ripped open. It doesn’t hurt as much as it did the day of the surgery but it probably hurts as much as it did on day two or three post surgery.

I almost certainly tried to bounce back faster than I should have. I feel so much shame for “being lazy” when I don’t help and do chores around the house. But here I am with more complications post-surgery because I didn’t let my body have the time it needed. It’s like what happened after the septoplasty when I probably had three or four times as long of a recovery because I didn’t take the twice as long I should have taken.

Ugh.

I should probably sit in this chair for ten days or more this time. That’s hard for me. I must work to feel worthy. But if I don’t rest I will be less able to work in the long run. It’s complicated.