Nothing to say

Honestly, today has been a bit shit. This week, even, has been a bit shit.

So, a couple of days ago I self-harmed a lot, which will probably leave scars. I miscalculated exactly how long my fastskin was, so today it was incredibly obvious that I’d done so when I went swimming.

I’ve only once before swam with really fresh self-harm, and I got called a “bad influence”, with the added explanation of “Because up until now [I’d] always been a good example because [I] came swimming, rain or shine, on crutches and obviously trying despite being handicapped”.

In retrospect, I should have tried on my skin before going to the baths, just to make sure I was all covered up, but I wanted to get out and swim and prove that I wasn’t just a lazy waste of time. I was also having fairly unpleasant hallucinations – Mostly of my younger self, following me around and making unhelpful comments about where to go mining for arteries.

I’ve also had a two-day migraine, which doesn’t help.

I got to the pool, got changed, and managed 400m, swimming not just slowly but with terrible coordination, limbs everywhere, lungfuls of water and splashing like a novice. I actually got out out of shame, rather than exhaustion.

Holiday in a couple of weeks, and I really hope I’m feeling like myself again by then. For now, I’m just going to try to ignore how much everything hurts and how much I feel like my life is awful, and get on with things.

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Personal, personal.

So, Friday was my other meeting with Dr L. First off was really simple – Yes, she’s willing to do the referral, they just need to take bloods for a variety of hormone levels and things like that. She took a quick mental health history (Mine, and close family), re-checked my relationships with my friends and my family, and asked if I’d ever self-harmed; Not asking to see the results, just asking if I had. I, of course, told her, listed methods, and she didn’t judge me at all – She seemed unsurprised, actually. Best possible response. She also did an assessment of “Sexual characteristics” which I assumed would have been something scientific, but was actually “Breasts are present… One piercing… Armpit hair…” So it felt more like a check of “Are you conforming to gender stereotypes?” than “This is a proxy for your existing hormone levels”. If she was actually looking for something like an intersex condition or PCOS, I’d have assumed she’d want to see things like hair growth on stomach, or unusual presentation of genitalia. So I have no idea what that was all about, but she was pleasant and professional and laughed when I said that there had been two piercings, but the cat took objection to the other one. So no fault there.

I then went to get bloods taken, and was lucky in that the nurse on-duty had a slot free immediately, so straight into the room we went, with two tiny butterfly needles. She’d asked “Good vains or bad veins?” and my response was “Crappy veins. Rolly, collapsy, deep and narrow. Paeiatric needles if possible.”

She’d been pleasant about that, seeing what the smallest needles she had were (21g) and being reasonably inquisitive about why I had awful veins. I was happy to chat about EDS-HM, let her stretch up the skin on my right forearm, offered to let her try bending my fingers back to see what a “boggy” joint felt like, but she declined since she was “Risk averse and didn’t like hurting people”. All so far, so normal, in fact fairly positive.

She listened to me when I told her where the good vein was, and I’d taken off my overshirt (leaving me in a vest) so as not to risk getting blood on my cuffs – Regular readers will know that the “one good vein” is a massive sanguine superhighway on the back of my right hand, which bulges clear of the line of the skin on either side of the anatomical snuffbox when I flex. It’s a beautiful thing to behold, a testament to the combination of good muscle development in my forearms, and to the terrifying paper-thinness of my skin. She punctured near it, managed to miss the vein (even though I could feel the tip of the needle brushing against the side of the vessel, and I was happy to tell her to just pull back by half a millimetre and have a second go) then withdrew, leaving it bleeding and with a bruise rising up. She put a cotton swab over it, held my hand to the desk with her thumb to put pressure on it, and waited for the immediate bleeding to stop to try again.

And then things got awful.

