Tag Archives: adventures in the NHS

Too many feelings.

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I am feeling a lot of pain and isolation. I am struggling with how paranoid I feel. I make the assumption every time I leave my house that someone is going to be hostile or nasty. I get a surprising amount of random verbal abuse. Other people hear it–I am not delusional or paranoid.

I started 2024 with so much hope. I had big plans for working hard and contributing to communities. In the end I am isolated, lonely, and I feel deeply excluded. I feel wounded to my core by being asked to stop coming to cycling events. That was the vanilla community I invested in the most since moving. Now I feel like I am dirty and bad and I hurt people by existing near them.

I’m sorry I made you feel like a bad mother because I was willing to defend your gay kid and you weren’t. That wasn’t my intent. You weren’t in my thoughts at all. Your kid was. And that means I’m not welcome anymore.

I’m scared of the queer community now. The fact that basically no one from the organisation committee is checking on me feels fucking vile. I was raped on the final night of a month long spree of events where I personally produced 28 events. (Some cancelled due to illness so I didn’t hit 30.) That feels like evidence that I did not make any friends this Pride.

The NHS told me that I’ve already gotten so much therapy that I shouldn’t need anymore and if I do I can’t apply until I still have symptoms months after the trial. Fuck if it doesn’t seem like the *plan* is to avoid prosecuting rape/sexual assault cases by being so unsupportive the victims commit suicide. From where I’m sitting that looks like THE PLAN. It’s a lot cheaper that way

Noah fell and broke his ankle. He needed surgery. It was a little bit stressful figuring out when the surgery would happen. The NHS really does act like people are just waiting around at liberty to jump whenever they are called. It’s quite different to interact with.

I feel increasingly certain that I made the right decision in cutting things off with Travel Boyfriend. He was not acting like my friend. I feel less anxious. I feel less like I am supposed to be trying harder to win approval. Instead I am back to exhausted lethargy. Anxiety is a motivating emotion. I don’t want to be running on anxiety all the time though. I’d like to actually feel ok.

I know that EMDR would help a lot. I feel deeply upset that I was told no and that I can wait for years. It makes me feel substantially more out of control, helpless, and like I don’t get to be in control of my body.

I wish I felt like I had energy. I have a lot of things I want to do but no ability to focus my body or my brain. I’m in a lot of pain. I feel overwhelmed waiting for things to land on my head. I feel sad and scared and vulnerable and angry. I hate that I can’t be around people without crying.

I hate being me. I don’t want to walk this road. I don’t want to have to manage these trials and tribulations even though I do have so many wonderful aspects to my life.

I know I am lucky. I know I have a good life. It is hard to feel like I should be in it. I feel wrong from the core of me. I work hard on hiding it but it’s a mixed bag. I wish I could like me the way I like other people.

Noah is at the hospital and I miss him. As much as I think I will be stupid enough to want to sleep with someone else one day I think it is insane that I want to be away from Noah at all. He is the sun I orbit around. When he isn’t here I don’t know what to do. If I don’t have Noah to take care of–what am I even good for? Hell, the kids don’t even need me for cooking anymore. They are all shockingly competent.

I am so glad for Noah. I should go to bed. I’m going to the walk to the hospital in the morning and fetch him home in a taxi. Then I’ll get to baby him for a few weeks. I’m looking forward to having a holiday with him alone. It will be our first time having more than 48 hours alone since before Eldest Child was born. Little twerp is closing in on 17. That’s a lot of years of not having time alone.

I think we’ll manage to have fun even with limitations. Noah is fantastic to be with. I’m glad we get to do this. It is a silver lining on a whole bunch of negotiation that lead to nothing.

Letter from the NHS

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I’m copying this shit because it’s so fucking epic.

I’m writing to you as (deleted), Consultant Psychiatrist, referred you to Psychological Services. As you are currently engaged in counseling with Connecting Carers and are due to continue this through RASASH, we are not able to offer you assessment or therapy within our service. I would agree that RASASH would be the most appropriate form of intervention at this time to address your current difficulties and circumstances. As you have previously engaged in extensive psychological therapy I would hope that once this acute period of distress has settled, and with input from RASASH, that you feel more able to implement the learning and coping skills from previous therapies.

Connecting Carers and RASASH offered me someone to sit in the room with me while I cry. They said they would give me tea and cake. They are community support workers, not therapists.

Well. I don’t think I will bother asking for mental health support in this country again. I am saving this letter. If I ever commit suicide I am using the back of this letter for my note.

Having a hard time

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I’m upset about the lack of support from the NHS. I talked to someone high up at New Craigs (the psych hospital) and she told me I can’t have therapy until after the trial. I feel like if they won’t support me through the more traumatic period I’d rather set the building on fire than go there for help afterwards. (No I am not going to set anything on fire. I am not a violent person. I will, however, opt out of appointments and treat it like a source of hostility and pain instead of help and healing.)

The GPs won’t diagnose me with EDS or fibromyalgia so I’m unable to qualify for medical cannabis. That leaves me with the black market and a lot of lung damage. I feel humiliated and debased.

I feel like the NHS Scotland wishes I would just die and stop being a problem. Or at least leave the country. They would be happy with either.

My house is down with Norovirus. All three kids have fallen like dominoes day by day and I expect to go any minute.

I’m on a medication break because my usage level has increased times 5 and that’s really bad for my body. I’m not coping well. I’m in a lot of both physical and psychological distress. I believe with my entire soul that the NHS does not give a shit. I’m pretty sure I’m going to develop serious health issues here and I won’t seek care.

Hell, I tried to make an appointment with a for-pay clinic in town. They told me it is obvious I am in significant distress and they will see if they can do anything for me then they didn’t respond again.

This is fucking hilarious because I’m not even asking them to do much. I want them to evaluate me and confirm my original diagnosis information so I can go to a different private clinic with UK records and get cannabis. They won’t do it though.

I feel completely dehumanised and devalued and debased. I feel like dirt.

The more I learn about mental health care in the UK

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The more I believe I will probably be on my own for figuring out my shit going forward. I am eligible for supportive counseling, which is not therapy. Before the trial it is unclear as to whether or not I can or should have any kind of therapy and in any case my notes have to be shared with the defense team. So uhhh, no I guess I don’t need therapy.

I’m in that rough spot where I would benefit from being able to talk about the ways my mental health is not going well. I can’t say more to Noah though because too much of it feels like I am threatening him. I need to just not talk about it at all. I’m feeling a lot of feelings about this. I don’t want to dump on my friends so most of what I am saying about my mental health is that it is not great. I don’t have anyone I feel comfortable talking to.

