ambly - Network

Content warning:Essentially a diary entry about my day out, submitting government forms in personThe place was very busy so I was lucky to...

Content warning:Essentially a diary entry about my day out, submitting government forms in person

The place was very busy so I was lucky to find a seat on the far end. (I can't ask people to give up their seat for me.)

Unprompted, the person serving me confirmed that my X marker is what prevents me from applying online. It seems like, internally, a lot of people are just casually aware of this. They said something like, "We're still running on a DOS system. 😅"

They skimmed my form and was very surprised, "Wow!"

"What?"

"It's just that you have Chronic Fatigue and your GP only gave you a 3 month permit."

"Oh, that. We have no idea what I have, and it kinda comes and goes. Kinda? Maybe not. Anyway, that's just the closest description they could think to use."

While waiting for them to process it (everything always takes a long time) I said, "I'm okay, but I'm just going to crouch down on the floor for a bit so let me know when you need me 🥲"

Oh, but some good news is that I was told the 3 month period starts on the day you submit the application, not the day your GP signs the form. So the fact I couldn't submit it for a week was only detrimental in that it delayed the start time. Still, however you apply you still have to wait a week for your permit to be posted to you, so I'm gonna miss out on some time anyway.

The outing was hard on my body. I had to go out anyway so I figured I'd do some other errands, including getting my phone fixed and I didn't know how long that would take so I got public transport rather than driving. It's always a gamble, but I always want to get as much done as possible to save me from having to go out multiple times.

I got some masks at the chemist and had one of those all-too-common interactions where you're heading to the counter to pay and someone else is, too, and they not-so-subtly make an effort to get there before you. It's whatever, but also such a bad look for them when I'm using a mobility aid?

Then after all of that the elevator at my local station was out so I had to walk up the stairs. At the top I needed a few minutes so leaded against the train schedule screens, very out of breath, and some guy asked if I was okay. I said the stairs are hard today and he said I should have used the elevator.

I had quite a good weekend, and even went dancing. And most days at home are just fine. I was hesitant about applying for another permit because I thought I was getting better. I might be (still very TBD), but I had such a difficult time with even the slightest of inclines on this outing that it helped fight my impostor syndrome 🦾

Me *choosing which gender marker I want on my birth certificate*: "Yeah, I'm gonna pick the most complicated option because I find...

Me *choosing which gender marker I want on my birth certificate*: "Yeah, I'm gonna pick the most complicated option because I find it euphoric having my weird body situation acknowledged as not fitting neatly into old, limited categories of representing people! Systems are terrible and I'll take any chance I can get to mess them up! 🦾🦾🦾"

Me *dealing with the consequences whenever I have to interact with said systems*: 🤣😂😅🥲😭

#LiteralBinarySystems #NonBinary #Agender #Indeterminate

Content warning:Dealing with government systems while non-binary (frustrating, but hopeful?)Last year I needed a temporary mobility parking...

Content warning:Dealing with government systems while non-binary (frustrating, but hopeful?)

Last year I needed a temporary mobility parking scheme permit so I could park in accessible spaces, and take advantage of looser timed restrictions. My mobility was very bad. I still felt undeserving because imposter syndrome but whatever.

I went to submit my GP-signed application online but it didn't work. I was doing everything right, but it wouldn't accept any of my documents in the authorisation process. I would get a mismatch error.

My sex marker with Service NSW is "X" and I assumed that was messing something up in the back end.

I called support and they told me it 'should' work, but maybe it's not because it was my first application. That didn't make any sense but I eventually found time and energy to go into a service centre to apply. It took quite a long time for simply dropping off a form.

Now I need another permit. I got my GP to sign another form and I went to submit my application online and got the same error.

This time the support person essentially confirmed my suspicion that my sex marker is likely what is causing problems. They also confirmed that, as I don't have time to go to a service centre until next Wednesday, the delay means I have a week less to use it once it finally arrives. (The three month timer starts from the date my GP signed.)

My mobility issues mean it requires a lot of work and energy to go to a service centre and submit this, and I'll need some recovery time. I'm supposed to be doing other things next Wednesday.

Anyway, I submitted a formal complaint, casually used the word "discrimination", and mentioned that this is going to become a bigger problem once self-id laws come in from July 1 so they really should fix these sort of errors rather urgently.

