Mental chicken

I seem to be coming out of the horrible depressive episode, which is nice, and I’ve managed to Get Stuff Done, which is a very good sign; Went to the dentist last week (Verdict; I have a fine set of working-class British teeth. They’re yellow, they’re crooked, but they’re unlikely to fall out of my head any time soon) and have physio scheduled for the 2nd of December (Funnily, almost exactly a year after my last course of physio started) to which I will take along a photocopy of the fabled Physio Pack.

And, best of all, today I went swimming. Worked hard – Pulse didn’t drop below 140 for the entire session, lungs at full capacity, and although after a two-week break my sartorius is a bit noodley rather than being reminiscent of a mainbrace, my legs and chest have an appropriate amount of warm, heavy pain. So I felt good when I was getting out of the water, on wobbly legs, panting, hands shaking a bit as I knocked back the last of my waterbottle and chased it up with some morphine. Limped into the shower on a single crutch, propped my arse up on the tap, and gently soaked in the hot water. And listened to my fellow swimmers’ conversation;

A- “…Oh, well I just didn’t know what to do. You know that funny lass? The one with Tourettes or something?”

B- “Yeah”

A- “…Well, when I was on the way in, she asked me if she could borrow my hairbrush. Poor thing, I mean, she just didn’t know that you don’t do that sort of thing…”

My eyes opened.

B- “Oh, that’s awful. So embarrassing. What did you do?”

A- “Oh, well I didn’t know what to do, it’s just such a shame that she didn’t know that you don’t ask to borrow things like that.”

I had to interject.

“Or she could have done a bit of competitive sports.”

All eyes suddenly on me, at the temerity of suggesting a reason other than “poor invalid”.

“You know” I continued “How everyone on a team tends to borrow stuff off each other in the showers. Shampoo, goggles, hair ties. Brushes. It’s pretty normal, really.”

A got a bit flustered.

A- “But you know, all I could think was that she probably had nits. My kids had nits. Urgh.”

Well, thanks A, for assuming that an adult woman is going to have a parasite that’s usually confined to the heads of small children.

B continued washing her hair, now in silence. I think that she saw that this was not going to go anywhere good. I went back to washing, since I wasn’t really in the mood to deal with arseholes. I’d hoped that my silence and sudden fixation on my fingernails would do as a “don’t talk to me” signal. But no, A continued;

A- “So, what’s wrong with you then? Have you been in an accident?”

Me- “No, just very, very unlucky.” (Said with a very deliberate “please stop talking to me” downward note.)

A- “So, can I ask what’s wrong?”

I looked up from my fingernails, which I’d now been theatrically cleaning for about three minutes – Actually a really long time to pick your fingernails for – and decided to give her the potted version that basically leaves no room for further questions. What I wanted to do, however, was to tell her that asking that was about as invasive and upsetting as asking “Hey, why are you so fat? What made you fat? Is it genetic? Are you trying to lose weight?” but, no, I am inherently a gentleman, so didn’t.

Me- “It’s called Ehlers-Danlos syndrome. It basically means that all my joints dislocate all the time. There’s no treatment, other than painkillers. I’ve always had it, but it only got bad a few years ago. You get used to it, eventually.”

And I hoped that that would be the end of it. Instead, I got this;

A- “Oh, that must be horrible (fine, whatever. Thanks, if it’s sincere). I suppose that swimming must be good for you though (It is, but that’s not why I do it). It’s like the one way that you can keep up with us, I suppose, like, look at all the things that we can just take for granted, but even in here in the showers, and you’re standing on a crutch – Is that because it’s slippy? I suppose you mustn’t be able to walk very far, it must be really difficult for you. But you can go really fast in the water so its almost like you’re really fit, but I suppose that’s just about the only thing you can do… You mustn’t be able to do very much else, I suppose you can’t go for a run. All this stuff that I take for granted. Have you got short hair because you can’t wash it yourself? It’s funny that you never think of things like that, like that you can’t get your own meals or tie your own shoes… But you’ve got all them tattoos, so you can’t always have been handicapped, it must be horrible not being able to look after yourself…”

By this point, I was gripping the handle of my crutch so tightly that I’d dislocated most of my fingers, which is good, because otherwise I’d have probably clocked her. My brain was filling up with static, to the point that I couldn’t really hear her. She was definitely going on at-length though. Just constant, long, repeated thinking-out of how hellish and pointless my life must be. No offer of help, either. When I got out of the shower, B offered to help me across to my bags, but A didn’t. A was perfectly happy to just dwell on how horible the life of a cripple must be, at a captive-audience of cripple who didn’t have the energy to tell her to fuck off.

