kaberett: Overlaid Mars & Venus symbols, with Swiss Army knife tools at other positions around the central circle. (Default)
On Friday afternoon I attended an introductory information session being run by the hypermobility clinic. This was useful in several respects (the factoid that the average bendy person needs to be twice as strong as the average non-bendy person to compensate for joint laxity; the articulation that part of the problem is that bendy folk tend to do everything at much greater extension than non-bendy people, meaning we make isolated joints do all the work that non-bendies use entire systems to carry out; the introduction to the set of services other than individual physiotherapy that are available via the clinic), but it also managed to hit a lot of my buttons about how discussion of chronic pain gets framed in the NHS and in the medical world more generally.

Read more... )

Resources recommended during the session )
kaberett: A green origami stegosaurus (origami stegosaurus)
1. I have decided that I probably am sufficiently into the concept of Omnifocus (as mentioned some months ago by [personal profile] recessional) to want something Apple-ecosystem and portable to run it on. I also want it to not be new because I am absolutely vile to tech, sooooo do any of you (preferably of the semi-local variety) have old iDevices you're looking to sell? More toward the "small tablet" than the "smartphone" end ideally, I suspect.

2. In medical/internalised ableism news: Read more... )

3. To continue the assistive tech theme, I continue to amuse myself by referring to the SIMless smartphone I use for health-tracking and meds reminders and the like as my Auxiliary Internet Device. AID or AIDe, gettit.

4. Tiny crochet dinosaurs. Plush toys of children's drawings, by Ikea.

5. Food. Things I am vaguely intending to make over the course of the weekend, an aide memoir: sea-spicy aubergines (use the pepper, self) and egg fried rice. Lemon meringue pie, maybe. Bean chilli (pick up the sweet potatoes, & while you're at it repack your washbag). I am still stuck on what to do with the half-cabbage other than cabbage soup (suggestions welcome) but in the process of seeking inspiration I came across smitten kitchen's hazelnut brown butter cake and feel a BAKING coming on (not least because I have abruptly realised that rather than browning just the butter for the salted caramel I could brown all the butter ever when making brownies. Hmmmmmm.) [hello future self P wants you to try Norwegian porridge]
kaberett: A drawing of a black woman holding her right hand, minus a ring finger, in front of her face. "Oh, that. I cut it  off." (molly - cut it off)
So. Lo these many years ago, when I was young and carefree and taking many many fewer pills per day, I acquired a chunky seven-compartment dosette box not unlike this one.

Shit happened.

I replaced it with something more suited to my new world order (and in all seriousness I've now been using this style of box for a couple of years and I strongly recommend them).

I'm about to embark on a knitting project that uses seven types of bead (yes I know that lists six, there's also the pole star, which I'm doing as a distinct bead).

... guess what.
kaberett: A drawing of a black woman holding her right hand, minus a ring finger, in front of her face. "Oh, that. I cut it  off." (molly - cut it off)
(Turns out I have at least some friends who haven't heard this particular rant of mine before, and I can't face wading through tags to see if I've had it properly already, so! Here we are. Content notes for everything you'd expect in terms of abuse, medical neglect, medical incompetence, terminal illness, etc.)

Read more... )
kaberett: a dalek stands at the foot of a flight of stairs, thinking "fuck." (dalek)
Okay, there is Something wrong with my hips and I really don't understand what (and maybe it is my shoulders too idek). What is going on is: as of a couple of days ago my hips are really not liking me moving my legs forwards or backwards particularly. Stairs are awful. The bending required to get socks & shoes on or off is the worst. Sitting cross-legged isn't really possible. Transferring between sitting and standing is also pretty grim. It's taking vastly less time than usual for standing/walking to get me to actually-shaking-uncontrollably (starts in my knees, moves up to rest of motor control particularly hands if I push it) and needing to perform controlled falls.

FACTS:
  • I am hypermobile and my hips are Not Great in this respect.
  • I've been wearing flat shoes and walking a bit more than usual?
  • I haven't been doing anything terribly unusual in terms of Things To Sit On and in fact have not done any of the really vile stuff involving full days sat on wooden stools in lab.
  • Sex is not a plausible culprit on this occasion.
  • ???