I don’t have a single person I’m willing to freely talk with about what I am thinking. I feel like every thought in my head is proof of why I deserve more punishment. Why I should allow my life to be smaller and smaller. Why I should shut up forever.

Between the fact that everything I say can be used against me in court and the fact that everything I say upsets the people I live with it feels like I should stop speaking entirely. I will be punished if I don’t.

It’s not that I dislike him

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I like Noah very much. What I don’t like is how I feel. What I don’t like is feeling like I need to spend the rest of my life hiding from people due to his overwhelming insecurity.

I don’t hate the life I have created. I don’t want to be out of it. It’s just small and getting smaller and I don’t have any sign of permission for growth any year soon here. I don’t know that I will be allowed to do much of anything involving other people after the indenture. I mean, I can do research and I can write books. It’s not that I can’t have interactions with people at all. I could support Noah in socialising with his people, as long as I bounced my eyes carefully and was careful not to become too friendly with anyone.

I need to stop looking for support. I need to stop looking for people who will invest in me. I get what I get from Noah and the rest I need to just come up with on my own.

I’m really scared that I’m not enough.

I no longer believe that I get to throw myself back on the net that I have created. It’s not ok.

When I think about where else to sleep, one of the obvious options is the pull out couch in the studio. Only that’s where it happened.

I feel very sad and very scared and very alone. I feel like my childhood never ended. I feel like I am waiting to be made to leave. I know I won’t be, but that’s what this feels like. It’s why I isolate as much as I do. My brain expects and needs that as the result of how I am feeling right now. When this happens I have to go away. Because I am so bad that no one can endure me.

I am going to need to request more sleep medication soon. I’m going through it much faster than usual and I am scared they are going to tell me no. I am afraid they are going to tell me that unless I can be compliant with how they want me to be fixed I deserve nothing at all–not the medication I got to after years of experimenting and sleep tests and evaluations of other ways of managing my extreme PTSD symptoms.

For the love of Cheese, please let me sleep. Mostly I don’t need help very often; it’s not bad most of the time. I’m not ok right now and I need this help and it’s the only thing I’m still getting that they might question. I even fired the counselor I liked so they can’t say I’m getting help already outside the system.

I bet I am going to get in trouble for that. I’ll be told that I don’t care about getting well so I don’t deserve the medication that has been a steady source of appropriate and non-escalating usage for over 10 years.

I really don’t like being me.

I hate being depressed

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I am angry. I am irritable. I don’t want to move. I feel only anger and fury and dislike for my children. I’m not feeling motivated to eat. I’m sleeping absurd amounts but not feeling even vaguely rested. The NHS page on depression is so belittling that I’d like to learn how to launch a DDOS attack and bring down the NHS website because I’m so fucking angry that I’m being told I should maybe talk to someone, eat healthy food, and exercise.

Here the treatment for depression is: nothing! Surely it will go away. Wait, it didn’t go away? Fine, then let’s give you a fucking self help book and you can go home and fix it without bothering us. You do a workbook on your own and a therapist checks up to make sure you did your homework. They might send me to a group exercise class since I can’t figure out how to exercise on my own. Bonus points for it being a kind of exercise that will cause me injury and then they can tell me that I don’t care about my mental health again. Then eventually if all that fails (which it will in 99% of fucking cases, but let’s abusively shove everyone through the process because EVIDENCE BASED MEDICINE) we will let you talk to a therapist many months of suffering later. When you talk to that therapist you will be told to go on an SSRI. You will get some cognitive behaviour therapy bullshit. CBT is widely considered to be gaslighting and wildly abusive. It is *the* form of therapy offered on the NHS. If I’m severe enough they might consider letting me have abusive CBT *while* I’m being forced on a drug that is going to make my life a living hell.

I want fucking EMDR.

Here they max out at 16 sessions for any kind of treatment. This is why I am considered treatment resistant because in 16 weeks a therapist has barely learned the shape of my problems.

Amusingly, the nerve pain medication I’m on–Amitriptyline–is their second line “I can’t take SSRIs” option. So I’m already on that antidepressant and I have been for years.

EMDR is not even on their list of possible treatments for depression. They won’t let me have it at all. I feel so angry that I am going to have to fight this hard for a non-invasive, non-drug form of help. That seems really broken to me. I want the least expensive option. I don’t want talk therapy for the rest of my life and 16 sessions is fucking stupidly a waste of time and resources. I am not a 16 session patient.

I feel sick and bad and useless and stupid and like I should die. I don’t want to snuggle and I feel like I am going to throw this fucking cat across the house if she doesn’t stop scratching me to ask me to pet her. (I haven’t thrown her.)

I feel like I don’t know how to stop roiling in rage and pain. Everything in my brain is saying that I am a piece of shit who should die. I don’t do anything that is good in the world. I am only bad. I feel guilty for backing out of the date with TB and also like I might cause serious damage to a long term friendship if I go and I flip out at him because I’m completely dysregulated. That’s not fair.

He dodged a bullet. Lucky him. He was smart to opt out of being a bigger part of my life. I’m really not worth it. And I think he was the one shot I’m going to take. He was barely passive and accepting and supportive enough of my marriage for Noah and no one else is ever going to care even 10% as much as he does about preserving my marriage. He’s a really good friend and I am lucky to know him. I wish I felt like there was any good luck for him in knowing me. I feel like a punishment and a curse.

I should be getting ready to bike over to go rock climbing. It’s hard to move at all. I want to lie on the floor in the fetal position for the whole day.

I want to fade away entirely.

It’s weird

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I like dropping bits from my brain like leaves on the stream of data that is the internet. It feels very alienating when I stop myself. I feel my personality, my sense of self constrict. If I am not sharing thoughts, did I have them? I need to be witnessed in a way that is awful and overwhelming and makes me feel empty. In it I see the way my children yell, “Look at me!”

Do we all want that so much it feels like a burning knife in our bellies?

I finally did something today. I cleaned the kitchen. It was pretty gross. Well, I cleaned most of the kitchen. As much as I could make myself do. I feel in myself this urge to go through and whip the house and garden into shape for the winter–it would take me 3-4 days of solid work if I felt whole enough to do it. Instead I think most of it won’t happen at all and I will stare at walls and wait to die instead.

Nothing expeditious will happen. I’ll just wait. Death is coming for us all. Every day we are always waiting for death. This is a morbid thing more than a suicidal thing. I am feeling morbidly obsessed with death. I feel like I can think about very little else and that’s really annoying.

I was listening to my “hope” playlist earlier trying to have some feeling in my body that isn’t negative and pessimistic and despairing. Fat fucking fail. I can’t.