Now, you probably all know that I have extensive self-harm scars. They’re all on my left arm (Not the arm she was meant to be looking at), they’re all fairly obviously healed and they obviously (to anyone who knows what wound healing looks like) range from about six months to decades old. I don’t habitually cover them up, firstly since I dislike wearing long sleeves and I don’t think that I should have to hide any part of my body to make someone else more comfortable, and also because I think it’s probably helpful to youngsters who self-harm to see an older gent who basically has his life all in order, and has obviously also done so. I distinctly remember being a young teenager and despairing of the idea that, by self-harming, I’d be stuck forever in teenagehood, somehow. That I’d always be “emotionally immature” and that I’d be hated and thought of as disgusting or pitiable whenever someone saw my arms. I’m not exactly inviting a conversation, but I’m setting a little radio beacon on the numbers-station of non-verbal-communication, that people can have their histories and that their histories aren’t all they are.

But the nurse breached all possible bounds of good taste. Whilst we were talking about something completely unrelated, with her holding my right hand pretty firmly to the desk, she reached out with her free hand and touched my scars. No asking permission. No “Are they a sensitive subject, or can I ask you about them?” Just straight-off-the-bat touching them. And not a brief poke with a finger to indicate what she was talking about, as she asked “What made you do that?”, no, she actually traced them with her finger. Following the longest lines, exploring the texture on the crosshatching. I was so shocked that I froze, which effectively stopped me from pulling my arm away quickly enough.

By the time I unfroze, probably only a few seconds but it felt like forever, I responded with “Because my life is horrible.” and then quickly tried to divert. I could see that she wasn’t going to stop looking at them, or stop asking about them (Just fill in the silences here with inane and incredibly personal remarks like “Don’t you already have enough pain and problems?” and “I can never understand why people would do that” and “That looks like it must have been so painful”) I diverted onto the mechanical nature of them – Indicating the difference between an atrophic and hypertrophic scar, which ones were hyperpigmented, how the difference between a full-thickness lesion and a partial-thickness lesion affected wound healing basically doing the same lecture on immune function and cell growth that I would have given to a nursing student, but with specific reference to the unusual qualities of EDS-HM skin, and with my arm as Exhibit A, instead of a collection of slides.

It was the best I could do, she wouldn’t stop looking at my arm, and she had my other hand pinned to a table so I couldn’t put my overshirt back on.

Eventually, a whole fucking lifetime later, she tried a second venipuncture, but by now I was so tense and nervous that what should have been an easy stick was impossible. Another hole, another bruise. Come back on Monday, get someone else to try.

I left, feeling utterly fucking violated, and despairing of the training of some nurses. How much special knowlege does it take to not ask someone about something that is so obviously personal? I’d never even dream of asking someone how they got a road rash, even though I know that the answer would probably be “Came off my bike, skidded a bit, was fine”, because there’s always the horrible chance that they were riding pillion and the driver wasn’t so lucky. Fuck, I’d never dream of asking someone how they got so much as a papercut. So how did she think it was all right to ask someone, who was already in a very vulnerable situation, in such graphic detail about something which was an obvious symptom of mental illness – Especially when the person doing the asking was pretty obviously not about to sit around for a three-hour unburdening of the soul about the mental and physical pains which might cause someone to self harm (see: apply topical irritant) for relief.

Unsure whether to write an anonymous note saying “Hey, so, your nurse did this, and it was a bit out of line, and she didn’t mean to be intrusive but it made me really uncomfortable, could you ask her to not do it again to anyone else?” or whether that would trace straight back to me and make me the pariah of the practice.

Also, this is at least part of the reason that I’ve been fighting the urge to self-harm so badly for the last couple of days – If people are going to make free with the healed stuff, maybe actual blood-on-skin might make them think twice about touching, or asking, or generally bothering. I know that it won’t help, but that’s how my brain went about it. It’s been a long couple of weeks.

For the record, I’ve not self harmed.

As expected.

Today, I’ve gone completely mental.

Well, it started yesterday.

I’m hearing a fairly loud and persistent voice at the moment (Yes, literally) that’s telling me to hurt myself – specifically, to carve up my bad hip with a scalpel in order to get hurried along the surgery queue. I know this isn’t how it works, but it’s still a loud, distressing, annoying voice.

The other one is the very common one, saying “Hurt yourself, it’s better pain relief than morphine, and the side effects don’t last as long”. This is also difficult to ignore.

The third one is that I’ve had a shower, and the voice is saying “Psch, who do you think you are? putting on airs and graces, having a shower, as if anyone cares, you could wash all you like and still smell foul and not be suited to the company of other people. Fuck airs and graces, you’re not doing anything that bourgeoisie, my friend.”