Worst part is, I bet that she thinks that she was doing something good. I bet that she thought I was empathising. Or showing understanding. Or something.

That’s pretty much the nail in the coffin for me going to Sunday swims, though. I know I’ve joked in the past about how I was annoyed that my private coaching had somehow turned into Ladies’ Float And Flab Hour, and that I was the only one who seemed to understand how you get the most out of an exercise session (It does concern me that, even crippled, I’m as quick on my feet and more able to do static exercises like sit-ups and press-ups than anyone else who goes to these things) but there are more people who benefit from gentle exercise than there are who benefit from getting to do a proper coached swim, so it looks like I’m not doing those any more. Back to Thursdays and maybe Tuesdays, where everyon seems to understand that opining at someone about their life isn’t fair game.

But really, how advanced is that, as a social rule? I’m fairly sure that I knew by about age four that I wasn’t allowed to go up to people in the street and say “I bet that hurt” or “Why are you so tall?” or “Since you’re so ugly, I bet nobody likes you”. Why are some people so fucking rude?

Hands

Came back from the GP today, and spoke to my neighbour – My neighbour, who met me when I was a purple-mohawked 22-year-old lab technician, at the Big University and with all my life ahead of me.

Today, I picked my dog up from him, on my crutches, my hair last washed in October, wearing the high-vis jacket I found in a bin four years ago, because I can’t afford a proper waterproof.

“What does he say then?” he asked “Are you getting better? Staying the same? Getting worse?”

And I had to say “Pretty much worse”.

And then, you know, my heart just broke. He looked so sad. I don’t know what I would have done living here without him, he’s the best neighbour that anyone could ever ask for, and I’m basically giving him a life sentence of having to look after me. He walks my dog a couple of times a week. Last year, he was checking on me every day over Christmas, since I was trapped on the settee by a dislocated hip. He’s holding a few hundred grams of paracetamol for me, to make sure that I don’t do anything terrible with it.

Christ, everything hurts today.

Or sink, sink is fine.

So, last Wednesday I went to the baths. As usual. Swimming along as fine, as usual. Got a ping from the right hip, in the water, as usual, so hauled in to the side.

Felt pretty rough, so decided to get out. Gave my morphine to LT, told her that everything was normal but that it’d be easier if she held my morphine for me, since I was on paired crutches. Dragged myself through to the side, with the hip seizing up as I went, curled up in the showers… And couldn’t move my leg.

Crutched over to the lockers, started to get changed, covering the leg, and was standing up half-wrapped in a towel when LS (All lifeguards are going to be L+Letter, for anonymity’s sake) came in to give back the morphine. I told her things were basically all right, but with more pain and spasm than usual, but to come back and check on me if I wasn’t out in a few minutes.

By the time she came back in a few minutes, I was dressed, curled up with the dislocated leg sticking out like a dead spider, and howling. Things get a bit fuzzy from this point on.

I think either LS or LT phoned 111, and got an ambulance sent out. LS brought me the phone to get through to Dearest, but instead I got through to my best friend, who caught Dearest on Skype and sent him to me.

He arrived at the same time as the paramedics, who could give me nitrous oxide (and lots of it), but couldn’t reset my dislocated hip. Dearest, on the other hand, could.

Hip quickly reset, I was assembled onto a backboard, onto a stretcher, and wheeled out of the changing rooms. Information was taken, in the back of the ambulance, and I was allowed to go straight home. More or less, in bits.

So, since then, it’s been a week of morphine and misery. Debating never going back to swimming at all, since I’m increasingly causing too much trouble for the staff.

Ew, cripple sex.

Sorry. Just thought I’d get that thought out there before anyone else thinks it.

Right, yes.

I have a notoriously high sex drive. I love it. I have described it in the past as “That hobby that I can do when I’m too short on brains to do anything more complicated.” but it’s also a nice way of interacting with other people for the sake of interacting with them, or for having lots of nice physical feelings, or for feeling closer to the other person, or just to be nice to someone, or to find out a new sex-thing, or for all sorts of reasons.

And I am very, very aware of the importance of consent. Several years ago, the original shoelace-tier waited until I’d taken my evening medication, and raped me. That was a mess. Before that, an ex used to wait until I was so stressed and angry that I dissassociated, and then have sex with… Well, the other thing. I can barely remember. He stopped, when the other thing left him in a bloodied heap. Another used to semi wake me up in the morning, or at night, then pressure me into sex before I was fully awake.