I gotta wait up to 20 days for a reply, which means I probably still need to go in person next week because I need this asap. I just hope this small effort can lead to better overall care for the next generation of people with X markers that don't play nicely with badly-designed systems.

Content warning:Health sadsI'm having a terrible time this week.After a pretty good January, my body situation is rapidly deteriorating....

Content warning:Health sads

I'm having a terrible time this week.

After a pretty good January, my body situation is rapidly deteriorating. Fatigue is extreme, the weird head sensations that stopped by December are back, my breathing problems may have peaked last week but they're still very bad a few times a day.

I can't go into the office. Leaving the apartment is a risk. The wheelchair that I can't use by myself because I lack the energy is kept in the back of the car again for when I need it. I never get headaches but I've been up for almost two hours waiting for paracetamol to kick in and deal with the cavity behind my right eye (update, it's finally giving me some relief).

I have often been laying in bed with my eyes closed and feel uncomfortable, like my body is not heavy enough to melt into the mattress properly, and like the world keeps shifting around me.

I managed to work 4.5 hours this week. I intended to work tomorrow but now I'm doubtful because of sleeplessness. I'm worried about using up too much sick leave because "what do I do if my symptoms actually get bad?"

I am still completely unable to describe any of my symptoms in a useful way. Possibly related: none of the many specialists I have seen have been able to adequately explain or diagnose any of the things I am experiencing.

The rational part of me knows that this week (and a bit) of symptom severity could just be related to how much I have been pushing myself recently to support things that are important to me. This rationalisation may also just be a coping mechanism.

I have been coping incredibly well, generally. (The tone of this post is rare.) I really don't know how I do it.

Mardi Gras is coming up and I may not be able to attend many (any?) social things, even just chill ones, and that's kinda sad. But I think it's more the fact that it will be the anniversary of getting sick that is making me despair.

The chronic illnesses have settled deep within my bones. They'll be with me forever, through sickness and unhealth.

I had an exhaustion crash today. I've been pushing myself way too hard. It's only temporary. And it's important. My body is...

I had an exhaustion crash today. I've been pushing myself way too hard. It's only temporary. And it's important. My body is suffering, though. And I still haven't internalised a lot of the strategies I'm supposed to use.

I can't help but think I'm doing this to myself.

I finally got to a place where I have a nice HRT regimen that is doing what I want, but that includes a near elimination of all testosterone because I have an irrational fear of it restarting hair loss - and the subsequent dysphoria. (I know there are ways around that. It's just even more trials and patience and everything feels like a trial lately.)

I've been using my walking stick going to work for the past week, and I barely made it home today.

And dancing season starts in two weeks! *crying emoji*

Content warning:Question about progesterone side effectsI was taking progesterone orally, about an hour later I would often (but not always)...

Content warning:Question about progesterone side effects

I was taking progesterone orally, about an hour later I would often (but not always) get the weird effect of... unfortunately, I am very bad at describing things but I'll try.

It's like the very early stages of being tipsy. I was using the term "groggy" for a while but that implies sleepiness and less coordination. I feel a normal amount of awake and I'm thinking a regular amount of clearly. It's a lot closer to vertigo than dizziness, but not really either. It's like my frame rate has dropped slightly. I notice it more when I'm moving around, or moving my head, but if I'm still and watching TV on the couch I can still perceive something is slightly off. I don't think anything is affected but perception, though that in itself can affect my mobility and coordination. It's constant, not triggered by getting up like light-headedness is.

Official side effect lists don't mention any of this, but people do say it can make you very sleepy so take it before bed. (I don't think that it does for me.)

Anyway, this hadn't been a problem because I'd go to bed shortly after, and I'd wake up long after these effects had worn off.

The new issue is that I started taking it rectally about three weeks ago, still at night, and today is the second (non-consecutive) day where I've been experiencing what I think are these symptoms during the day. Last Friday it lasted maybe the full day, with the effects strongest maybe around 3pm.

Maybe I'm taking it wrong? (Online descriptions vary in wording and are difficult for me to understand.)

Or maybe they are unrelated symptoms. I am bad at remembering past physical experiences, but I occasionally (often? I don't remember) felt something similar this last year while I also had a whole host of other long-covid symptoms. I wouldn't be able to confidently say whether it was the same or not.

This is not a huge concern, but ideally it's good not to be feeling this during the day?

I guess I'm wondering if anyone else has experienced this from progesterone, and if so what they think may be happening in our bodies to trigger the sensation? It could help me work out what to do about it.