But replace “airs and graces” with “trousers”.

I am literally sitting here in a towel because I believe that my own trousers are too good for me, and that putting them on would be unbearably acting above my station.

I’ve also self harmed, because some things aren’t completely ignorable. Hopefully, that’ll catalyse me into putting on a shirt and covering it up. I’d been wearing the same pyjamas for several days (sleeping and waking) and that’s not a good look, even for me. I smell completely hateful, even now, immediately post-shower.

Best Friend has offered to come over and keep me company later. Right now, this isn’t good though.

Fold

WIN_20150309_113306

3″ square, giraffe (brontosaurus?) from a fish base. Sadly only has three legs, but we cope.

Fold fish base, fold in half down centre, squash fold the small triangular flaps, then valley fold them in from opposite ends (one side of each as if you were making a crane, one side of each as if you were making a waterbomb) to make front legs. Fold up one side of the fish base as if making a crane neck (including the narrowing) then inverse squash fold the end of the other, to make the back legs.

Giraffeosaurus.

Now not so much like a fire alarm, more like a pneumatic drill right next to my head. Not self harming is actually physically painful right now – My hands are aching in a way that I know is completely psychosomatic. I might try to get into town and pay in last week’s payslip, which will at least stop me from staring at the walls. When I was fitter, on days like this I’d walk to the 24-hour supermarket and then just pootle around it for hours, not buying anything and just looking at the stuff and the people. It was warm, indoors, brightly coloured, had a toilet, and was full of people who would probably notice if I suddenly tried to top myself. Sadly, due to being physically wrecked, I no longer have that ability.

And now it’s pissing it down outside, so no chance of me going to town either. Maybe some cleaning will help.

Inside the skull

Caution: Talks about suicide.

I think I need to explain this one. I’m chronically suicidal. There’s a couple of different sensations;

Type 1 -The “lentils, turmeric, lemon juice, kill myself, chick peas, coriander” feeling. Like as if killing myself is just another option on the things I plan on doing during the day. Usually able to ignore it, or at least transmute it into self harm or complete inactivity.

Type 2 -The champagne glass feeling; It feels like walking down a flight of steep stairs, in a hobble skirt, carrying a tray of champagne glasses. It’s not that I want to fall over and smash all the glasses, it’s that I can’t stop thinking about falling over and smashing all the glasses because it feels likely. It’s not that I want to kill myself, it’s that I can’t stop thinking about it because it feels likely.

Type 3 -The actively wanting to die feeling; Whatever precipitates it, the feeling of just wanting to die. Usually just wanting to not exist, really.

Type 4 – The time to go feeling; The feeling of being in so much pain, whether physical or mental, that I should probably kill myself.

Planning is kind of irrelevant – I’ve got methods. As I had to explain to the NHS Direct handler once, if you ask someone whose house is full of toxicology manuals and anatomy textbooks how they’d kill themself, regardless of whether they want to or not, they’d be able to give you a plausible method basically off the top of their head. The other part of planning, I suppose, is the having my affairs in order – Again, since I’ve always been suicidal, I’ve always had my affairs in order. Documents for the mortgage, bank details, relevant passwords and advance directives, all in a folder in the bureau.

I suppose I’m typical in that the thing that’s stopping me is firstly that I refuse to give any of my friends the issue of finding me, and secondly that I have a phenomenal safety net. Dearest, Sister and Best Friend know that the second I say “Having the problem” they go into crisis mode and take shifts to make sure I’m always supervised (Whether that be online, in-person, or over the phone). I know to go and sit in a public place if I can’t be accompanied, both because I can then eat and drink without needing to make it myself, and because I won’t be able to do anything drastic.

This only really applies to Three and Four, of the major issues. The first two are constant, and just something I have to get on wtih.

Today is the fairly common combination of 1 and 2, with a hint of 4.

I am definitely not going to do anything about it. I am going to make a pilaf, then probably think about buying some bedding.

Normal people.

