[dia]gnostic faith

ptsd-wordmapA significant day for me, today.

The first time my PTSD got bad enough, for long enough, for someone to suggest that this is what it was, happened around this time three years ago. Somebody who really made me anxious to be around had just moved into the house I was sharing, and then I went to visit friends in Paris, and came to pieces while I was over there. I thought I was having a thyroid incident at first, as my pulse rate refused to drop below 100. For several weeks. But after having a load of blood tests, the doctor gently suggested that it wasn’t a biochemical problem I was dealing with, but perhaps PTSD.

I managed it down, over the course of a few months, with help from a good therapist. While all this was going on, I was also in the process of coming out to myself finally as transgender, and began my transition the following spring. When I finally went onto a proper dose of Estradiol, 15 months after that first PTSD incident, my symptoms became suddenly very acute, and have remained so since.

Over the last 20 months since that happened, I’ve been learning to manage my fears, my hypervigilance, my flashbacks, and so on, to some extent, and to treat myself with a necessary gentle love in the face of their relentless presence. I have also spent that last 20 months realising, in retrospect, that I have been dealing with this basically since I hit puberty (it was brought on in the first place by sexual abuse). I hadn’t known what to call it, and it generally erupted very sporadically, and I just thought of it as occasional panic attacks, or a sense of desperation.

But it’s been there all along, and somehow, when I released my true gender-self from her protective coma two years ago, this came to the surface with a whomp! and demanded to be acknowledged too. A heavy price to pay, but I’ve been willing to pay it, since actually what I’m buying for that price is a genuine experience of myself, finally. And so I can engage with that genuine me, and help her to heal, to be female in body to go along with the rest of her, and to face my fears and damage with some love, finally.

And over the last 20 months, I’ve been wrestling with the Official Psychiatric Regiment of the NHS to try and get a definitive diagnosis, and today that happened. It took them long enough. They wriggled and jiggled over all that time, and wanted to call it a non-specific anxiety disorder and suchlike, though the therapists who were working with me on a regular basis were all very confident that PTSD was what I was dealing with. Somewhere in the process of transitioning over the last two years, I’ve become more assertive (who’d have thought it? I found out I’m valid!) and I kept asking my GP to keep asking them to do something about all this, and today is the overdue outcome.

Why does it matter? Because without an Official Diagnosis of Post-Traumatic Stress Syndrome/Disorder (as opposed to some wishy-washy “shows symptoms related to…” diagnosis), it’s been absolutely impossible for me to get any direct help from the NHS with treatment or support for this. I’ve been incredibly fortunate to have regular therapy given to me by the gender clinic, who saw a need and responded to it. I’m so grateful to them. And I’m also incredibly grateful to the two (women) doctors at my local surgery who between them both looked after me when I was in a mess, and championed my cause in getting referred for a proper diagnosis.

So now that I’m officially declared to have this Primary Mental Health Care Issue (or whatever this week’s bargain jargon is), the NHS are actually going to come up with a plan to help me overcome some of this. Which really matters. But to be honest, another reason why this matters is a rather private one. Quite aside from me being tired of struggling to be taken seriously by the health service, I was all too aware over the last three years of a number of my friends (the more fundamentalist allopathy worshippers especially) quietly thinking to themselves “Eh, she just thinks that’s what she has…” – because particularly when it comes to mental health issues, people take a clinical diagnosis (or lack of same) with devout seriousness. And knowing that some of my friends were thinking at me askance like that has been painful, and unavoidable until now.

The thing is, though, I’m strongly motivated to get help and become more functional and therefore reliable than I am at the moment, because I’ve lately developed a sense of direction, concerning what I want to do with my life once all my surgeries are over next spring and I can start getting on with life a bit more normally. I want to get more involved in LGBT youth work, and especially in supporting and mentoring young trans* folk. I’m making moves towards doing this on a formal voluntary basis at the moment (I’ve sort of drifted into doing it informally over the last year anyway), and one thing that’s obvious is that as I get more into this, there are going to be times when I have to deal with other peoples’ conflict and contention, and at the moment, that’s very hard for me. So this is my main practical reason for wanting to become more robust and functional – though of course I’d more simply just love to live a more normal, less fear-constrained life than I do at the moment.