I cuddled my baby and talked about how she is doing the best she can and no her mistakes do not mean that she is naughty. Sometimes she does do stuff that we aren’t very happy about. She isn’t trying to be mean. She isn’t trying to hurt anyone. She isn’t trying to destroy anything so no, she is not bad.

Why can’t I feel like that applies to me at all?

I’m freaking out about how much I want to see my mom and Auntie. I think I actually want to stop going back to California because I don’t want to feel like I could see them. I can’t. I have no idea how they would feel about seeing me. It’s been almost 14 years. It still hurts like a stab to the heart every single time.

Mama says I could leave Noah and move in with her if he is hurting me beyond what I can bear. I don’t think he is. Also: how in the fuck could I handle moving back to Santa Cruz? Drive past Auntie’s house every time I go to the Valley? Nah. Nah I can’t do that. I can’t. That’s a bridge too far. I really can’t.

Hell, I can’t go back to driving. Moving back to California is a non-starter.

Besides the fact that I don’t want away from Noah. That is the scariest thought. I am so much more afraid of losing Noah than I am of dying. I need Noah for what he gives me spiritually. Noah is the rock around which my life is built. I do not know what I would do without Noah. My life is built around serving Noah and that’s not something I feel motivated to change.

I would not be happier as a slutty single mom. I would probably turn into my mother and never have sex again because I don’t trust anyone. I would be terrified that I would expose my kids to a predator because I have famously shitty taste in people to trust. I like monstrous predators. Apparently. Or they like me. Or something.

I would not leave Noah. This is a hard phase. I’m not going to leave because he delivered on the “worse” he said he would give me during the vows. I knew it was coming. It was foretold and promised and everything. He’s hurting and not being gentle with it.

Noah tells a sad, pretty story about an orphan boy and his escaped, wounded rhinoceros. We trade back and forth who is the boy and who is the rhinoceros. I don’t expect him to always be gentle. I don’t know what I do expect. I don’t know what would be better. I have no idea what I would ask for. Right this exact minute I can’t imagine ever feeling happiness or joy again.

Right this minute I feel like I should cancel with Travel Boyfriend. There’s no way that I could deliver on the good time some other self who used to live inside me offered. That self is gone. She feels dead. She thought maybe it might be ok to really grow and change but no. I need to calcify and chip off edges. Right now it feels like she was the part of me who wanted to recover from being raped. You know what? Fuck the NHS. Medical malpractice my big toe. You are lazy and ineffective motherfuckers. I know it saves you fucking money. And it HELPS YOU CUT OFF THE EDGE OF THE BELL CURVE YOU MOTHERFUCKERS.

I feel sick and depleted and destroyed. My head hurts. My soul hurts. I hate doctors so much. This entire experience is so degrading.

How would I even be able to tell if I was so upset about Noah? How could I narrow down the sources of stress and distress? Do you know who supplies all of my support? Noah. Leaving Noah would be a form of self harm for me. Noah takes care of me through a great many times and types of incapacity. It’s not even just that he physically cares for me when I’m ill–he cares about my soul. He puts a lot of time and effort into trying to help me be ok. That’s one of the many things I’m really sad about.

Right now I’m not feeling better even though Noah is putting a lot of effort in. That feels like yet another betrayal. It feels like improperly displaying gratitude. That old chestnut.

I need to go to sleep.

I keep coming back to this deep unhappiness. I can’t perform good right.

Do I really deserve to be alive? Or am I far enough out on the bell curve that I really should have died already.

Harsh

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I’m not screaming and frantically wanting to hurt myself. I do feel harsh and angry and sick of being flexible. I feel like I cannot keep jumping through hoops to try and be good when there is no good that is good enough to not keep getting yelled at.

Parenting is a shitty gig in a lot of ways. Kids are feral creatures doing their best and you can’t regulate off of them. It’s not ok. There are predictable stages that are frustrating in their own special ways. It’s not that the kids are being extra hard. I just have so much less to give than usual. I feel depleted and diminished.

I’m really struggling with what it means to get help in this country. I am told I can’t get support from more than one person at a time… until suddenly I am told that if I wait to get help from different services one at a time I am told that I am declining help from one of the services and they won’t help me later if I turn down this offer. I’m deeply confused and overwhelmed. I feel like I’ve been threatened repeatedly by NHS doctors that if I am not properly compliant I will be barred from basic medical care from the NHS. I feel scared. I feel fucked over and abused.

Seeing more than one therapist is medical malpractice… until it isn’t and refusing the second person who is offering assistance means I am not compliant and I don’t deserve future help. I felt like I was going to get help from the ADHD prescribing lady until I talked to her boss and now I feel more hopeless, helpless, scared, and vulnerable than I did before.

I feel like I’m about to be barred from medical care because I can’t perform patient properly.

As we have just hemorrhaged money to be able to live in this country permanently, I’m feeling very scared that I will be unable to access the normal medical treatment that citizens get here because I don’t know how to be good enough. I feel deeply abused that this is getting so much worse because I was foolish enough to report a crime. I feel punished. I feel sick to my stomach every time I think about having to deal with the doctors here.

When I think of that insulting lecture about how people don’t get better because the glacial pace of the NHS is deeply painful and they don’t continue to come back for inadequate, inappropriate care. I can literally tell these people that I have paid for tests that reveal that genetically a drug won’t work for me and they tell me I have to take it anyway or I am being uncooperative and I am not interested in my own mental health.

I am fucking livid.

Mama was asking me if most of my feeling bad-ness is coming from Noah and the way he is melting down. No, he’s not helping overall at the moment but he’s not the reason I feel as bad as I do–certainly not on his own. I do feel really bad that he thinks I betrayed him but he’s entitled to evaluate my behaviour in any way he sees fit.

I mean, 2016. I will never be done being yelled at for my craven and disgusting behaviour. I can’t describe myself in mean enough words to convince Noah that I am sorry. I can’t debase myself enough to satisfy his feeling of being wounded. I don’t think he will ever forgive me.

I feel absolutely overwhelming like the next time I am raped I need to die. I cannot survive any more of this. I can’t. People are so fucking mean about me surviving. I can’t keep doing it. If I were a good person I wouldn’t be able to keep going through so much evil. The fact that I keep walking is part of why I deserve every punishment and insult. If I were a good person I would have been destroyed. I am a monster and I deserve every scrap of bad I receive in this life. The only thing I could do for the smallest ounce of redemption is to just fucking die already.

