Late night musings

I’m too warm. I’m too cold. The pillows are too soft. The empty duvet cover is too warm. My brain is playing music at me again. I’m thinking about my nephews and my brother and my dad. I’m thinking about my husband, whom I love so very much, I’m thinking about my flat and how I don’t want to leave it, I’m thinking about friends, I’m thinking about my dad’s brother who is dying, and his daughter, I’m thinking “why don’t brains have simple off switches?”, I’m thinking about the meeting with endocrinology tomorrow – no this – afternoon.

Will they want to see? Will they question why? Will they prevaricate? Will they be difficult?

I want testosterone gel and I want to be in control of how much I take.

I’m wondering how my orgasms and sex drive will change.

I’m wondering whether they will come back.

I’m wondering whether kink will come back.

I am afraid.

I am excited.

I’m bloody tired is what I am!

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Autism referral

The doctor sent the referral assessment email today … so that process has begun!

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Waiting

I cycled to the hospital because parking is atrocious and expensive, and I prefer to walk or cycle when I can.

I’m now sat outside the department where the appointment is feeling sick with nerves. I’m waiting for my husband, who said that he would come with me to make sure that I was taken seriously.

He’s just phoned; he’s in the hospital foyer, but he knows where to come.

I can feel an anxiety headache coming on and all my migraine pills are in my other bag. I am as bad as my mother! She had so many bags and always the thing she was after was in another bag!

When he arrived, I signed in and we went into the waiting area.

I felt so nervous that I actually felt nauseous.

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The endocrinologist

She directed me to the chair closest to the desk, sand my husband to a nearby chair. She introduced herself, having just read the referral email from the doctor. She needed a bit of help putting things together, since the referral email was quite old.

She never asked why, although I volunteered that I just couldn’t live with them any more. There was way more that I could have said, but somehow having my husband there I felt a little intimidated.

Interesting. I wasn’t aware of that feeling at the time.

She did ask what I was particularly concerned about. I said bine health and energy – I added sexual function, although that is a lower priority for me, since it still (mostly) works.

She listened really well, but when she spoke it came at a million miles an hour. I had to stop her a couple of times so that I could repeat back what I’d heard.

She explained that in addition to bone health, she had concerns about anemia, watch she would want to test for. And liver function. I didn’t ask for more information; I wish I had: I was surprised because those things has never come up in my research.

She noted that there was only the one blood test taken by the surgery, and I could remember the value! 1.7 nmol/L. I also told her about a blood test that I’d paid for myself before my surgery, which gave me 18.3 nmol/L, which is a healthy normal.

I said that I felt that I needed to be in the low end of the “normal” range; anything too high would be dysphoric.

She said that they usually start people on Testogel.

I felt emotional when she said that I could feel tears coming. I was so afraid that it was going to be “no”, or there’d insist on injections ever three months.

She then talked about the bed for tests. She needs a baseline test before I take the gel, so that she knows if any issues that exist in low testosterone. She has an older blood test taken in October.

After eight weeks of the gel, I need another blood test to see how it’s going.

Ideally the gel should be put on in the morning, and that I must be careful to wash my hands afterwards. I don’t need to be paranoid, just wash my hands. If I want to, I could take it at night. Morning is best because it mimics the body’s natural testosterone cycle.

She suggested that given the amount of time that I’ve been without testosterone and to my fears around dysphoria, that I start on one pump ever other day. Perfect!

I felt heard, not judged, and such relief!

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Coffee in the hospital

After seeing the endocrinologist, the husband and I went for a coffee in the hospital foyer.

We started by me talking about the weather and tides and winds and the best days this week to go kayaking , since he’d suggested it on Saturday.

He wasn’t very excited. Although he doesn’t do excitement.

He then said that he’d only suggested it to please me and he had to stop doing that. He needed to work out what he wanted.

Fair enough. “We don’t have to do kayaking” I said, although I was disappointed.

Wat some point early in the conversation, he lost his place and I was able to recall a few interchanges back to him to get him back where he was.

The conversation got heavier. He is angry and thinks that I cannot be autistic because I used shame to try to control him. This gives me pause. Autistic people aren’t known for using any kind of guile to achieve their ends.

He thinks that I’m using autism to run away from responsibility for this I have behaved in our relationship.

I not “using autism”. I have identified a pattern that fits me in many of my behaviours, my emotional skills, my experience of the world.

I’d normally expect a shutdown to take more time to become a problem. I could feel that familiar treacle brain. I was struggling to remember what he was saying.

He commented on something is said when it’s phoned him yesterday on the way back from Bristol. That, between his episodes, he was the sane one. He felt that minimised how ill he was.

I could feel myself getting more and more upset. “I always get it wrong” I whined. Feeling … unequal to whatever was going on.

