As of yesterday night, I’m starting to make videos of how to sort out various EDS-related things. The channel is here: MxPerspicacity’s Youtube Channel (There’s obviously also random other things on there, because it’s just my youtube channel). So far there’s a glenohumeral and a generic elbow reshuffle.

I intend to add audio descriptions and transcripts below the videos when I’ve got the hand strength, but anyone else who wants to can do it in the comments, obviously. Any ideas on accessibility, or corrections, will be applied either to the existing video or to a new one (I’m going to do one on the Matsen traction for shoulders the next time I have a dislocation that suits it, for example).

A Day In The Life: Midsummer Fire

00.00 – Happy Midsummer! Time for another Day In The Life

00.04 – Right shoulder is extremely stiff and sore, decide to have a shower to ease it off.

00.22 – Exit shower with subluxed hip. Stretch back into place by pacing, then sit down in bed. Refrain from morphine, trust in falling asleep soon.

00.23 – Back pain spreads across hips and up spine. Lie down, attempt to sleep.

02.30 – Still awake, back pain horrendous, take morphine, try to sleep again.

04.46 – Wake up, right shoulder subluxated. Set it, turn over, sublux left clavicle and AC.

05.30 – Back pain still increasing, manage to fall asleep.

09.00 – Wake up, both shoulders subluxed, reset both and sit up.

09.46 – Whilst sitting at computer, full dislocation of left shoulder. Back pain enough to merit morphine on its own.

09.52 – Right shoulder joins in with left shoulder, refuses to reduce. Right wrist spontaneously reduces, was apparently subluxed all along.

10.15 – Right shoulder goes into spasm, taking ribs with it. Take diazepam to stop it.

10.42 – Phone call to plan going out today with best friend. Feel a bit ill, but want to be up for it.

10.56 – Is this the start of a migraine? My ear is hot and half of my headfeels like it’s full of blood and wasps.

11.59 – Yes. Right hip, back, right shoulder also in intense pain. One eye streaming. Nosebleed.

13.13 – Sudden spasm across both sides of back cause me to fall face-first into Dearest’s crotch, mid-conversation. Blacked out, awoke to find him playing Minecraft and using my head as a table.

13.30 – Left hip sublux drops me to the floor whilst wandering through the kitchen. Screaming.

15.13 – Right wrist sublux. Popped back into place under its own strength.

15.48 – Fall over whilst going up stairs, due to migraine. Every time I stand up, I get dizzy. Sit down and stay sat.

18.00 – Realise that right hip paradoxically both hurts and is numb. Feels neuropathic. Pain and numbness spreads to knee and over arse.

18.21 – Right wrist starts to cascade, repeated subluxes in various joints every couple of minutes.

18.35 – Right shoulder starts to burn.

19.40 – Cascade stops.

21.43 – Right shoulder finally dislocates. Relocated with the other arm. Back pain gets worse, and merges up with hip/arse pain.

21.46 – Migraine continues, now feeling very dazed and sick.

22.50 – Migraine seems to be subsiding. Still feel very sick. Teeth hurt. Left eye feels heavy.

23.00 – Give up on the day, decide to go to bed.

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.

Nurse Karnstein has been doing this job for a very long time.

Today went really well.

Got up to the phlebotomy suite at LGI at about twenty to eleven, and was immediately in the chair since there was no queue. The first phlebotomist looked me over a few times, noted all the bruises, and picked out two or three veins that she thought might work. First, the deep vein on the left arm (“It’s so tiny, but it’s there!”) then the deep vein on the radial side of the right arm (Which was so deep that I didn’t even know it existed), and possibly one of the “So pretty!” surface veins. Phlebotomists always coo over the glowy blue veins in my arms and chest. They are literally so bright that I was once told off by a supply teacher at school for having scribbled on myself in blue highlighter (Never mind the already heinous sin of having rolled up my sleeves on a warm autumn afternoon), and are completely useless for blood draw, since they’re collapsy and soft. She even had a look at the collapsed veins down the centre of my right elbow, which just have no blood in them at all and are thus dark purple, more for her own edification than for any chance of getting blood from them.

So she called in her superior, without even touching a needle to me, and had a good old complain about whatever cackhanded twat had tried to use 21g needles, when a 23 would be more than big enough. She also got a look of horror when I said that the last time I’d been to the LGI to get blood taken, I’d ended up with needles in my femoral artery. She reassured me that “Only the doctors are allowed to go that far off-piste, we’ll just try the arms then give up”.

Her superior arrived, and the blood draw took about three seconds. She picked one of the surface veins in my right elbow, then gently threaded the needle in, narrating “Just under the skin, you’ll probably only feel a single pop, rather than two…” as she went, and then the blood flowed out neatly in one long tap, filling all three vials. She got the needle back out, taped a piece of cotton wool over the puncture, and was done. No fuss, no faffing, no half-arsing about with the wrong kind of needle.

I was free to go, with the results being sent back to my GP.

I may as well mention now that I really like the phlebotomy suite – It’s in one of the older parts of the hospital, built in 1940, and it looks the part. It’s like a set from Carry On Phlebotomy, with tiny wards and sash windows and endlass narrow corridors. It’s also, apparently, due to be sold off, which makes me incredibly sad, along with the original LGI building (1863) and chunks of SC (1904, former contagious disease centre, Where the pain clinic is). I’m not surprised, since getting the old buildings up to modern standards would cost a fortune, and the part of me that cares about accessibility and ease of maintaining hygiene really likes wide corridors, short transfer pathways and double-glazing. I’m just a little wistful, since the hospital is kind of my second home, and a little worried, since moving services from buildings in the city centre, to either share facilities with other services or to take them out to a cheaper plot that’s further away from the transport hub could cause its own problems. I may start taking photographs of the buildings and wards as I go, to have a record of what healthcare actually looks like right now, as well as what the experience is like.

Though living in a flat in the top of that gorgeous Art-Deco inner ear suite would be bliss.

Nurse Karnstein Will See You Now

Two more failed attempts at getting blood (By a different nurse), who then called in Dr AC to have a look, who marvelled at my lack of useful veins and that even in hot weather and an an armoured leather jacket my hands were blue and cold, checked over both arms, vetoed taking blod from my ankle, and gave me a bag of vials and notes to take to the phlebotomist at the LGI later this week.

They’ve also added to my notes that getting blood out of me is basically impossible, and not a task for the fainthearted or inexperienced, though that I’m thankfully not squeamish and most doctors will get bored of playing pin-the-vein-on-the-zebra before I do.

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.