It doesn’t matter though. I have 11 years, 3 months and 19 days on my indenture. I am not allowed to die. I have to, in fact, work really really hard night and day to stay alive. I have to be careful about every fucking aspect of my life if I am not going to die in my 50’s. Between my 4 grandparents and 2 parents there were 2 suicides preventing folks from hitting their 50’s, and 2 folks who died because they wouldn’t take care of their bodies, and 2 motherfuckers who are too god damn mean to die–my grandfather made it to 86 and my mother is still alive.

My indenture runs out when I’m 54. I am going to have to work at making it that long. This is why I couldn’t have another child. Here is a fucking horrible thing: if I fell pregnant this week I would abort. That’s how not fucking ok I am. The idea of extending the indenture by an additional almost 8 years? Now. Not fucking ok. I am not working for that. FUCK NO.

Every time I do that silly thing where I bring up the 60th birthday party I want to have it is me trying hard to believe that I have that much of a future. That’s a sand castle I am not sure that I believe I will ever live in.

I don’t know how to get my head to be ok with the idea that I can’t survive the next rape. How do I endure the days of fear between now and then? I feel like I can’t get yelled at ever again for surviving. I can’t. If I am bad for keeping this shitty meat sack moving then I need to stop. I don’t want to be bad.

I am unable to perform the behaviour as a mother that lets me feel good in that role. I am not being a shitty abusive mother, but I’m not hitting the metrics I self assign.

I am definitely feeling like a shitty wife. My lack of instinctive monogamy is hurting my husband deeply.

Maybe it won’t matter. Knowing that I really should not survive another rape is going to be a good reason to never be alone in a room with people. Maybe I can cut off enough of myself that I will never be put in that position. I don’t think I would be forgiven for whatever I do so I need to ensure it doesn’t come up again.

The only sure fire way to make it not happen again is to die. The second most effective way is to be alone in a room as much as possible until I die. I feel really scared. I feel really helpless. I do not foresee a path forward where I can be alive and good and that hurts very badly.

The NHS is going to be a mixed bag for me

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I am experiencing some frustration. This week I learned that the NHS would have denied me the vast majority of the care I received in California because a lot of it ran concurrently. In Scotland one is not allowed to work with multiple therapists and on varying parts of mental and physical health at the same time. It is medical malpractice in this country.

Well, shit.

It was kind of fun recognising that I will have to route around the NHS while in an appointment with a psychiatrist. She got to try and talk me into not giving up on myself. If I come back and beg enough times maybe the NHS will agree to me having more than one form of care over a long period of time where they control all the aspects of deciding what and when.

Oh. It’s like that, is it?

I am going to learn a lot more about private health care in this country and I’m going to get better about lying and denying the care I am receiving. That sucks. I’m not really into lying as a lifestyle.

The NHS will not allow me to have EMDR before the trial. Thing is, I’m not sleeping so good. Flashbacks/abreactions are really bringing me down. My PTSD responses are really dramatic compared to where they have been for years.

The NHS won’t allow me to talk to anyone else while I’m talking to the nice counsellour lady in town. The nice lady who is a student. The nice lady who works for an agency that is supposed to get me help as an overwhelmed mom supporting disabled kids.

That’s what I get.

She’s a nice gal and maybe I am underestimating where I am going to get in the 6 sessions I have with her before I maybe get another 6 sessions through a different charity agency.

Yeah. That’s going to dramatically alter my life trajectory. I’ve been through 34 years of trauma therapy. I’m sure this student will dramatically make progress with my usually “treatment resistant” PTSD in 6 hours. It’s going to miraculous.

I feel very much like I need to settle down and become a wraith. This country favours passivity and non-action in a way that is going to be a problem for me. I am not a person who sits and waits doing nothing. That leads to deep depression and self harming behaviour that I can no longer sustain physically. I can’t. I can’t go back to hurting myself to cope. Too many pieces of me are broken in ways that could be life ending if I keep it up. Too many head injuries.

Is it weird that I am not fucking ok with the idea of accidentally killing myself in a panic attack in a form of self harm that I intend to be a momentary relief of pain going too far?

If I am going to kill myself it is going to be in some way that is absolutely unmistakable. I don’t want to accidentally cause a stroke. Fuck that shit. If I swim out into the North Sea or go to a supervised euthanasia clinic so you fucking know I picked that. I desperately hope that the people who love me will find a piece of comfort in knowing that I waited as long as I possibly could. I know that probably something is just to break on its own and it won’t be my choice and that’s ok too. Then it really isn’t my fault in the same way and it won’t hurt the people who love me in the same way.

I can’t accidentally kill myself by going too far with cutting. That’s not ok. That kind of thing is messy and dramatic and traumatic in a way I don’t want.

Today is not as bad as a lot of days have been this week but I’m still not feeling strongly attached to the idea of being alive. I can’t hasten my death, and in fact I am required to act in ways that will push it away to further in the distance. It’s feeling really hard.

Like most people I don’t love being in pain. It is hard knowing there isn’t a way out. I sure as shit am not going to be asking for much of the NHS. As much as I don’t love being in pain I’d rather just go through my life in pain instead of hearing over and over that I am not good enough for the thing I know will help me. I don’t qualify. I haven’t jumped enough hoops. Why don’t I jump a little higher and wait a little longer?

These are the people who think I shouldn’t be allowed to have the sex life I want or the marriage I want and they probably think I shouldn’t have been allowed to have children. I should have waited until I was all better to go have these normal things. I haven’t done enough time waiting to deserve the things that other people get as table stakes. I’ve heard this story my whole life.

I am allowed to have what those people need. Fuck my needs.

This is where I am an absolute rubbish example of living consent culture. I was told no, I couldn’t have what I asked for. So I went out and found a way to fucking steal it anyway.

Not exactly but it sure feels like it standing where I am in this moment. Really I just found a way to pay for it and I hunted high and low before I found people who would help me on my journey. I’ve done a lot of things to try and be more ok. I’ve been doing really well for a lot of years now with only a fairly normal person amount of range of volatility.

But hey, it doesn’t even count as rape in this country. It shouldn’t bother me so much.

In a major way I feel like I am far more wounded by how this affecting Noah than I am by the assault. My life is different than it was 4 months ago in ways that feel savagely unfair and painful.

I’m not working hard at chasing down Vicki interviews. I can’t focus. I can barely think. My productivity is somewhere between 25% and 50% of my normal and it feels like an enormous stretch goal.

I feel like a wraith who should fade away to mist. The fire and energy that usually propel my survival have abandoned me. I don’t feel like I have enough faith in what I am going to do moving forward to just charge forward blindly with great force. I don’t have the energy for a bunch of false starts. I don’t. I want to curl up under a bush and never come out and let my body go back into the earth.

