Tag Archives: living with disability

Being challenged is good.

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I’m trying to convince myself so please forgive me for protesting a bit too much right now.

I don’t know how people balance all the roles they play in life. I really struggle with the constant triage of priorities. There is no way for me to have a set list of what order I handle tasks in. My life is too complex.

This week became more complicated because we found out that Noah’s surgery wasn’t just to get the weird screw thing out of his arm it turned out that he had almost completely severed his tendon. Whoops. He can’t use his dominant hand at all for weeks. He is also having a gout outbreak in his left foot and he can barely walk and he can’t stand for long at all. So he literally must be in bed for a lot of the day or in a chair with his foot elevated. The last time he didn’t rest enough the attack went on for four months.

I mean, his job is having to just deal with him going on temporary leave but he also does a fuck ton in the house. Most of it he can’t do… indefinitely. Most of the time he does a lot of covering for my disabled ass. He does a solid half of the cooking. He cleans. He helps with kid-things.

Oh, and I had already scheduled going on a trip with one of my kids through some of the biggest art galleries in Western Europe starting nine days from now. We’ll be gone two weeks. At the end of the trip Noah has to bring our 5 year old to London to meet me because we could not get a passport appointment in Edinburgh in the last 5 months of trying. Yeah. That’s gonna be a fun trip.

My sexy life is really not in my top 10 list of priorities right now. I am tracking so many lists in my brain I feel like I am about to go mad.

I’m also trying to help my friend set up a retreat. She’s had a bunch of health complications and other life frustrations so the process is going slowly and I have to keep circling back around. It is taking up a lot of room in my brain.

The garden work I need to do right now is such a long list that my hands couldn’t sustain the typing. IT’S SPRING, DAMNIT. I can fill absolutely as many hours out there as I am willing to spend. (And all of them make me SO HAPPY.) I think about it so many hours of the day that it is definitely more than a 40 hour/week gig. I have learned so much more about soil biology and now I want to spend all my time figuring out companion groupings for plants. Thinking about other things feels like a serious imposition.

I’m just starting to feel enough better after being sick twice in two weeks that I can re-start running. I haven’t done it yet though. Today has really been the first day when it might have been at all reasonable and I’ve been working since my eyes opened.

The more things I have to do the more I want to type at myself to list it all so I can try to figure out what to do first. But not just a to do list. I need to reflect all the way down on why something is more or less important.

I have been maintaining excellent self discipline about continuing to plow through books. I’m really happy about that. I’m managing about two a week and that feels like a good thing right now since I’m mostly reading books about permaculture and I need to finalise my design layout for this year like yesterday. I’m also working on a couple of other non-fiction topics that I’m happy about. And I have a couple of kink books I have never read that I picked up recently cause they sound neat.

Cause I have a lot of time to think about sex. I drift pass this space mostly so I can be happy that at least someone is out there doing the fun stuff.

In the next week I need to do some batch cooking for the time when I am gone since they are going to be on pure survival mode. I need to write down organised lists of all the stuff that needs to happen. Once I write the list I need to put them in the specific order of most important to least important and I need to just hope that the top 3 things happen without being allowed to be cranky about stuff that is missed. I need to leave everyone with a full drawer of clean pants. It’s fine if their other clothes get gross but everyone needs clean pants for the whole two weeks. Hell, I bought Noah a whole extra week worth today because he will not be up for dealing with the laundry.

Triage, triage, triage.

As much as I like to do celebration cooking I absolutely loathe day-to-day home cooking. It’s boring as shit. I feel stabby. I have to just STFU and do it. So much of it.

I also need to finish the tax paperwork he was supposed to finish because that’s due when I’m leaving anyway. Fun. Paying taxes in two countries is kinda annoying but I’m happy to be here so I’ll keep it up.

Oh yeah–do I have friends? I think I have friends. I suppose I should see people sometimes? Luckily T talks to me every week by video call so it helps me feel less isolated. Which is mixed–I might have to work a lot harder at cultivating local relationships if I couldn’t still cling like a limpet to my Californians.