Thoughts much appreciated because this is not fun and I don't know what is More Wrong and it is bothering me. I do not like yelping in pain when I try to reach my wheelchair bag or check a clock behind me or take off my damn shoes. It is extremely tedious.
kaberett: Overlaid Mars & Venus symbols, with Swiss Army knife tools at other positions around the central circle. (Default)
  • Group Christmas dinner last night. Head of Group checked with staff whether it was okay to smoke inside the building. My coughing & throat were noticeably worse when he was more actively smoking the e-cig than when he wasn't (even when I had my back to him so had no idea what he was doing other than lung reaction). On the other hand, he noticed me looking twitchy so I've managed to discuss it a little... and awkwardly it turns out that he was already smoking less in meetings with me than with all his other students. Augh.
  • Lots of being-scared-of-things at the moment. Need to sort out what fears are which. The scared-I'm-crazy (wrt the smoke exposure thing) vs the scared-of-accidentally-dating vs just being so tired again. (Actually, I just need to write that post about last week's Elementary, I think, to discuss this more; right, that's why I wasn't going to do that here.)
  • Housemate is home. <3
  • Lunch with my mum in the NHM was nice (she was there for work and it's right next door, so).
  • I am having so many feelings about Stray Italian Greyhound (god I just want to lay down/these colors make my eyes hurt/this feeling calls for everything that I am/not//I’m not that kind/I’m so good at shooting down any notion/this tired world could change) and also a bunch more about Least Complicated (I'm just a mirror of a mirror of myself)
  • Everything hurts pretty consistently at the moment, for reasons I am not at all clear on, and I am just. so. tired.
  • Okay, I will get up the national rail website to prompt myself to sort out tickets to York for later this month, and then I will listen to Never Look Away again, and then I will head down to lab and do a five-minute job and then I will come back up here and try to get caught up with paperwork and then I will do another fifteen minutes in lab. Ugh. Everything is slow and difficult, and executive function isn't; SAD, I think.
kaberett: Overlaid Mars & Venus symbols, with Swiss Army knife tools at other positions around the central circle. (Default)
There is a piece of art on display in the British Museum, part of the set-up for which is that the average person living in the UK will get prescribed 14,000 pills over the course of their approximately three-score-years-and-ten.

Currently, I am taking sixteen pills a day: 4 paracetamol; 3 NSAID of some description; 3 hyoscine butylbromide; 1 citalopram; 1 amitriptyline; 1 omeprazole; 1 loratadine; 1 B-vitamin; 1 C-vitamin. The vitamins aren't prescribed (but I'm demonstrably less mad when taking B supplements, and colds are much less debilitating when I'm taking prophylactic vitC); the paracetamol are; and sometimes I'm up at 8 paracetamol, and sometimes I take codeine, and sometimes I take diazepam or temazepam, and sometimes I'm on a citalopram dosage that requires me to take 2 tablets instead of one; so let's say that 15 is a nice round approximate number. This has pretty much been my regular meds regime since mid-2012.

That's 5475 pills a year. Approximately. Which gets me up to 14,000 in a little over two and a half years; or, to put it another way, since getting settled with this med regime in summer 2012 I've taken as many tablets as most people in the UK do in their entire lives.

Remove any of them - except, maybe, the vitC - and my function decreases measurably within days.

Damn right I have given up on getting better.

Read more... )
kaberett: Blue-and-red welly boots on muddy ground. (boots)
So y'all wanna convince me that I shouldn't discontinue my NSAIDs just because
  • I've already been to the GP three times this week and I am bored (by which I mean "super out of cope for managing medical professionals")
  • there's currently manufacturing/supply issues with both sizes of mefenamic acid
  • ~it's not that bad really~
... etc?

Like, I have arranged for my pharmacy to text me when they get some more supply in, but I just. It seriously feels like in the meantime least-hassle is (1) stroppily discontinue followed by (2) add ibuprofen in as and when I decide I really do need the continuous anti-inflammatory.

SO. BORED. OF. THIS.
kaberett: curled decorative end of curtain rail casts a heart-shaped shadow on a wall (heartfruit)
Write your dreams upon me.
Carve them bone-deep, filigree
and fretwork of my flesh:
I'll bear your weight. I'll bear
the wait. Here, hear
as my heart beats. For all that's wrong,
for all I cannot do, this,
at least, is steady, sure.
You're not the first. I am a beast
of burden. I am strong.
Beloved, if you'd only dare to ask
you'll find me more than able for this task.

fuck.

Jul. 18th, 2014 10:29 pm
kaberett: Sketch of a "colourless, hamsterish"  animal having a paddy. (anxiety creature)
I have spent the past two days housebound in an attempt to let my lungs recover. Because reasons I had to pop over the road just now.

I still can't leave the house without coughing fits bad enough to prevent me walking.