I feel ineffective. I feel useless. I feel like there is no point to how hard I work because it will always come back to how fucking worthless I am.

It’s hard home educating three autistic kids. They need a lot from me. Most of it I have to repeat many times. It’s exhausting. I feel like depression is covering me like a weighted blanket on top of the burn out I’ve been feeling for a long time.

One of the hardest things about the way we home educate is we don’t have the neat and tidy ways to check and see if you are doing it right. We don’t have marking periods and standardised tests. We are just living and no matter how much I do for them I never feel like I have done enough. I always feel like I am failing to teach them a lot of the things they are going to need to know. I felt like that as a classroom teacher too, even though my students went up by more than one grade level on average after a year with me. Many of my students caught up on four or six years of learning with me because I could tune in to where they needed to be reached. I worked with kids who had a lot of emotional struggles.

My adult life has been spent trying to give children the things I never got and I am feeling like a very empty bucket. I have been doing this work for 24 years now. Hell, I was a nanny and a babysitter before then. Normally I’m pretty ok with taking it in stride that young people need a lot of reminders. Right now it is hurting me desperately.

I don’t think anyone is doing anything wrong in my house. It’s hard when I’m off my game. Noah does a lot of consistency management for our family but I’m usually the motor. I feel like I lost some integral part of my mechanism and the gears are just not going and I don’t know what to do.

No, I don’t want psych meds. They are not going to clear the cobwebs they are going to make my body start feeling like I am trying to kill it. No. I have walked that road. I’ve tried so many drugs that doctors pushed on me.

EMDR would be very helpful. I’m going to look for private. I think that’s a thing I can make happen. Holy shit. Maybe I really fucking should not. I am not a good liar. I’d really like to sleep better.

It’s been hurting so much that this overlapped with getting kicked out of bike stuff. The woman who had invited me into things in the first place no longer wants me there. She asked me to stop coming because I make her uncomfortable. It’s not that “everyone” there dislikes me–she was the person I was there to get to know because I liked her. I never tried hard to get to know anyone else because my assumption was that I would be too weird. I hope they do well in the future. I think it is important work.

It is not the fault of Highland Pride that I was sexually assaulted in any way shape or form. I am going to be scared to step forward with that community in the future anyway. I feel like I am trying to back out of a lot of kink stuff locally because I am obviously making so many people feel uncomfortable.

Hey look, the bitch who was “too much” in California is also too much in small town Scotland. Duh.

Maybe if I hide for a while before coming back some of my spiky edges will be forgotten. Maybe I will figure out some piece of work to do that will buy me a place even though I am so awful.

I don’t really have hope for things feeling better right now. I know they will at some point but in this moment that seems ridiculously impossible. This always/never place is really dark. I feel scared and empty. I don’t know how to keep giving right now without a lot of very bitter and sharp detritus coming out instead of water.

I’m in a bad place. It is what it is. There is no way out other than going through it.

I know Noah is trying to walk it back because this is hurting me, but I am deeply wounded by him saying that I betrayed him in this situation. I feel wrecked by this. I wasn’t a little bit bad I was so bad.

Right now I feel like I don’t know how to be good enough to deserve anything good. All I deserve is pain until I die. I’m not working enough to be a good tool. I do bad things that hurt people. I speak too sharply because my entire consciousness is permeated with pain and it leaks out and then I am even more bad.

I feel like no one should have to deal with someone as awful as me. I feel empty of goodness. If I ever had any it is gone.

All that is left is a haze of inefficient malice.

See, I’m being good. This is not social media where I will have lots of people yell at me that I am bad for saying any of this because it is not fair that I am “triggering them”.

Fuck me. Why don’t I just shut up or die already?

Another Day In I Am Too Tired For This Shit

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My bed is 7’x7′. How in the hell does a child turn sideways then fall off the bottom?

Yesterday MC had their first visit for assessment to see what sort of neurological testing will help find the correct diagnostic labels so that I can narrow down my research on how to support them better.

It was a good visit but, I think, not what the lady had planned. She had a sheet of questions to ask. Instead of going through those questions MC went through a prepared list of the things they have a hard time with. She flipped her paper over and scribbled like her life depended on it. She scheduled an appointment for me to come back alone and fill out those questions about developmental history. 😂

I had talked MC through how I handle appointments as an adult who does not have anyone to report on childhood milestones/attainment. I forgot that MC is not having my life. Whoops. It’ll be fine.

MC is automatically getting 3 separate assessments based on clinical presentation in this appointment and the intake lady hinted about others that might be relevant after we can actually go through developmental history with a fine toothed comb.

This is how seriously Stanford took EC. I was deeply worried I would not find a way to access similar granularity of help for MC/YC. Stanford did *not* take MC seriously. Stanford asked MC 20 yes/no questions and told me I had a perfect little boy I didn’t need to fix. That was really frustrating. This time the lady watched MC almost vibrate off the chair and noticed “Do you find that you are ever able to sit still?” Only if the kid is in a severe dissociated state because they are imploding under the weight of their own anxiety and it is combined with mutism. No. They can’t just hold their body still like a “normal person”. It is not possible for them.

I am feeling a lot less nervous about this process now. The lady also took it very seriously when I said I have two other children who are also clearly neurodivergent. I don’t know what will come of her making notes about my other kids as well. YC isn’t even on a waiting list at this point.

YC’s flavour of neurodiversity is pretty easy to accommodate within our already heavily modified for neurodiversity lifestyle. EC is doing really well with the structure we maintain. MC needs… something I’m not doing and I don’t know what. I am grateful that the NHS is trying so hard to help me figure out what I should do.

The lady looked really pained when I talked about my own history of being beaten up in school after school and how I was not even a tiny bit surprised when people beat up my children in school. Autistic people are magnets for bullying behaviour.

Human beings often want to hurt people who are different. It’s a thing. A really sucky and terrible thing. I was glad that she showed absolutely no sign of believing that it would be best for my children to be in school. *phew*

Stanford Child and Adolescent Development was quite adamant that there is not a better learning environment for EC than what I provide. They had tiny tweaks to suggest, but nothing major. I hope that the NHS can help me find the tweaks that will give MC also the best learning environment for them. Right now there are a couple of areas that concern me and I don’t know how to fix them. I do need outside guidance.

It’s kind of funny that EC doesn’t mostly overlap with my learning difficulties. His troubles are out in front of me and I can study them without feeling emotionally connected. I just need to support. MC and I share some of the same struggles. The ways in which I have never managed to overcome some of my own challenges inhibit my ability to figure out how to help them make progress. I need a more objective view.

But first I need to go run 4 miles. I’d rather eat glue.