Overwhelm was fast approaching.

I know that I tried to explain more of what was happening inside my brain, but the majority of the memories of the conversation are just gone. I feel frustrated and angry that my brain just does not work! I should be able to fucking remember what was said.

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Emotional integrity fields are offline

I went to the toilet. I needed to get somewhere safe. Just for a moment.

I said “half the time I feel worse after seeing you”.

I think he said “you and me both”.

All the cubicles were in use.

As soon as one became free I darted in.

FUUUUUUUCK

I shouted and stamped my feet.

Then I cried.

What the fuck is wrong with me?

I wasn’t long in there, just long enough to regain a little bit of breath.

I could see him outside, having his last cigarette (he’d run out).

He asked whether “it helped” referring to the tantrum in the toilets. Nope.

I don’t recall what he said then, but it made me laugh.

He was worried about me cycling in the emotional state I was in; I said that I was going to have to walk through the hospital to get to the bike. I think he took it to mean that I was going to walk and calm down.

I walked. I quietly made little Star Trek alarm sounds until I was calmer.

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Counselling

I made the appointment for the blood test at the doctor’s before heading home and making tea.

This evening’s counselling started with a recap of the day. He appreciated that it was all pretty huge. He doesn’t understand how my husband struggles to accept the likelihood of an autism diagnosis.

I said that if the ways of coping with it work, then perhaps he doesn’t need to accept it as long as he helps me work around it and sees that it actually can be managed.

I talked a lot about the state of overwhelm that so often catches me when I’m talking to my husband, and the level of frustration that I feel. The treacle brain problem that precedes a shutdown, how I do fight it, but then cannot remember half of what was said.

I wish I could remember what caused him to say that it was like my shields are collapsing, which made us both laugh because I’d already written the title of the section immediately preceding this one. This counsellor gets me like nobody else!

After that, I told him about the Star Trek alarm sounds I made after talking to my husband. I cannot understand why nobody has commented on them, as I often make them when I’m emotionally overwhelmed and have to be in public. It the leg juddering, or rhythms that I beat out when excited.

Wheels of fortune

He then got out two charts on relationship dynamics. The first was titled “Power And Control Wheel” the other was titled “Equality Wheel”.

He asked me to highlight in different colour pens the behaviours that I did and the behaviours that my husband did.

I lay on my front and started highlighting the various things that applied. Mine in pink, husband’s in blue. My counsellor moved from the lotus position that had mirrored mine, to lying in his front also.

It was an interesting and occasionally emotional exercise. The smatterings of colour were fairly even in both wheels.

I noticed that most of my husband’s highlights in the Power wheel were as a direct result of his illnesses, which in my mind made him unaccountable for them. I wasn’t in any psychotic episode, so I’m my mind I am accountable for them.

My counsellor then asked “are you though?” meaning that if they are a result of autism, then I’m not responsible. I think that I am, in as much as I can understand and learn from these behaviours – learn better ways to manage the feelings that caused them. That’s a good type of accountability.

I tried to explain that my husband takes a behavioural view of things and completely denies any autism. The counsellor says that this wasn’t just a few things in common, it’s an enormous cluster of symptoms.

A typical Taurus?

I must own that there have been stubborn because my husband really does think so much faster than I do in a conversation, even a non-emotional one, although the emotional ones can’t feel like he’s horrifically fast! So I dig my heals in and refuse to talk further. This isn’t shutdown, that is stonewalling.

Abigail Thorne said in one of her brilliant videos (the one about Judith Butler) when she explains why conservatives don’t listen because they think that: “listening is an act of submission”. I’m afraid I’ve been guilty of that.

Also, I might be a Taurus, but I don’t believe in star signs!

Living on a volcano

While I was working on the wheels, he asked me to draw what conversation with a friend was like. I thought either a beach or a forest. Both are calming places for me, but I think that forests are much calmer. It was an impressive work of art, in which the artist (moi) depicts tranquility, reflection, and the restorative power of nature. I said “this represents calm”.

Then he asked me to draw what a conversation with my husband was like. I thought I was going to draw a thundery sky. Instead I drew a volcano in full eruption. “This does not represent calm”. We both laughed.

Actually, as I reflected on the image I had created, I felt quite distressed. What feelings was I trying to express? Was the forest and the volcano both me? There’s fury and destruction in a volcano. Pent up energies from the depths of the earth. Are those energies mine it my husband’s? Is only as I write now that I can really put words to some of the feelings. At the time I was mute and teary with the confusion over the feelings.

One of these feelings I realise was despair. That’s one reason why I self-harmed and that I still, from time to time, feel like life is just too much.

My counsellor asked “is it possible to get from here [pointing at the volcano] to here [pointing at the forest]”.

I do not know. Maybe that’s the reason I feel despair.