And on a more personal level – I really hate the thought of having sex with someone who isn’t incredibly enthusiastic about sex at that time – Whether it be because they really want sex with someone now, or because they really want sex with me personally now, or because they want to try out a new thing, or give me a bit of a present, or try out a thing they’ve just heard of and thought I’d be good at, or whatever. I physically shrivel at the thought of hurting someone, or having someone be too polite or frightened to say “Actually, no, I’m really not interested”, or of continuing during sex with someone who has mentally checked out, but is acting the part so as not to offend me.

For the record, I know that sex with me isn’t always the easiest thing in the world.

I have Ehlers-Danlos Hypermobility. I can’t always support my own weight, or coordinate my movement. My joints dislocate easily, and at least my hips and shoulders, and usually my wrists, do as well during sex. Every time. Yes, I can put my feet behind my head. Yes, I can get my hands to places that you’d never normally expect to manage. But honestly, being alive and in this body all the time hurts, to the point that ninety eight percent of the time I’d rather just have a quiet wank in the company of nice people, and leave it at that.

I keep seeing a repeated meme in consent culture; “You can’t consent if you’re intoxicated. If you’re too high to sign a contract, you’re too high for sex”, and to a certain extent I agree that, if you’re beyond a certain degree of intoxication, you can’t consent. If you’re completely blackout-drunk, you can’t consent. There’s a big uncertain zone in the middle where you might really consent at the time, but where a sober-you wouldn’t consent. And then there’s where I exist, all the time.

I take morphine. A constant, low-level trickle from 20mg of slow-release a day, with more on top of that in the form of Oramorph – 10-30mg at a time. To be pain-free enough to even contemplate sex, I generally have to have taken about 20mg of Oramorph within the last half hour. At that point in time, I wouldn’t be able to sign a contract, drive a car, remember my seven times table or play chess. But it’s the only time I have in which to have really satisfying sex, that doesn’t hurt, that I enjoy, and that is practically possible.

Current thinking on consent means that, in order to toe the party line, I have to be celibate.

I don’t agree. I enjoy sex. I enjoy sex with other people, more than masturbation, and I want to be able to keep having it, even though I am usually “too intoxicated” by the “can you sign a contract?” metric. I have had a lot of sex whilst intoxicated which has been some of the most joyous of my life. I have experimented with new kinks and new partners. I don’t want all of that to be immediately grabbed by people with no idea of nuance who will scream “You’re in denial!” at me.

How’s it done? Talking. Endless talking. Discussion with anyone that I’m likely to have sex with which talks about what we both do and don’t like, and what consent and non-consent physically looks like whilst under the influence. Plans in advance of when it is all right and not all right to initiate sex. Discussions of the notable non-correlation of my physical response and my actual consent (Morphine can make you a little bit impotent, and conversely can give you inappropriate hard-ons at a slight breeze. I can be very up for it, but not quite up for it, if you see what I mean. Lots of lube and care needed). Slowly introducing any new sensation or position, and checking during the act whether we’re both fine with it. Gradually becoming more ambitious and fluid with repetition and familiarity and lots of non-verbal communication.

Not less morphine. Many, many years of painkiller avoidance has taught me that less morphine isn’t the answer.

So why does it annoy me so much, rather than just being another basically-good idea that gets lost in the nuance-free shouting of most internet discourse? “Nothing whilst intoxicated” is a good rule of thumb, isn’t it? Unless you’re really good at very honest communication, to a level of honesty that most people are scared by, just avoid the drugged sex and you’ll be fine. No big hardship.

But no. It’s not fine, because it’s just another thing which suggests that disabled people don’t have sex. It ignores that a fair number of us need drugs which affect our moods and judgement (Whether directly or indirectly) just to get through the day. We don’t need to feel lik, by having sex whilst continuing to take our medications, we’re doing something irresponsible or off-message. Our partners don’t need to feel like they’re probably raping us every time we have sex. If nothing else, it takes away our ability to define for ourselves that some interactions are consensual, and some are rape. The second person that I confided in, about having been non-violently raped whilst high on my own painkillers (Taken according to the packet instructions, thank you Tramadol), insisted to me that there was no difference between that and consensual sex with my partner. Repeatedly. Told me over and over that if I wanted to call ST a rapist and a bitch, I had to say the same thing about my partner. Until I was actually crying, and they were making sure that they’d won the argument with “I know it’s upsetting, but you have to accept that you’re being raped all the time!”

GPs, physios, and therapists over the years have been variously horrified, incredulous and disgusted that I was having sex at all. I’ve had one burst into giggles at my frustration at a medication which briefly destroyed my libido. I’ve had one actually say “Oh, but of course [loss of sexual function] won’t matter to you because…” and only stop when I gave her a stare that nearly made her combust. I’ve mostly just encountered dismissal and disbelief that my sex life could be a part of my life that I valued.