I hit the wall this week. I think I was lowkey sick over the weekend when the kids were all very sick. I kept exercising and working the whole time. I don’t feel like I’m still dealing with a fever but my body wants to tell me to go take a long walk off a short pier. I can’t even tell how much this overreach is about physical load and how much is emotional load.

I feel like my soul is hurting. I miss the physicality of all of my California friendships.

It is already getting much colder and I am not feeling great about the change. My body is hurting a lot. I felt like the tiny increase of warmth of spring was a huge massive welcome change and I was going around outside in skimpy clothing because I was overheating. Now the same temperature range is making my bones ache.

I am not sleeping enough. I am rarely laughing and that can’t be good for me. I feel somber and like I have a flat affect. I feel numb. How can you feel numb and pain at the same time?

I really need to go run. I feel like that is an absolutely outrageous ask just now. Oh well. What I want is not important. What matters is what I do.

Emotional hangover

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My whole body aches and feels overwhelmed and dizzy and crappy because I’m having so many emotions. Emotions about lots of people and lots of situations.

The kink community up here is getting big enough/active enough that sometimes there are conflicting opinions and desires. That doesn’t mean anyone is a bad guy or that anyone is doing something that is wrong. I am trying to learn how to effectively communicate and so far I’m not great. I can pinpoint exactly where I was trying to communicate and it sails right past people. That feels bad. That feels like discounting when it isn’t.

It isn’t that someone noticed that I was trying to communicate a thing and said no. The way I was communicating was ineffective and it wasn’t understood that I was trying to say a thing so stuff went in a different direction. That’s reasonable.

But I spent like two weeks trying to figure out how to talk about a thing and I had to spin my wheels very hard and by the time I figured out how to say it the response was, “You should have said this earlier.” I tried. I can point at exactly where I tried and you didn’t hear me. Part of the reason the communication failed is because I was trying to speak as if no one has authority and we are trying to start from scratch and you are used to authority and you just went about your business making decisions without consulting.

It’s an overall apathetic group of people and if you want stuff done you need to make decisions. I get that. That is a really common dynamic. This is such a small group that I was hoping for something more leaderless. I’m not specifically gunning for being the boss. I don’t have that to give.

Our water is off and on because the construction up the hill knocked out a water pipe and it’s not going very well. It has made everything annoying and complicated in our house for two days now.

I had a thing where a friend scheduled a thing then couldn’t make it at the last minute and in this post-Sarah life of mine I am absolutely shit at handling this. T and I had a thing I don’t know how many months ago where for a little while his life got super hectic and he started being flakey about our chats and I shut down and couldn’t speak to him about it for weeks because I didn’t want to explode or completely over react and my feelings about last minute cancellation are fucking huge. I try not to have these feelings. Most of the time I can handle the fact that life has unexpected changes but it’s not easy for me. I set expectations around a thing happening and then when it doesn’t I feel a whole bunch of really overwhelming feelings in a rush and I want to go to my room and climb into bed and not come out for days.

I don’t have space for that in my life. I don’t get to check out mentally for days at a time. I don’t get a lot of undisturbed rest. I get a lot more than I used to, but these things are not easy.

It’s Tommy’s birthday this weekend and that’s bothering me more this year than it does some years. I feel really sad. He would be 47 this year. Only he never got older than 22. He’s been dead a fair bit longer than he was alive. His whole story arc is so sad and tragic and unfair.

My ADHD meds ran out and I apparently don’t get a refill until after some medical tests that aren’t scheduled till next month. So I’m going on and off amfetamines and that’s not exactly ideal for emotional regulation and getting chores done.

We tried to reassign chores. Then a few really expensive wool items of clothing got washed. I’m doing the fucking laundry again and forever after because washing my fucking wool is not ok.

I’m spotting on day 14 of my cycle and that’s not normal. It feels bothersome and emotional in a way I don’t like. I assume it is related to the increase in running lately but it’s always emotionally uncomfortable to me. Day 14 is usually way too early for the PMDD cycle of ugh and crappy to be starting but it sorta feels like I am tanking emotionally and I have no resiliency left.

I feel like shit. I feel sad and lonely and incompetent and stupid and bad at everything. I feel empty and hopeless.

I feel really good when I am out running. I feel fully in my body and alive and strong. Then I come down from the euphoria and I want to crawl under a rock.

Pacing

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I am sure there are many people who would not appreciate me saying this: but I miss lock down. I didn’t have to worry about balancing the various needs of my family members with various outside the home activities and people while also figuring out when to get chores done. I slept more and more consistently. Lately my sleep is shit again.

One of the problems with the age spread of my children is that the shape of providing “structure” for each of them is different. Youngest Child is still small enough that she should mainly be around kids through classes and they all want to start mid-morning and last for around an hour before popping the kids out on the other side expecting snacks and a trip to the park. Most parents of children in similar ages are either nearly in nursery or already in nursery and they are specifically training the kids around having the habit of being out of the house 5 days a week for most of the day so the children manage the transition to primary school.

I get it… but I also find that doing that in the morning mostly shoots my wad and I’m too tired to come home and do a big project of my own unless I do it after dinner and give up sleep. If I am out for the morning the mid-afternoon to dinner chunk is mostly me interacting with the older kids around their school stuff and my brain is just not currently capable of doing something for me while I talk to them. Yay ADHD medication? It feels like too tired because I can’t push my brain into doing many things at once on this medication unless I am super well rested.

If I get a good night of sleep and I start my project early in the day then I can normally handle talking to the older kids about a second thing while I work. (Most projects of this type being garden or cleaning related.) I can talk to them about their literature reading progress first thing in the morning while we continue working on removing nails from the old shed boards because we are going to repurpose the wood. But if I try to do the exact same thing starting at 1 or 2 I get confused and befuddled and irritated and angry. My brain says I can fuck all the way off.

So I’m not making forward progress on a lot of the outside projects I want to do since YC started classes and that’s feeling frustrating. The older kids have enjoyed the descent into too-much screen time that happened during my last painting project and they are absolutely loathe to give it up. They really won’t come out in the mid-afternoon and help me. I can push it in the mornings.

This pacing is not working and I feel exhausted and crappy most of the time. It doesn’t help that Noah’s work schedule is hard to figure out and manage. Working for a company that is 5 hours behind us in time zones gets to be pretty challenging.

I am almost to the end of this session of little kid classes. I am going to try and move the timing. If I can get her into classes that are more like after lunch and less like after breakfast then maybe I can get the big kids through helping me instead of getting on video games first thing then fighting to not have to get off later.