#HRT #Progesterone

Content warning:Discussion of HRT Exacerbating Chronic IllnessesBut hey, I don't know if this is true.Now I'm taking progesterone...

Content warning:Discussion of HRT Exacerbating Chronic Illnesses

But hey, I don't know if this is true.

Now I'm taking progesterone rectally the hope is that my body will be able to use more of it over a more consistent time, and maybe this will assist with testosterone suppression and keep it under 2.0 nmol/L. I hope so because I would prefer not to take a blocker if I can help it.

I have my next blood test in 3 months. The hope is that my testosterone levels will be lower and I can compare all of my hormone levels with my general health experience leading up to that point and find some sort of correlation. For science.

Bonus for reading this far:

An additional pointless exercise I did this afternoon was look at all the hormone ranges for cis women so I could see what my own levels most closely map to.

Apparently my hormone profile means I'm living constantly in the early or late luteal phase?

This quite possibly means nothing useful.

Content warning:Discussion of HRT Exacerbating Chronic IllnessesTo summarise my current theory:* In a lot of cases, Ehlers-Danlos Syndrome...

Content warning:Discussion of HRT Exacerbating Chronic Illnesses

To summarise my current theory:

* In a lot of cases, Ehlers-Danlos Syndrome (EDS) is related in some way to ME/CFS. Hyperflexibility can reduce the ability of the brain to communicate clearly with the rest of the body.

* I have a flavour of EDS which includes various kinds of hyperflexibility. It's relatively mild.

* A body's level of hyperflexibility is related to hormone levels. eg. higher testosterone can reduce flexibility.

* Women are more likely to be diagnosed with things like EDS because the symptoms present more clearly.

* Women are more likely to have autoimmune diseases because hormone levels make them more flexible and any genetic predisposition is more likely to be expressed.

* When I got covid in March, it was the first time I was sick since starting HRT. My body was different - specifically, my testosterone level was < 0.1 nmol/L so my EDS symptoms were accentuated - and dormant predispositions were unlocked.

* Covid is a particularly bad thing to be infected with and it messed with much of my body. I'm still fighting it.

* Since I stopped taking a T-blocker (cypro) in July and switched to monotherapy (pellet implants), my T levels slowly rose. In October they were at 0.4.

* I started taking (oral) progesterone in October and it wasn't sufficient to help suppress testosterone. My level kept rising until January when it reached 2.0 nmol/L, the top end of the 'normal' range for women.

* My symptoms have been improving since October and this helps to explain at least part of why.

Content warning:Discussion of HRT Exacerbating Chronic IllnessesOkay, so coming back to this post from 6 months ago where I raised the...

Content warning:Discussion of HRT Exacerbating Chronic Illnesses

Okay, so coming back to this post from 6 months ago where I raised the possibility that many of my new body problems may be due in part to HRT, I have a few updates.

Post-viral fatigue is a lot like ME/CFS, but it's different in some ways. I am pretty sure I have the former but I'm not sure about the latter. I have never been tested or diagnosed.

I am fairly certain I have POTS, as my pulse regularly increases by between 30 and 60 when I stand up. I have always been like this and just thought it was normal? I don't faint so never saw it as a problem.

Early last month I started suspecting I may have EDS. I went through the criteria myself and ticked a lot of the boxes. I have to wait until June to see someone about it.

In general though, a lot of my long-covid symptoms have either gone away completely or only seem to come up rarely, in times of high stress. My body is generally a bit tired, but I don't really feel 'fatigue'. This is good! (Progress! Recovery! Tentative hope!) And the weird head sensations I experienced kinda went away in late November to early December. (This is the most positive change, because I didn't know what it was and it worried me the most.)

I watched the documentary Unrest (2017) last night. It was great. (I cried a lot.) I then looked at at later blog posts from the producer/director about how she had a sudden recovery after cranialcervical fusion surgery and tethered cord release surgery. These aren't going to help most people, but interestingly these were related to hypermobility (possibly due to EDS).

One of my EDS symptoms is that I can make my thumbs touch my wrists. It's a slight strain but I can do it pretty easily.

... or at least I could do it last month. I no longer can.

I got my blood test results back last week with my recent hormone levels which showed that my testosterone level had increased to 2.0 nmol/L, and this all started to paint something of a picture about a possible theory about what may have happened to me last year.