And this is because, in the public opinion, disabled people aren’t sexual creatures. We go to bed early, and drink cocoa, and have strange, beige appliances all over our houses, and wear ugly clothes, and socialise at carefully-shepherded daytime events. You’ve never known futility until you’ve tried to get a wheelchair taxi at 3am when you’re drunk. Our friends are angels and our partners are diligent carers, nun-like in their habits and acting as our chaste companions.

But yes, effectively – Until we get around the idea that someone can be on a lot of prescription medications that alter their mood or inhibition, but still be willing and able to consent to sex, we’re adding to the idea that disabled people aren’t sexual. And that adds to the infantilisation and othering of disabled people, and the isolation of their partners, and the dismissal of their relationships as somehow “not quite normal”. And that’s really, really damaging.

If you’ll exuse me, I’ll be in my bunk.

Less tangent, more suet.

So the last few weeks have been stressful. Starts with the psycho costume furore, goes on the the Samaritans’ Radar, via a massive bout of self-harm, a long hard look at whether surviving that suicide attempt in September was a good thing (Jury is currently out), a massive wobble in which I’ve been hiding from my best friend, and reopening my complaint against RLMP with the health ombudsman, after that paramedic’s phone call got me a phone call from a doctor who said… Wait for it… “Phone back tomorrow morning and book an appointment, this doesn’t sound urgent”. My issue was “All of my muscles are in spasm, I’ve run out of diazepam, my mental health has gone through ‘fragile’ into ‘nonexistent’, I’ve not slept for more than three hours at a stretch since early October and not had a night without exhausting nightmares since the 15th, and my whole life is ruled by pain, exhaustion and trying to avoid really permanently damaging myself”.

So, at 5.30pm on the 30th, after I’d smashed a few glasses and opened a few veins, I walked off into the rain and registered at a new GP. Who gave me an appointment for yesterday, the 3rd. I waited less than a week. I asked for the appointment at about 6mp, and not only did they have appointments left, but they could also book me in for a follow-up in a month if it was going to be needed, and a new-patient-appointment with a nurse on the 11th.

At the appointment, I repeated the complaint above. And I got a pretty decent response. My new GP, Dr AC, seems a bit worried about addiction (“I’m worried about prescribing you diazepam, since it’s addictive” rather than “I’m worried about prescribing you diazepam, since it gets less effective over time etc”) and can’t tell the difference between non-prescription and herbal medicine (Diphenydramine isn’t herbal. Not herbal at all) but she’s noted my mental ill-health, respects that I don’t need anything right now, and has carried forward all of my old scripts. Plus, she looks a lot like my best friend from sixth form, and graduated from my old University (Where I also worked in the medical school!) and that gets my vote.

And now, apparently, I’m crawling back into insomnia again. Welcome to autumn.

Forced Roles

So, amusingly enough, the day after a 111 responder sent an ambulance to my house against my express wishes, Samaritans Radar was launched.

For those who’ve missed it, Samaritans Radar is an app for Twitter which sends the user alerts every time the people that they follow tweet certain keywords and phrases. Those keywords include words and phrases about depression, suicide, loneliness, pain, self-harm and associated things, which are often just normal bits of a mentally or physically ill person’s vocabulary. There’s a lot of good blog posts on this that’ve already been written, starting with Latentexistence’s, which also links to a lot of them. They cover the technology involved, possible abuses, and the possibility of falling foul of the DPA. So I’m not going to cover that.

I, and a lot of my friends, will talk about these things openly even (especially?) when we’re not in crisis, because doing so is both helpful to us as individuals, and can help others who are struggling. There’s nothing more reassuring than seeing someone saying, in a calm voice “This is how my depression affects me” and having what they say be similar to, or comparable to, your own. Knowing that everyone that follows me will get an alert every time I decide to talk about (for example) self harm and coping strategies, or how to differentiate between intrusive thoughts of suicide, and planning suicide, is just going to make me less likely to talk about mental illness in a “how to cope” sense, and to make me less likely to use twitter to talk to people when I am in crisis.

But wait! You say; Surely, Pidge, when you tweet that you’re in crisis, it’s because you want your friends to respond?

This post here seems like a bit of a tangent, but go and read it anyway. Come back once you’re done. I want to talk about shoelace-tiers.

If I tweet at 4am, and one of my friends is online, and can help me, they’ll respond, and we’ll talk. If I desperately want to talk to an individual friend – if it’s so dire that I need a response immediately, and just having shouted into the void won’t make it better – I’ll phone them. Or the local mental health services. Or, indeed, the Samaritans. A spontaneous response from a friend who’s awake, saying “Hey, want to talk?” is nice.