I am getting to the point where I am low key signaling distress in ways I don’t mean to and that’s a problem. Fairly random strangers keep asking me if I have any support because it sounds like I have a lot going on. It depends on what you mean by support but mostly… no. I have been shoving my mental health care needs in a box for a couple of years now. Every so often I open the box long enough to shove something else in then I quickly tape over it again. I’m not ok. I know that lots of people aren’t ok and I don’t have it bad in the scheme of things.

I’m not ok and I don’t have a way to cope with that right now. Therapy isn’t an option–I spoke with my GP recently about head injury stuff. In the course of the conversation she asked me how I was overall coping and I told her not that well. I had previously believed that I would be a lifer in therapy then I moved here and that’s not an option. She told me that she thinks I am being very kind to notice just how limited the access to therapy is here and deliberately not put myself on a waiting list. She told me that she has seen me enough times now to have a sense of me and she thinks that any of the therapists in town could be nothing other than a kind and sympathetic ear because they don’t have more training than I do after how much therapy I’ve had.

This is not the first local expert who has told me that I am the best source of support, tools, and tactics for managing my issues and those of my children in this area. Apparently I put those decades of living in the bay and having access to experts to very good use. Every so often one or the other of the older kids has something challenging happen with regard to mental health because they are people and life is complicated. When that happens I ensure that we have privacy and we get into the heavy stuff. Both kids have said, “I’m sure if I tell you about (_____) you will be upset with me.” I tell them to give me a minute so I can fix my face. Then I put on the “I will not judge you; I will be supportive and unsurprised by anything you say because it’s ok for you to be a person on your journey” face. We talk about their big feelings and the situation and why it is both normal and ok that they are struggling. We talk about the fact that it is hard that we can’t hire therapists to be there through these sorts of things going forward. We talk about what things they can imagine doing to change the situation. I ask if they want to hear about any other options I know about–sometimes they do and sometimes they don’t. Boundaries, yo.

I am not your therapist. I will never be a completely neutral party. I will never be 100% on your side because I am often the person you are in the most conflict with. That is rough. But I am not going to judge all of the things you think I will judge. I am not going to be upset about even half of the things you think I will be upset about. And as you get older I will have to be less and less of who you consider when you decide how you will solve a problem. That is the way forward. I am not and I can never be your therapist but I can help you talk out some of what is bothering you. I definitely don’t have all of your answers but pretty often I do have useful questions. I have been very lucky in my life and the state of California made sure that I had access to lots of people who asked good questions.

I need to start writing even if I am afraid of consequences. I am going to be the closest thing to a therapist I have going forward. That process doesn’t work well without the blog. As my Eldest Child says: “When I write something just for me I delete it or rip it up most of the time because it never seems worth keeping. When I just go ahead and post it right away then even when it isn’t perfect I get feedback and I have to act like it was real and I have to carry on forward as if it has happened and can’t be taken back.”

Of course, she is talking about the status of her fanfic and she’s posting on Wattpad so it’s slightly different. I’ve gotta say that her comments are probably more vicious than mine ever are. I worry about the consequences of my writing because working out my feelings is not a pretty process. Sometimes I hurt people when they know what is going on inside me. If I just shut my stupid mouth and stand near them then they don’t know what an asshole I am and things carry on without too big of a problem.

Being real about all the strife inside my brain is scary. I just about always have as much pull towards people as I have push away from them. My magnetic polarity is really confused.

The thing is: I do shitty things to hurt myself when I don’t work through the stuff in my brain. I am long past the point of the kinds of self-harm that would land me in a psych ward but I am not kind to myself. I do not take good enough care. I do things that will cause long-term damage through neglect or lack of love. It’s little, cumulative things but nothing dramatic that will force other people to intervene. I am smart and I don’t want intervention so let me tell you I will stay below that fucking radar for the rest of my life. There is a lot of room under the radar line to hit a bird and have it destroy an engine.

I am not acting like I am a creature I love who needs to be taken care of. That means I can’t model what that means and that’s a problem. I am very certain that I will never again have a person I talk to all the time to help me sort out my brain. So I have to do it. I need to start doing it a lot again. Which also means I need to stop sitting in this damn chair and use the standing desk. That’s going to have to be step one, Krissy.

Maybe that’s it?

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It’s not a secret that I have long had struggles with my middle child. I adore them and love them and worry a lot about whether or not I am doing the right things for them. I tried to get them evaluated by Stanford before we left California and they got a 15 minute yes/no questionnaire that wasn’t at all useful for data on understanding them. I was frankly pissed off. When they enrolled in school here after a month the school asked for permission to refer them for extensive neurological testing because something is going on. We’ve now been on that waiting list for a bit over two years and every sign points to the likelihood of it being another two years before we get answers. But kiddo is rapidly running into puberty when everything is going to get exponentially harder. My window for effecting major change is closing.

Due to all of that I’ve been doing more research. I am heading in the direction of Pathological Demand Avoidance. (Sometimes referred to as Excessive Demand Avoidance because pathological has a bad reputation. I mean… the definition isn’t awful. The word seems appropriate. I get that colloquial associations can be complicated.) It’s not really diagnosed in the states, this is a UK recognized syndrome. But holy shit when you read up on it: https://www.childrenandfamilyhealthdevon.nhs.uk/wp-content/uploads/2020/05/pathological-demand-avoidance.pdf Oh. That’s my baby. I read it and felt strong recognition. I showed it to Noah and he could illustrate each section with repetitive conversations we’ve had in the past. I read it to kiddo and they said, “Oh wow. That sounds like me.” So whether or not we ever get to an official diagnosis we are treating that like Plan A going forward at this stage.

This has some potentially wide ranging implications for the future. How we home educate needs to change pretty broadly because neither of us can handle more years of crying all the time from frustration that they just won’t fucking do as I tell them to do. We need to find new strategies for figuring out how to get stuff done together and separately. And frankly my plan had been to use our investment money till we die and have the will put everything left towards charities. That may… not really be an option if my kids are not going to be 100% able to support themselves and work. I’m still in the preliminary stage of course but I’m looking into stuff written by adults with PDA and mostly they are not independent and able to work.

(Very briefly if you don’t want to read the whole description on that web page: Pathological Demand Avoidance is very related to autism but there is no certainty whether it does or does not fall under the Autism Spectrum Disorder label. It has enough specific quirks around sociability that it seems to be related but not the same. It is a syndrome where anxiety is the dominant part of the difficulty and the stress of being told what to do is so intense one shuts down. By golly if that doesn’t describe my baby. I’ve been saying for years that when they have a list of things to do the most likely way for them to spend the day is staring at a blank wall, numb. Or huge violent tantrums. It’s a wild card sort of option.