I eventually decided that I would go to the support group meeting today, and that I’d make a bit of a day of it – Go in early, pick up some beads for making a necklace with, sit in a coffee shop with a book for a while, then go to the meeting.

This, bien sur, went badly.

I started the day feeling a bit depressed and antisocial, as I often do – I woke up in pain (Hips screwed up, back aching and weak, head pounding) and after taking a bit of morphine and having a nice hot shower I didn’t feel much better; Mostly deeply apprehensive about the absolute clusterfuck that always seems to happen when I try to leave the house on my own. I wanted to do nothing more than keep taking morphine until I was completely docile, then spend the rest of the day listening to Robin Trower and feeling utterly sorry for myself. Dearest was out at work, but finishing some time during the afternoon, and could pick me up if I wanted or needed to come home early, so I decided that the most sensible plan of action was still to go out as planned, with the option of getting a lift home from Dearest if needed.

So I went out. I got on the bus, took my time crossing town to go to the bead shop, then went and sat in the coffee shop next to the university with a big carton of iced coffee and a book. I then realised that sitting on a coffee shop on a fine spring morning, people-watching and reading a novel was something that I used to do fairly regularly. And right now, it was the highlight of my year. Lo, the burst of self-loathing and fear set in, and I panicked. There was no way I could go to the support group, I was a boring, pointless human being that should just hurry up and starve to death.

I finished my coffee, sent a text to Dearest saying “Yeah, fuck this, text when you’re finished work and I’ll meet you at the car” and then started walking up towards the group anyway, planning to show my face for a few minutes, then leave as soon as Dearest texted me, which would be in about half an hour.

So off I went up to the rooms where we’d be meeting, a converted church and its surrounding buildings. There was actually a wedding party, presumably from the town hall, in front of it, having pictures done with a gorgeous old Routemaster bus that’d been repainted into black and white. By the time I got to the front door I was shaky and hurting all over, and there was someone outside pointing people around.

“Are you here for NA? Narcotics Anonymous?” he asked. I replied that I wasn’t, that I was there for the Ehlers-Danlos Syndrome meeting, which he denied all knowledge of.

“Please” I asked “Can I sit down inside anyway? I think I’m about to faint, and I’m quite scared”

Now, by this point I was obviously grey and having muscle spasms, and in a lot of pain. I had my stick on me, I’d just asked the way to a disability support group meeting, and I am not ashamed to say I was actually beginning to cry purely from physical exertion.

“Definitely not here for NA?” He asked “Just I have to lock this door.”

“No,” I said again “But please, can I come in and sit down and have a glass of water? I’m going to pass out, and I’m in a lot of pain.”

He slammed the door in my face. A couple of seconds later, I blacked out.

Whilst lying on the floor semi-conscious, I heard three voices; first a man’s- “Oh look, another one down on the ground”, then two women talking together, one saying “If I ever get as pissed as her, God, kill me.” and then a tiny toddler voice of “Mummy, why is that man lying down?” which got no reply that I could hear. I faded in and out of consciousness for a bit, and then finally came to enough to drag myself upright and get into my bag to get out some salt, morphine, and pickled ginger. For whatever reason, eating something when I’m in pain is always restorative, and the salt was to mediate the blood pressure drop that’d caused me to faint.

I sat up, then stood up. The wedding party was still going on. There were at least forty people within sight who’d seen me faint and struggle back to my feet. This time, I decided to try the second door, down a small side-passage and in the more modern building. I was greeted by someone who I later found out was the centre manager (And who’d parked her car in the disabled bay, with a jaunty “I’ll move it if anyone needs it!” which I pointed out was “The rallying cry of the complete arsehole”, which at least raised a laugh).

I explained to her what had just happened – that someone else in the centre’s staff had just slammed the door in my face and locked me out, leaving me to pass out in the middle of the car park, and she apologised profusely.

“Oh, well you know, they’re just so used to dealing with the addicts and complex cases and service users, they get a bit like that.”

I raised an eyebrow. “Well, I do look more like an addict than a cripple” I said. She looked abashed.

“No, no, of course you don’t. They just have to spend so much time talking to junkies and schizos – who just need to be told “NO” – that they forget how to talk to normal people.” Of course, if a ‘junkie’ or a ‘schizo’ is about to faint from pain and exhaustion, you should just slam the fucking door in their face, apparently.