A friend who’s asleep getting an email, which sets off an alert on their phone and wakes them up, coming online specifically to offer spontaneous-seeming comfort, who doesn’t have to tell you that they’ve got an automatic system to detect your crises, and thus can just “spontaneously” be always there at the right time… No, that’s creepy.

It’s one thing to be the friend that’s always there for someone, or to have that friend who’s alway there for you. But having a friend who engineers to be always present for your worst moments, when they’re not always around for the good times, is disturbing.

It’s the first step, I’ve found, in what I’m going to describe as role-forcing, a more universal way of saying shoelace-tying.

Let me describe, exactly, why I use the word shoelace tying.

A few years ago, I was having an episode of serious back pain, and I needed to have someone else do my shoes for me. I didn’t see this as being particularly sinister – It was just doing the laces on my trainers – and I’d made clear that I was very thankful for the person doing the tying. The woman doing the tying was someone who I’d been interested in being in a relationship with, and who was interested in BDSM. I’d made clear that I was into physical sensations, but that power exchange scared me on a visceral level. I didn’t mind that she enjoyed it, but she’d have to seek it with people who weren’t me.

She tied my shoes, several times, and she turned it into a power exchange. Lots of big soppy eyes, exaggerated care, explicitly making it be about her submitting to me. I had no choice but to let her do it, because I needed my shoes tied, and I had nobody else to do it because I was fairly isolated at the time. She forced me into a role which I didn’t want to be in.

Not long after that, when I was housebound for the first time – A combination of mental and physical issues – and I was befriended by a young man who helped out a lot. I would genuinely have been stuck without his help, but somehow, he managed to always be there when I had problems. He brought me food, and cleaned the house top to bottom – And thus I always had to ask him where my things were within the house, and came to rely on him to feed me, and to be my confidante. And he did, admirably. Until all that I talked about were my old war stories, from before I was crippled, and my worries for the future and the likelihood of my death by my own hand. And that’s what he pushed me towards, because it was dramatic, and it was how the narrative would have gone if it was all in his favour. Shoelace tier, forcing the role of “Broken superhuman” (Literally, his words!) from which the only logical conclusion was early death. It was only later on, after he’d moved away, and I’d grown enough sense of my own self to tell him to fuck off for good, that I noticed that all of his friends were amazing superhuman legends who’d just happened to have a terrible accident or tragedy in their past which made them soft and malleable and dependent on him.

Role forcing. The long term moulding of someone into a social role, usually along with isolation, or at least enough isolation that the disabled person continues to reinforce the role when they’re talking to other people (Example – The shoelace-tier responds well when the victim is passive and tactile. The victim is passive and tactile with others. Others assume that this is how the victim socialises with others, and treat them as such) Usually, it’s infantilisation – The disabled adult, treated as a child by either their own parents or a friend. Sometimes, it’s forcing a master role onto them (The shoelace-tier wants to serve, and thus treats the victim like a lord, making them into an isolated pharoah with no will of their own). Sometimes, it’s a patient, and sometimes it’s even that of an abuser – The shoelace-tier makes it appear that their victim is overly demanding of them, and gains sympathy from others for “Being the only one who can stand to be around [victim]” tus isolating the victim ever further. It’s not good, and it’s something that happens more often than anyone wants to admit – As a victim of it in the past, I don’t want to say “I’ve been manipulated like this”, and I can’t imagine that any abuser would ever say “I deliberately isolated someone and moulded their personality into what I wanted it to be”.

To other victims, I just want to say – It doesn’t make you weak, it just means that you’ve been in the wrong place at the wrong time.

Anyway, what does this have to do with Samaritans Radar?

Frankly, that’s how it starts. That one friend who’s always there when you need them? The one that does all your errands, that takes you to everything that you want to go to? The one who you automatically ring when things have gone wrong – But who isn’t the one that you think of when things are going right; Where they not only never celebrate your successes (Unless it’s a success like “I’ve got my surgery date!” or “I’m no longer under the care of the CMHT!”) but are never around for just pleasant chats by the fireside or quiet evenings down the pub. Or any quiet fireside chat with them turns into a tear-streaked baring of the soul. The one who feeds on your grief. Imagine if they had social license to do that openly? To follow your lows with an obsessive closeness that they don’t apply to your highs? To “just happen” to turn up at your house the morning after a messy night, and offer a shoulder to cry on and an alternative to going out and seeing your other friends… Those friends who just don’t understand like they do?

I don’t believe that these people are so rare that Samaritans Radar doesn’t have to be worried about them. I don’t believe that anyone dealing with a lot of mentally ill people could be naive as to their existence.