Today I went in for a consult at a hair removal place predominantly frequented by trans women.The (cis) person I spoke with was nice, and...

Today I went in for a consult at a hair removal place predominantly frequented by trans women.

The (cis) person I spoke with was nice, and made some (fair) assumptions about me, with phrases like: "We just want to help you become the woman you are." Then when I was leaving and asked where the bathroom was, I was led directly to the women's one.

This is a weird kind of gender euphoria. I'm not a woman, but the radical acceptance of "you belong here" and not at all feeling weird about using the women's bathroom was just nice.

I guess I just like feeling invited, or welcome.

#TransJoy

Content warning:smaller update about progesterone administrationOh, I guess the other update is that after taking progesterone orally for...

Content warning:smaller update about progesterone administration

Oh, I guess the other update is that after taking progesterone orally for three months and then getting my blood test to reflect how that's going, I've started taking it rectally. This is because some people on the internet said it was better - your body gets to use more of it, it stays in your system longer, and you avoid some of the negative mental health side effects.

I haven't felt the dizzies since, so maybe that's related.

I asked my GP about it and he didn't say not to do it, but he did mention that official Australian medical advice is that this method is "not as stable" for absorption.

I'll stick with it for at least a while and try to see if I notice any differences. That's perhaps unlikely, though - because of the poor interoception.

Content warning:Medium length post talking about HRT and breast growthIt's time for another #TheminisingHormoneTherapy #HRT...

Content warning:Medium length post talking about HRT and breast growth

It's time for another #TheminisingHormoneTherapy #HRT update!

I've been taking progesterone for 3 months now. It's going fine. If anything I don't notice a difference (except for the occasional dizzy times). However, I do feel good about taking it for a number of health reasons I heard about that may or may not be true.

It has also been 6 months since my pellet implant. I find out the results of a recent blood test in a few days. I'm excited about getting to make a medication plan again.

It's so hard to tell if my chest has gotten bigger because I have trouble recognising visual differences. Maybe? I haven't been wearing a crop top this month because of my tattoo and going down stairs feels... a lot more bouncy than I remember. Also: it's possibly more fun than before to put my hands on my chest and shake my tits up and down? (Everyone does this, right? Not just autistics?)

To be clear, this isn't a big important thing for me. I dunno, they're neat though. And I just like any body changes because they make me feel alive.

One of my doctors (who I won't intentionally go to again) said, sternly, the only reason a trans person should be on progesterone is for breast growth, so I might be internalising a desire for bigger tits as a need to medically justify keeping my prescription?

Maybe I'm also trying not to get my hopes up because I don't want to be disappointed by an eternally, relatively small chest?

Why are body changes from puberty and their resultant social significance so complicated to reconcile in your brain?

You never hear teens talking about this!

One positive update is that I had a very bad body time just a few weeks ago due to a cancelled flight. Everything went wrong from there and...

One positive update is that I had a very bad body time just a few weeks ago due to a cancelled flight. Everything went wrong from there and I was (physically) alone and couldn't advocate for myself and my brain overloaded. I could barely walk to get a taxi and I seriously considered just trying to sleep in the terminal.

My partner suggested I get one of those hidden disabilities lanyards for such situations, to flag that I may need assistance. I was hesitant at first (if people ignore it, will I feel worse?) but friends reassured me about their experiences and I got one.

Now I feel empowered to be assertive when I need to, and I will be unstoppable! 🦾

I do plan on posting more here.But what do I write about?In the past ten months I've slowly learned to be more chill, and relax, and be...

I do plan on posting more here.

But what do I write about?

In the past ten months I've slowly learned to be more chill, and relax, and be less active in learning and making new things. I don't know that I like this change, but I kinda had to for health reasons.

At least, I think? I've been getting a lot better in the past ~6 weeks, and I hope at least some of that is due to the work I've put into resting and healing, and it's not all just coincidence.

I kinda miss having big projects with deadlines to stress about.

I am going to a family BBQ in a week. I just casually started thinking, "Huh, I could actually wear this outfit if I wanted...

I am going to a family BBQ in a week. I just casually started thinking, "Huh, I could actually wear this outfit if I wanted to."

Unless they've seen my instagram stories they've never seen me in a dress. (I didn't start liking them until February, and they all live interstate.) It'd be a good way to help normalise my evolving fashion choices quickly with very little effort.