Our culture puts so much faith in Psychiatry – which really isn’t the science they’d like to think it is. It does feel like a religion, and I feel like today I was initiated by a priest (or in some weird way absolved of the sin of “having an undiagnosed ailment”).

lucy-psychiatristThere have been times in my life when I’ve given medical consultants the feedback that they need to put the “agnostic” back in “diagnostic”, when they’ve been too certain that I had something I knew I didn’t have, and so were not treating the thing I knew I had. But this is one of those situations where Unwavering Faith on the part of a Psychiatrist is a requirement for me, in order to get the appropriate help.

Funny old world.

A lotus eater writes

tramadol moleculeI haven’t said much here lately, and there’s a reason…

Since around new year, I’ve been in an increasing amount of pain from my waterworks (as we Brits like to refer to them, euphemistically – a.k.a. my chronically scarred-up urethra). I’ve been waiting for some help with this, but have fallen victim to caution at the hands of the consultant.

He was, quite reasonably and laudably, concerned that any surgery he performed to alleviate my problem (either temporarily, or more permanently as was being proposed this time) might impact on the gender affirmation surgery I am due to have sometime around the end of this year.

This would have been a Good Thing, except it has led to a protracted and very inefficient “conversation” between him and the gender surgeon, which has resulted in nothing happening for 8 months.

Things are looking up; they’ve decided to do an interim urethrotomy – which is basically what they’ve done five times already over the last 40 years, which is to do a rebore. It’s a self-perpetuating treatment, which is why they wanted to do something different this time, but… anyway. This should happen sometime within the next month. Good news.

Meanwhile, however, I’ve been taking Tramadol for seven months now. Tramadol is an opiate, indicated for “moderate to severe pain”, which is a pretty fair description. When I was first taking it back in February, one 50mg capsule would knock me completely on my arse for the day. This week, I’ve had to raise my dose, again, this time to 5 capsules a day. The body adapts, the painkilling efficacy wears off, and then you have to ramp it up to get the same effect. I’ve had to steadily raise my dose over the last few months – partly due to acclimating to the current dose, but also because I’ve been in steadily increasing pain, as my system gets more and more overworked, trying to get the same amount of pee through a narrower and narrower conduit.

So it goes. I’ve needed the pain relief, and I’m looking forward to not needing it once they perform this urethrotomy. However, Tramadol, like many other opiates, comes with a price. There are side-effects, and it’s clinically addictive. It’s also psychologically addictive, and I’ll get to that.

The side-effects are mostly manageable through diet (constipation avoided through eating lots of fruit and salads), and more medication (the increasing dose has made me nauseated, especially dramatically increasing my travel sickness, so that I need an anti-nausea drug to get through the day, and a different one to travel by car, bus, or train).

The worst thing, though, is it makes me not care very much. There’s this word… lassitude: Weariness of body or mind; languor; lack of energy resulting from fatigue; disinclination to exert or interest oneself; an instance of this.

Especially every time I’ve had to raise my dose, I’ve had a week of being unable to do very much at all apart from blob about, watching banal telly and eating and sleeping. It’s like being perpetually stoned (and I should know, I was that hippy for two years solid in my late teens). I’m trying to sort my life out somewhat at the moment, in the face of persistent PTSD, and this is really not making it any easier. It really does remind me of being that unmotivated and miserable teenager I was back then. Nasty. At least I know what’s causing it, and can sit lightly to it.

And it’s going to be a real bugger to come off, once I’ve had my surgery. Because one thing it’s given me that no other medication has touched, since my PTSD kicked off really acutely 18 months ago, is a level of calm and non-anxiety that’s incredibly welcome. It’s going to be very hard to let go of that, and I’m probably going to need some pharmaceutical help not to go off like a firework when I stop having this as a crutch.

So I have a real mixture of feelings. Here I am, incredibly grateful to be in a country that gives me free healthcare (including treating my gender dysphoria and paying for my gender affirmation surgery) – but they’ve made me wait half a year in increasing pain for no real reason, and made me addicted to a drug that I’m going to find very hard to give up. If it weren’t for the Tramadol making me not care very much, I’d be really pissed off right now.

I’m just starting to contemplate a future after my various surgeries are over, when I’m more physically reliable, in which I really want to get involved in LGBT youth work and advocacy, ideally as a livelihood in the end. And these opportunities are starting to come and meet me halfway, now that I’m stepping out and looking for them (a local group is looking for volunteers, and will offer training so I can get a qualification as a Youth Worker). And I’m really afraid (or I would be really afraid, if I weren’t full of opiates) that when I come off this stuff, I’m going to become more dysfunctional again emotionally, and the things I’ve been really enjoying doing will slip out of my grasp again.