New people are scary. I’m a lot. I am definitely not everyone’s cup of tea. I am neurotically particular about a great many things. I get RSD like whoa. I was a professional new kid (was a student in 33 schools preschool-grad school) so I’ve met a lot of new people. Most of them just don’t have enough bandwidth in their brain for new people. Some will throw rocks. A few will like me. And then every very very small percentage of the time… I make a friend. I am a lucky woman because I have more than two close friends. That is not promised to anyone in this life. I should not be greedy. Maybe my luck is running out. Who knows. New people are scary. But you can’t get to yes without risking no.

It is hard absorbing the opportunity cost in terms of time and energy lost through connections that are briefly explored before I move on.

Even though I don’t live out in the countryside I act like I do. I live and work on my property most of the time. We are homebodies in a way I never expected. My life has not worked like this in the past. In California there were always so many strong ties, higher ranked priorities, and the fact that getting places in a car is just less effort than riding around so we didn’t stay home much.

I was really enjoying the constant fucking we were doing a few weeks ago. Now it seems like just a dream. Ah well. I’m old enough to know that whatever is happening now will not always happen.

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.

“Risk Aware” Consensual Kink

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I’m having some feelings about how stupid I was as a young person. I consented to things I shouldn’t have consented to. I was coming from a background of really extreme trauma. My normal meter was so fucked up it politely can be described as not existing.

I made stupid choices like staying in a relationship with someone who broke my arm in the first two months. “It was an accident; he didn’t mean it. I can’t hold him responsible for accidents.”

I made stupid choices. Like choosing to fluid bond with someone who refused to get an STD test for years. When I was diagnosed with HPV I totally felt like it was because I was such a slut and I had slept with so many people. I apologized to him profusely for exposing him. His response? “Oh I knew I had warts.”

He. Knew.

But he didn’t bother to tell me. He didn’t think that was information I needed to know. It was “none of my business to know his private medical information.”

So instead I got to have cancer taken off my cervix with a laser at 21. Cheers.

And now, in the gift that keeps on giving I have a malignant melanoma on my back. In layman’s terms: I have fucking cancer again. Do you know what that partner used to do? Give me sun burns on purpose because it was funny to watch me be in pain that I couldn’t get away from.

Two sunburns in a lifetime greatly increase your risk of skin cancer. I chose to allow him to burn me. I was a stupid motherfucker.

So now I’m 38. I have three kids who are 11, 9, and 1 year old. I get to deal with cancer again. I probably need to change everything about how I live my life. I need to be so absolutely religious about skin exposure it isn’t funny. I will need to go in for full body checks for more cancer for the rest of my life. I will need to change my diet to decrease my risk of cancer.

It isn’t that partner’s “fault” for any of this now is it? I chose to take these risks. I will pay the price.

And he will pay nothing.

M/s, sexual dysfunction, and healing

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When I showed up in the bdsm scene as a fresh shiny 18 year old I was still reeling heavily from my childhood. My primary childhood rapist had been dead for less than two years. He and my brother killed themselves in a 3 month span when I was 16-17. I had been out of my abusive home of origin for less than a year.

I spent a lot of time cutting myself and I liked to burn myself and I hit my head on concrete. I engaged in extremely risky promiscuous sex. I would let almost anyone who asked politely hit me even if I didn’t think they would be safe.

I entered into my first M/s contract when I was 20. My Owner had been my boyfriend/Dominant for a while. My Owner wasn’t what I would call an emotionally supportive guy. He was not up for talking about my trauma or mental illness much. That was supposed to be kept off screen. Mostly he wasn’t even aware of my self harming because he didn’t want to be.

There were a few aspects of our relationship that were really important for my life and development. I think I have most of the executive functioning I have because he trained me. He taught me a lot about following through and executing on plans. He taught me a lot about financial solvency. He taught me about boundaries and agreements and ONLY saying you will do exactly what you will follow up and do.