Thankfully, with the bits of tarmac in my face and my skin flushed already with morphine, I don’t think it was obvious that I was increasingly, depressingly angry. I nearly turned around and left again, but instead I quickly ducked into a toilet and cleaned myself up and calmed down.

I got into the meeting room and was greeted with open arms by the coordinator, LSB, whom I’d met before, and she sat me down next to the woman she’d just been talking to and introduced us. We got to chatting (The official theme being “Coping day-to-day”) and it was really nice – We swapped stories, the frustrating bits, the good ideas, the things we both wondered about (Did you know that the NHS now offers Silver Ring Splints as well as Oval-8s? I didn’t know. No use to me, but use to someone. they also do a thing called Personal Budget, which allows you to pick more of your own orthotics and stuff) and generally had a nice chat. After half an hour, LSB got us to move around again and talk to some other people – this time a small group; A woman in a wheelchair, and her husband, and a mother and daughter who were 2/3 affected in their family (the two bairns being 11 and 4, and both bendies). All with similar stories, all sharing and generally having a bit of relief in being around people who really got it. There was a bit of a gasp from all involved when we played “Guess each other’s ages” and I turned out to be 28 (the median guess had been about 17) and it really is true that bendies tend to look young for their age. The girl seemed actually really pleased to see that we were all around and happy and socialising normally – I imagine that it must be terrifying to be that age and not sure what adulthood is going to look like.

I got the text from Dearest, and I said “Oh, go on ahead, my day’s improved”.

I spoke too fucking soon.

Then, an invited speaker stood up to take the floor – A doctor, and the husband of one of the attendee zebras.

He was everything that is wrong with medicine, with people trying to lecture without knowing how, and with people being unwilling to admit when they have no idea what they’re talking about. He was patronising, incoherent, offensive, incorrect, and too fond of his own voice. he also name-dropped having met Prof. Graham and Prof. Bird in a way that people who are genuinely confident in their research wouldn’t. He also called us all “Lovely ladies” and “Nice girls” a lot, and said that women were “Crazy for one week a month anyway”, which is not a good way to get people onside. Later on, he was really touchy-feely (as in, grabbed and hugged from behind) someone whom he’d just met that day, and who pretty obviously didn’t want to be touched by him, and who kept trying to pull her (heavily braced) hand back from his. My hackles were pretty instantly up.

Firstly, he claimed that we were all ignorant and that we didn’t know what EDS was. Then he tried to explain genetics;

“A woman’s chromosome is longer than a man’s chromosome. And the bit that makes EDS is on the long bit, that the man doesn’t have, so it’s very rare that it affects men.”

My hand went up;

“So are you saying it’s a single gene, and sex-linked? Have we found a single gene for EDS-HM? I thought that nobody was sure what the mutation was that caused it. I know we’ve found one for EDS-4, but isn’t that why there’s no genetic test for hypermobility, and that’s why we get a diagnosis of exclusion?”

He just sort of looked at me blankly, then said “It does have something to do with gender. It can skip a generation, or lots of generations. DNA doesn’t forget. You see, it’s autosomal, and that means that even if neither of your parents have it, you can have it. You never see a blue-eyed Chinese person.”

I tried asking my question again, using various different formulations of words but all trying to ask the same thing; Why did he think that EDS was sex-linked, but didn’t have the same mechanism as any other sex-linked disease (Where, generally speaking liestochildren, males are more likely to be affected than females, due to only inheriting one X-chromosome and thus not having duplicates of those genes – meaning that any recessive gene would be expressed.) Of course, if it was a single dominant gene on the X-chromosome, males would be unable to inherit it from their fathers, but still have a 50% chance of inheriting it from their mothers. This is all irrespective of the fact that, at least according to basically every paper published, EDS is caused by a variety of mutations on a variety of genes, differing depending on the type (Classic, HM, Vasc, Kypho, etc), whether it’s a spontaneous or an inherited mutation, and a bundle of other factors.

I got no answers. This would have been really, really useful, if he’d had something useful to say.