And the thing is, I know I’m afraid of this, but at the same time, I’m pretty sanguine, because in the end all I can do is ride the present I’m in, as it moves along in that direction (gestures vaguely towards the future), take it one thing at a time. I know how I want to be, and I’m taking increasingly assertive steps to let the NHS know what that is and persuade them to give it to me (they’ve been dragging  their heels about me having EMDR therapy for my PTSD, the only thing that’s really helped me so far).

Anyway, in case like me, you’ve completely lost the thread of this by now, the point is that Tramadol has made me so full of lassitude as to find it hard to want to write things here. But fuck Tramadol, eh?

Fluctuat Nec Mergitur

foundering-ship

Pishapaisha

beechwoodMy grandfather Saba (who was in a sense my only real parent) used to play a card game he called pishapaisha, which it took me years to realise was his Ukrainian way of saying peace & patience. I don’t remember how you play it, and that’s not the point anyway – just that as a kid, I loved the name of this game. As a younger kid, because it sounded funny, and similar to pischer, someone who pisses themselves – and then as an older kid, because peace & patience is a magical incantation, a wish.

I’m in need of both, at the moment. Peace within a jangling mind, and patience with myself.

I have, I am reliably semi-informed, Complex Long-Term PTSD. I say semi- because I await what is apparently a necessary full diagnosis at the hands of a Proper Psychiatrist, to validate the experienced observation of a number of psychotherapists who have known me very well. Anyway, lately, I’ve been feeling as though I’d learned to manage this condition well, and had probably unconsciously started to feel as though I’d somehow “overcome” it. Ah, context is everything…

Over the last few days, I’ve found myself dealing with contention on a couple of online forums, on one of which I’m one of the moderators. It’s all blown over now, and people are getting on better with themselves, and each other, and all that, and I feel like I responded as well as I could. But for the first time in a while, my Inner Meerkat has kicked off in a way that doesn’t fade after a short while. So here I am, a couple of days later, feeling like I’m trapped within a hyperalert and anxious body/mind.

My experience as a Buddhist teaches me… what? Well, that how I got here is not as important as how I respond to now. I’m trying to sort out the layers: I feel angry, once again, with the people who landed me with my PTSD through their violent actions; I feel scared and overwhelmed and exhausted, because my system is flooded with adrenaline; I see myself looking for things to be anxious about, and conveniently finding them; I feel sad and despondent, and wish to be different from how I am.

peace & patience

Fuck the cards I was dealt. Being like this is not my fault. Being like this deserves my compassion. Though I long to be someone who makes a positive impact on the world, I need to remember that I am part of that world, and that if all I can do today is make a positive impact on myself, then I am succeeding. Craving for a state that’s different from the one I’m in just sets me at odds with my own self, which is painful and unnecessary. So let’s stop doing this, and sit down in this experience, be with it in the forest. If that’s all I’ve got, that’s a fuck of a lot.

I’m sorry if this all sounds a bit encounter-group or Californian (well, apart from the expletives) to you who aren’t me. I’m just trying to be honest. Minds are efficient things, sometimes to their own detriment. Someone who is abused when young will work out for themselves why they deserved that, and then base their life, to some extent, around that created belief… until they get to let go of it. And you don’t let go of a lifetime’s habit just like that. So here I am again, reminding myself that I deserve to feel better than this, and that if I don’t feel better, I’m deserving of my own love, not my own impatience and disapproval.

peace-rainbowI’m writing this for me, but also for you, if this is something you ever go through:

Nobody deserves to suffer.

Here, may there be love.

*

*****

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Actually, now that I’ve posted this and had time to think a bit more, I want to add something to it – the real reason why my hypervigilance got kicked off in the first place. It’s been exacerbated by the online contention thing, but what stirred it up in the first place was a big affirmation. I got invited to participate in a panel discussion next month on the subject of “How can we best support LGBT young people?” with some people on the panel who are much more important than I am.

And as often seems to happen when I receive affirmation or praise, my Inner Dad kicks in and engages the Self-Sabotage Device. I have a visceral fear that I will be publicly exposed for the <insert whatever the fuck it is here> that I “know I am”. I will not be good enough. I will let the side down. And so forth.

I’m so fed up with this Device – every time I feel like I have a positive place in the world, this Inner Dad tells me to self-destruct. Go fuck yourself, Inner Dad. I am not who you wish me to think myself. I belong here, happy.