I believe with all my heart and soul that my relationship with him was my first significant non-abusive relationship. Even though he spent a lot of time hitting me and objectifying me. He did it in ways we talked about very carefully and he absolutely never crossed a stated boundary. He’s a really good guy and I’m going to be grateful for the rest of my life that I got to spend the 4 out of the first 5 years of being an adult with him. I’m in a much better place now than I could have been without him.

What he couldn’t help me with in any way shape or form was my enormous dissociation problem nor my extreme sexual dysfunction. Mostly he didn’t have sex with me much… I think in part because he isn’t all that motivated by sex and in part because he damaged me internally almost every time we had sex (he had an absolutely enormous cock) and I think that was something he felt bad about but we didn’t really talk about it.

Fast forward to now. I’ve been married for 11 years. About a year ago my husband and I decided it was time for us to move forward with the M/s part of our relationship. When my husband asked me to marry him he asked me to be his wife and to be his slave. I told him I could be his wife but neither of us were ready for M/s together and we needed to figure out a bunch of shit together before we did that.

So we waited 10 years. I like to pretend this was us being responsible and trying to get to know one another. In reality it’s more complicated than that.

My husband doesn’t have a lot in common with my former Owner. He’s intensely interested in helping me emotionally process. He has training as a hypnotherapist and I would say that in the past 11 years we have spent hundreds of hours talking about my various psych problems and my history. He’s the only person who has ever been all that interested in me or in why I am so fucked up. He makes me feel seen and valid and important in a way I haven’t ever felt in my whole life. My husband is awesome.

But sex has continued to be complicated. I’m still very damaged internally. My cunt was shredded over and over throughout my life starting when I was a baby. My cunt isn’t in great shape. Two vaginal births have… strangely helped and hurt at the same time. A lot of scar tissue was broken up in the process of delivery. But I almost died because my cunt was not real able to function the way it was supposed to and I hemorrhaged very badly.

For a lot of our marriage we have both tried very hard to make one another happy. We are in what psychologists like to call a “repair marriage” where we both showed up intensely fucked up and we are trying to consciously help one another become healthier, more whole people. Mostly this is going pretty well. Except when it blows up like a fucking wild fire because we are both damaged people and that shit happens.

For many years I have operated under the assumption that my husband married me in large part because I spent my childhood with my parents actively telling me that marriage meant you were a permanent whore and you never got to say no to sex again.

I have a hard time believing anyone would want me for anything else.

But my cunt is uhhhhh damaged. Severely. That damage is a constant problem and it always has been. Sex that is barely too rough can cause significant re-tearing and sometimes bleeding. And I don’t mean rough sex. I mean if I am .00001 ounces too low in moisture for lubrication.

I’ve spent the vast majority of my life with my cunt burning like fire every minute of the day and night. Because I chase sex like my life depends on it. Because what else am I good for?

Last year I hit a wall with my husband where I couldn’t continue to do what I had been doing with him to manage. I don’t do most of the forms of self harm I used to engage in. I don’t cut myself, I don’t burn myself, I stopped beating my head… the only drug I use is pot and that’s with many doctors telling me that I MUST KEEP USING IT. It’s the most effective medication for my complicated array of mental and physical issues. I need medication. It’s not optional.

So I have worked hard on getting rid of most of my dysfunctional coping methods. That’s good! But what do I do now when I feel completely flooded and unable to cope? Well last year I tried to lean more heavily on my excellent dissociation ability and I asked a bunch of my nice friends to hit me and fuck me a bunch. They did. It was fun and I thank y’all for that.

My husband flipped out. That was… not a way he was ok with me coping and we’ve had a rough year since then processing all the damage I did to our relationship. Damage I did in part because I was trying to figure out how to twist myself into pretzels so I could meet needs of his that were hurting me really badly.

Now we’ve had over a year in a row of a lot of screaming matches. It’s been hella festive and hard. Why did we pick this fucking year to be like, “Fine. It’s M/s now or never?”

Because making optimal choices is not my strong suit.

Frankly having the first rule in our M/s contract be that I have to prevent him from damaging me is… quite the head fuck.