He then started claiming that GPs weren’t doctors. Now, I know that they don’t, usually, have PhDs, but he wasn’t interested in clarifying that, he was only interested in saying over anddd over again that they weren’t doctors, and that someone would have to teach them about EDS. And then telling us that we couldn’t teach them about EDS since we didn’t know what EDS was because we were ignorant (And, well, in a roomful of 23 EDS patients and their friends, you can’t make that generalisation – We are usually a fairly motivated and educated set of patients, since we have to be in order to get a diagnosis).

He then tried to explain what EDS was, and “that it all started when you were in your mummy’s tummy” and that it was something like a roulette wheel, where the reds were the tissues and the black were the bones, and the white bit was EDS. It all got a bit confused, very quickly.

He then said that the only way to “prove” EDS to a doctor was just to be sure in your convictions. He pooh-poohed the idea that most of us had, which was that the best way to prove it was to show them a fresh dislocation, or a hyperextension. By the way, this doctor didn’t have and form of EDS, though he had had polio, and since that had also been called a “malingerer’s disease” that made him an expert. But what authority he actually had to contradict a roomful of people telling him their own findings, and to tell them to stop doing the thing that works when talking to doctors and to start doing the thing that we used to do that would get us told to go away and stop being hypochondriacs… Yeah, no.

He then asked what the first presentation of EDS was; Considering that this was a room basically full of hypermobile people, the answers were “pain” “bendy” “fatigue” “clumsiness”, with a couple of brave “gastropareisis” and “constipation” thrown in. He again contradicted everyone, and said “It’s skin. It’s always the skin, because it’s connective tissue and it’s the biggest organ in the body.” – Of course, a lot, maybe most, of hypermobile EDS people don’t have much skin presentation at all. And earlier on he’d been trying to say that it was something like spinning a roulette wheel as to which symptoms you’d display and which you wouldn’t.

He then reassured us that we “Weren’t like those psychiatric patients with something wrong in their heads.” and that we “Weren’t like the crazy people, we were normal people”. At this point, he started staring at the oozing ten-inch-long cut on my forearm, which had had the scabs knocked off it as I fell earlier. I wasn’t about to put my coat back on (the room was boiling) so he gave the rest of his talk directly to my obviously self-harmed forearm, until I cracked under the weight of shame and left the room for the world’s longest toilet break.

When I came back, everyone was back to niceness and talking about arranging a fundraiser. That was more like it.

So, all in all a bit of a mixed day.

Pain upon pain

I’ve mentioned a couple of times that I sometimes self-harm, largely as instant pain relief (This is why I want to get some faster-acting painkillers, so that I don’t end up resorting to the scalpel), and yesterday’s complete shoulder-girdle pop (Acromiclavicular, sternoclavicular, glenohumeral, scapulothoracic… argh) was enough to induce an episode. Unfortunately, it was enough to induce an episode even after filling up on morphine. The result being a lot of very deep cuts that I didn’t really feel very much of, and needing to limp over to the pharmacy (On wrecked hips, making matters worse) with my cane in my off-hand (due to my left shoulder being in a million pieces, and my left forearm leaving a trail of blood almost all the way from my door to the shop) to get bandages and antiseptic.

Arriving at the pharmacy, though, I obviously couldn’t just get the bandages and leave, because I was bleeding all over their floor and obviously shaken up and with one hand almost completely grey and an immobile shoulder. I was sat down in the consulting room, wiped off with alcohol, asked politely if I was on any psychiatric medications, then allowed to bandage myself up and go home.

The irony being that by the time I’d wrapped up, the painkilling effect of the damage had worn off, and I was just as knackered and sore as I would have been otherwise – In addition to the pain of having to go out and buy all the sodding antiseptic.

Ah well, rheumatology tomorrow. In preparation for that, I rang Stanmore today to see if they had my referral, from either UCLH or from my GP, and they’ve not got me at all. So it’s honestly starting to look like all the London stuff was a waste of time and effort on my part, sine nothing has been done about it. And I still have to fight tomorrow to get imaging on my shoulders and hip. That’s the imaging that I was first told that I needed in July and November, respectively.

The wheels of bureaucracy do grind slow.