And maybe it'll help everyone get my name and pronouns right =P

Being non-binary is fun because you don't really have a clear roadmap for anything so you continuously discover unexpected sources of...

Being non-binary is fun because you don't really have a clear roadmap for anything so you continuously discover unexpected sources of affirmation.

I rarely go out to pubs (bars?) and I usually use the men's bathroom in public because: it's complicated.

Last night I went to a work event in a pub that was just full of normal people and the reduced level of bathroom cleanliness etiquette that usually comes with that. And drunk men are just so weird and loud and overbearing and uncomfortable to be around.

Rather than let it trigger dysphoria, I asserted my dominance over the space by confidently reapplying lipstick in the dimly lit bathroom mirror, crouching down and resting a hand on the sink because I was a bit too tall in my heels.

And then I put my mask back on.

I had a weird experience the other night. I was talking with a few friends on the kitchen floor about intersectionality. I offhandedly said...

I had a weird experience the other night. I was talking with a few friends on the kitchen floor about intersectionality. I offhandedly said something like: "For example, I have male privilege, even though there is so much discomfort around that for me".

Someone then laughed and said, "Wait, you have what?!"

It was always a "fact" I thought about myself but I apparently hadn't thought about it properly since publicly coming out? Historically, sure, but now my name is ambiguous, my dress styles lean toward "feminine", and I don't even know how much my voice ever suggested "masculinity". (Ugh, I hate using those terms.)

Have I lost my male privilege?! That could be bad for safety reasons, but it's very affirming so I take it as a win.

#AmblyPics

For the record, this is what I was wearing. (I got the dress at an op-shop that day for $15!) (CW for eye contact):

Some quick updates before I go back to work:* I've had a lot of ups and downs health-wise. Nicotine patches seemed to do wonders and I...

Some quick updates before I go back to work:

* I've had a lot of ups and downs health-wise. Nicotine patches seemed to do wonders and I had three whole weeks without a walking stick! Then my situation went back to "unpredictable" and I'm trying new things before just reverting back to patches and hoping they work longer this time.

* I'm helping run a mask decorating workshop for International Day for People With Disability. It's exciting! I'm probably going to be paid as an "artist" for the first time?

* I'm struggling to think of myself as an "artist", because I simply create things and play around ~artistically~ and I don't know what words mean until I think about them too much and then if they're complex I often feel like I understand them less. And "art" is a very complicated word.

* I thought about the word "disability" properly for the first time and realised... I'm disabled? And have been for at least most of my life? Wild! This is positive news as I like self-discovery. Still working out the best language to use around it.

* I'm struggling with community safety and consent regarding infection risks. I'm working on a way to talk about this with people I see IRL.

* I reached my 18 month HRT milestone 🎉 I've been too busy thinking about other things to properly celebrate it. I'm happy.

* I have booked myself in to get a new tattoo! It's of a monster that could be described as a "harpy" and I fell in love immediately when I saw it was available.

Content warning:Discussion of facial hair removalI want to get rid of my facial hair.It's annoying to shave and I get mild dysphoria...

Content warning:Discussion of facial hair removal

I want to get rid of my facial hair.

It's annoying to shave and I get mild dysphoria from seeing stubble and I like the look of my clean face.

However! Every now and then I look back of photos of me with facial hair and I think it's a good look and I think it'd be a shame to get rid of that as an option when I want it.

But I rarely want it as an option. Is that a good enough reason not to take it away?

And there is a pattern with all the facial hair photos I do like: I'm never smiling. But I smile a lot IRL so the look I like of a brooding, stoic figure looking cool (these are all probably not quite the words I am after) isn't real except in photos, anyway. So I wouldn't be getting rid of anything real.

Plus, facial hair makes it harder for masks to seal properly and therefore it's also a safety issue.

Maybe. I don't know. Whenever I have this conversation in my head, which is often, I feel like I have both come to a decision and that I will never decide.

I am bad at making choices. And this one is expensive and forever. (It would be less stressful overall if I could just make up my mind though...)

#TheminisingHormoneTherapy

The weave by itself is a little loose, so running an elastic through the middle pulls it tighter and it can stretch about 10%.This makes it...

The weave by itself is a little loose, so running an elastic through the middle pulls it tighter and it can stretch about 10%.

This makes it more comfortable to wear, and is less likely to break from stress in places like the torso band.