It means I am having to talk very explicitly about the extend of the damage I have sustained over 34ish years of harming my cunt. It means that I have to get very loud and aggressive about I CANNOT JUST BE AVAILABLE FOR SEX WHENEVER YOU WANT IT. THAT IS NOT OK.

Because I can’t. I am not physically not emotionally capable of doing that in a way that is even remotely healthy for me.

I have been struggling to carry the amount of pain I feel for my whole life. I have wanted to die for more than 30 years. I try year by year to reduce how much pain I’m in so it is less of a burden, so I can carry it longer. But it’s very hard.

Before some fucking asshole tells me to see a therapist… I’ve been in therapy for 33+ years. I’ve seen more than 35 counselors/psychologists/psychiatrists. I currently have a large and complex medical team who all talk to one another about my shit. My kids are in therapy. We go in and out of marriage counseling. My husband has seen therapists. We see a family therapist. Keep your obvious unhelpful advice to yourself, m’kay?

Suicidality is a coping method. It’s not an ideal one. It sucks. It hurts me and it hurts everyone around me. But I’m coping as absolutely best as I can. My medical team tells me constantly that the amount of progress I have made and continue to make is just about miraculous. People like me usually just die. I’m doing really well for where I started. Even if I do still feel like a festering pile of shit.

My husband wants to keep me for as long as he can. That means helping me figure out how to be ok with being inside this brain and inside this body because that’s the path my life just has to take.

That means we have to figure out how to have sex without hurting me. As a submissive masochist that’s a very hard thing for me to demand. It feels like a very wrong thing to ask for. It feels like I am bad and selfish and cheating him out of what he deserves for putting up with my stupid self.

But I have to change this. No matter how hard it is. Because this right here is a serious problem.

Some day I have to decide that the health of my cunt matters or all the work I’m doing to try and convince my body that I am safe and I should stop the hypervigilance and constant paranoia about who is going to hurt me next is wasted time and energy.

I don’t have so much time and energy that I can afford to waste it at this point. I’m so tired.

Not to mention how fucking expensive this god damn medical care is. I feel like such a waste of resources.

I like to be hit. But there are a lot of limits around what I can bear and still function.

I like sex. But there are a lot of limits around what I can bear and still be functional.

It is very hard to believe I am worth this much consideration and effort.

But he keeps telling me he wants to keep me.

Evolving sexual dysfunction

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I’ve been documenting the intense pain I feel in my cunt for over a decade and a half. It’s not… news. It’s a fact of my life. I’m 36 and I wasn’t aware for the first several decades of my life that it was weird that I thought cunts were supposed to burn and be in terrible pain most of the time. Oh. What do you mean your body doesn’t feel like it hates you all of the time?

I’ve had a lot of sex even though it hurts. Sometimes the fact that it hurts is part of the reason I seek out the sex, it’s a form of self-harm that people don’t question in the same way that they question me when I open myself up with a scalpel. Oh, you’re hypersexual? That’s fun! Sorta.

But I’ve hit this point in the evolution of my mental illness and suicidality where I need to reduce how much ambient pain I feel in my body. I can’t cope the same way I used to. And there are these people who would be devastated for the rest of their lives if I killed myself so I need to find some kind of way to be in less pain.

I see all the doctors and health practitioners to manage my fibromyalgia and other physical problems that can be managed.

How do I get my cunt to stop hurting? That’s… that’s going to be a big deal.

I’m not in the kind of marriage where declaring my cunt off limits semi-permanently would work out. I’m also not allowed to manage the pain in my cunt by doing the hyper-sexual thing so that my cunt becomes numb and it’s easier to dissociate. The more sex I have with lots of people the less I am capable of noticing the pain in my cunt. It’s not that it is gone… it is that my brain puts it in a compartment and I’m not allowed to look at it in the same way. It’s not a great long-term coping strategy because I cause physical damage as I use it.

Most of my life has been me flip flopping back and forth between various forms of self-harm trying to do slightly less damage with each change. I’m still not sure how to fix this problem without switching to something else that will cause a different kind of damage.