I don’t say any of this to complain, criticize, or put them down. I am looking to understand better so I can figure out how I need to change my parenting so my child can have the maximum level of mental health and support available. If this is what is going on I want to see what needs to happen so they can thrive not so I can figure out which levers to pull to make them change. They are who they are. I accept them and love them. But I have clearly not been handling things in the best way and it’s a problem and it needs to change. We both feel bad a lot of the time and I believe with my whole heart it doesn’t need to be that way.

We are both smart. If we understand what direction we need to head in we will figure it out. One of the ways I am that I believe verifies my own autism diagnosis/autistic personality is that I need to have a set of rules/labels that tells me how to behave or I flail and I experience a fair bit of distress. If I can figure out what label is most accurate then I can do research on what works best then I can act it out. Work with what you’ve got and the whole thing goes better.

On the third day of med trial my body gave to meeeeee

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Very little notice that I am using anything new. I would say that today I felt incredibly close to normal. I feel like I was a little slowed down but in the “I need more sleep and I’m working too hard” sense rather than in the “Holy shit I’m swimming through molasses” sense. I probably feel less of a malaise of depression. Today I was more patient with the kids than I have been on a lot of days lately.

I didn’t do as much exercising as yesterday (only walked 2 miles but I rode my bike almost 5 miles and that didn’t feel hard at all–more than a mile of it was up an extremely steep hill). We went out and picked litter with a group who has been moving around the city trying to help out in different areas every weekend. It was very productive and nice. Gotta meet our local hippie comrades.

I took the pill at 5:30 tonight because 6pm last night didn’t have me feeling sleepy till 9. I also took some pain medication tonight because my back and neck are in full on fuck-you mode and I can’t keep this up.

I don’t know that it is making a big difference in the nerve pain. My hand is still going numb quite easily. My elbow is on fire. My upper arm is numb until you touch it then it tingles and hurts. I can’t reach the wound site to see how tender that is by myself.

Overall I would say that right this minute I think this dosage is not a serious/permanent solution to the problem but the side effect profile is not so bad that I am terrified of upping the dosage to play with it. I am currently taking 10mg and up to 75mg/day is within normal expected range. Apparently it is expected that it might take 6 weeks to be effective as a pain killer. As of this evening I feel very comfortable with being willing to test that long. That’s actually a pretty resounding endorsement from me. Normally 3 days into a drug means I’m already trying to figure out how to get the fuck off it.

So I’d say a C+ or B- right now? I’d like more impact on nerve pain. It could definitely do more for actual depression and anxiety. But it is a start and it’s not a bad start.

And this is all fucking free.

Adventures in the NHS

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On Friday when I noticed that the wound popped open again I left a message on the voicemail of the surgeon who did the procedure. I wasn’t surprised that I didn’t hear back over the weekend. We watched the wound and it improved a lot in appearance over the weekend. Today I got a call to come in and let the surgeon see what is going on.

I went in and sat in the waiting room for well over an hour. Given that I was being slipped in during a fully scheduled day this didn’t bother me a bit. My children are well behaved and polite so it wasn’t a problem for anyone. We sang very quietly to YC and read books and MC wiggled a little in her chair listening to music on headphones. No trouble. When I finally got called in I sent the kids off to the cafeteria with some money for a snack.

The nurse who was examining me was chatty and social and she had a bunch of tangentially related questions to the wound. Generally speaking she just seemed to be trying to develop a bit of a relationship. Given how small this town is, I’m not surprised. She took the dressing off and asked for specifics about the timeline of how healing is going. She asked who has been changing my dressing for me as the one we used seemed small. I told her that we are doing it and we ran out of the bigger ones and haven’t made a trip to the pharmacy yet. She was pretty shocked I am not having a community nurse do all of it–she asked how we were managing. I laughed and said we both have a lot of experience with wound care so it’s not really a hardship for us. She asked what I meant by that and I gave a run down of medical procedures either Noah or I have had to care for and her eyes just about bugged out of her head. She could not believe that people would be sent home with such major injuries to just figure out care on their own. I laughed and said, “It’s really nice to be living in a civilized country now.” She startled. She said that she guesses you don’t really appreciate what you have.

The surgeon came in (I’m having a bit of a hard time with the fact that surgeons are Mr/Ms not Dr) and started off with an abject apology for blowing me off when I brought up the EDS during the surgery. I got the distinct impression he spent part of the morning doing a cram session on what the fork it is and why it matters. He and I were quoting very similar details back and forth to one another about the condition. He is absolutely adamant that I need to get in to see a rheumatologist ASAP because my notes are bare and this condition is a big deal. He apologized again that there isn’t an EDS specialist in all of Scotland. He spent our entire interaction apologizing over and over again. I don’t think I have seen a medical person quite so deeply in “Oh shit I fucked up” mode.

He was clearly very grateful that I wasn’t angry. I told him we are learning together and things will happen along that path. Not everything will go smoothly and as long as I don’t die… we’ll improve in the future. His eyes kind of bugged a bit.

He is now quite concerned about the EDS. He stressed that it cannot be cured it can only be managed. I told him I am fairly chill about it because I’ve had all these problems for my whole life and I’ve been managing and now I have a name for it.

He said that since my wound has popped open twice and the second opening happened several days ago that it can’t be closed again and now I need to just keep it covered and wait for it to heal from the inside out. It does look like it is making progress healing and he does not want to remove the current stitches anytime soon. It doesn’t look like there is any sign of an infection and antibiotics were not mentioned. The occasional twinges of pain I feel are well within the expected level for the depth of cutting he had to do.

In the US the feeling when interacting with a doctor is often “How can I get this person out of my office” because the likelihood that you will really be a specific doctor’s problem in the long run is fairly small. There aren’t many surgeons in this region and I have a complicated medical reality and I’m not that old. The likelihood that I will end up under this surgeon’s knife again are really quite high. When I mentioned the name of the GP I am developing a relationship with he said, “Oh she’s quite nice! Good I’m glad she is getting to know you.”

This is a small town.

The generally expected rate of EDS says that there should be something like 10-12 people in a city this size. That means that information about the disorder is pretty rare and I can understand why people who provide medical care react like they are getting hit with electricity when they realize they really must learn more to care adequately for those specific people. He flinched when I said my daughter has it.

But not in a way that made me feel bad? He seemed like “Ok, I need to step up to this situation” and he was recognizing that the step rise was a few inches higher than he first assumed. That’s not insulting to me at all.

Our breakfast conversation at the house was about how you have to make mistakes in order to learn. I feel like this surgeon wants to get more information so he will never make a mistake like this again. He will handle my post operative care differently next time. That’s nice.