The intensity of my current suicidal jag combined with where I otherwise am in life stage events mean I have to make some progress on this issue that has haunted me since I was a toddler.

I have to make progress on this idea of my body being worthless and only existing for other people to hurt for their pleasure. Yeah yeah masochism/submission/whatever. I need some god damn limits. Only it’s hard to defend a self you don’t believe in. It’s hard to act like you have self worth when you are acting on issues where you have not been allowed to have the word no be effective.

It’s not that I can’t defend myself against anything. It’s that I have gaps in my sense of self where I can’t defend those gaps. Mostly I’m a wildly confrontational person. But not when it comes to defending my cunt.

I gave up that battle as hopeless decades ago. My opinion about what happened to my cunt mattered so little for so long.

But that has to change and it has to change inside of me before I can change how I let people treat me. I don’t know how to think of myself as someone worth defending, not like that.

This is really hard.

Touching without asking x-post

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Hey y’all, I want to talk about a subject that is near and dear to my heart. Touching.

I had one of those shitty childhoods. (I even wrote a fucking book about it. Thousands of people have read it and concur: yup a shitty childhood.)

Being touched is complicated for me. I like touch. I need touch a great deal more than average because I was pretty severely neglected as a young child. I was not touched appropriately and it has damaged me. What touch I got was often sexual abuse. Which complicates all kinds of touching in a sexualized setting.

I came into the bdsm community at 18 years old. I found the local munches, local private parties, public scene, and I found myself an experienced top pronto.

When other people talk about their college life experiences I cock my head to one side and listen because I wonder what it would be like to be normal. I do have a college degree, but I lived with my Dominant/Daddy/Owner. For two years of college I was a 24/7 slave.

I just don’t identify with the “college” experience people talk about. When I graduated I knew the names of three of my classmates.

I personally knew the folks who taught bdsm from coast to coast. I’d slept in many of their houses and played with them.

Now that I’m at the ripe old age of 34, almost 35 and I’ve been in the bdsm community for almost 16 of those years…

Touching is weird for me. I have expectations about boundaries. My expectations are different when I’m out in the normal world. Yes, I know that little old ladies in the grocery store touch me without my consent all the fucking time and I can’t explode with anger and tell them it ISN’T FUCKING OK TO TOUCH ME.

I know.

But I found a safe place. I found a place where the rule is don’t touch anyone or anything without explicitly asking for consent. It’s posted all over the damn place. If you didn’t learn that rule in kindergarden (you fucking should have) we will supplement your education until you get it.

Don’t. Touch. People. Without. Asking.

I know you don’t mean anything. I know you think it is no big deal to violate consent this way. But in my PTSD ridden body that went through decades of torture…

Actually it is a big deal. I am only able to relax and enjoy this environment because this rule exists. Because I am allowed to be vulnerable and I will have protection around the soft squishy parts of my heart.

I don’t mean that nothing bad will ever happen. I don’t mean that I really think I’ll never get touched without consent. It means that it is safe me to turn around and snarl IT ISN’T FUCKING OK TO TOUCH ME and I’m not bad. This is the one place in the world where it is safe for me to defend myself like that and not get “What a crazy bitch”.

So if it hurts your feelings that this rule exists in the bdsm community, yeah. Maybe it isn’t for you. Because this rule exists for the safety of a lot of people. The right to touch without asking is not something that makes anyone safer. It makes you happier. I don’t care so much about that.

Despite the harshness of this I love you. Even if I don’t know you very well. I think you have a lot to offer.

But don’t. Fucking. Touch. Me.

Boundaries are important for relationships. Because only in the conversation about where those boundaries exist do you get to define the me and the you in the relationship so that you can have real substantial interactions instead of just projections.

I want to know you and I want you to know me. Part of knowing me is knowing that touch is a complicated beast and there are days I’m in agonizing pain and I don’t want a hug. It’s not personal. It’s fibromyalgia.

But you don’t know unless you ask, do you?