I hate being this ill. I hate it, I hate it, I hate it.
kaberett: a watercolour painting of an oak leaf floating on calm water (leaf-on-water)
Sickness is not another country.
It's an ocean, with checkpoints on the beaches
and border guards of stone and surf.
And oh, we vessels, we
put in, sometimes, to unanticipated harbour
surprised - delighted - by reprieve.
You, perhaps, may disembark, may embrace land--
but I'm cast off, compelled
to struggle through the storm and pray for calm.

-

Apr. 10th, 2014 05:31 pm
kaberett: A drawing of a black woman holding her right hand, minus a ring finger, in front of her face. "Oh, that. I cut it  off." (molly - cut it off)
I think the controlled fall I took from my chair at the dining table to the floor twenty minutes ago (& still no signs of wanting to get up) 1. validate my decision to not try leaving the house today and 2. particularly validate my call that spending at least half an hour standing up handling HF would be a Very Bad Plan.

Meanwhile, still no news from the dwp.
kaberett: a patch of sunlight on the carpet, shaped like a slightly wonky heart (light hearted)
[personal profile] naamah_darling's launched a new blog: "I want to show people what living with my mental illness is like. Visibility is a major factor in reducing the stigma that surrounds mental illness. For many people, though, it’s risky talking about these things, for having “crazy” be the first thing people know about you. People have to keep themselves safe, and many cannot speak out."

And, you know, there's all sorts of reasons I think it's very important to talk - and talk publicly - about mental illness. So: hi. I have chronic depression with anxiety; I've been depressed at least since I was thirteen. I strongly suspect I also have undiagnosed PTSD.

I started medication when I was 21, because I couldn't put it off any longer. I'd delayed seeking diagnosis for so long because of the stigma: both medically, in that it would have been even harder to get my chronic pain diagnosed if doctors could happily dismiss it as somatisation, and socially/academically. As it is, I took a year out of my undergraduate degree, and every time someone asks about it I have to decide between the bland and anodyne "for health reasons" and the braver - and more informative - "I went very, very mad".

Crazy is a thing I am. It's a thing I can't hide, even if I want to: ask me, maybe, about the times I've suddenly realised, walking through a supermarket or shopping centre, that I've been muttering out loud for several minutes. Or, well, ask me about the way it impacts on my work.

But: "crazy", being crazy, isn't the bad thing here, particularly: it's hard, some days or weeks or months, but I am medicated and I have people and I have a counsellor and mostly, for the time being, I'm alright.

The bad thing is the way people react to "crazy": the way that in trivialising it they trivialise me, or that in fearing it or despising it, it is me they fear or despise, or that in being visibly crazy in public I put myself in danger - and in more than one sense this is not something I can control.

Here's another thing: it feels very strange to say "I am depressed" when my medication and support network are currently keeping me functionally not-depressed [most of the time]. But: I have endometriosis even when I'm not in pain; I have endometriosis even when my painkillers, or my GnRH agonists, or whatever, are working. And I am aware - and sometimes it is painfully, desperately aware - that the only things between me and my illness are my daylight lamp and 30mg a day - forty in winter - of citalopram hydrobromide. Like [personal profile] jjhunter says: and 'history of depression' means there's no defense/perfect enough to keep it from coming back; like Onsind say: yeah it gets better / but it also could get worse / tainted blessing, stubborn curse / and all the same, you just take it day by day (by day by day).

And that? That is why I am going to keep on talking.

hah.

Sep. 4th, 2013 01:41 pm
kaberett: Blue-and-red welly boots on muddy ground. (boots)
I've been discharged from the pain clinic... because I was in too much pain to adapt to my planned route to the hospital not working.
kaberett: "(not evil)" above an ostrich. (evil ostrich)
(I am caught up with the introductions post so far; if you'd like to meet people I know, please feel encouraged to go browse comments & leave one of your own, if you haven't already. Absolutely no obligation to subscribe or grant access.)

Today I was supposed to: post a lot of things, have lunch, and go to a pain clinic education session.

I managed to: eat a fig and some berries for breakfast, get a bus at approximately a sensible time, post the things, have lunch with my mother, and... get on a bus. And ride it to the end of the line. Because there were roadworks, so it was rerouted away from the hospital, and I was in too much pain to realise that the sensible thing to do was get off the bus and get a taxi. So I missed my pain clinic appointment. Which is somewhat awkward and deeply embarrassing, but whereas at the time I was convinced it was because I Am Shit I have with the benefit of a little more hindsight and a lot more opiates recognised that no, in fact, it is merely that I am ill and was having a bad day. So that's going to be an interesting phone call to make tomorrow. (On the plus side, I have had near-constant stress-induced facial herpes outbreak for the past month, BUT I haven't had any Staggering Crazy this menstrual cycle, which is good.)

But then I got home and collapsed into bed and some hours later, when everyone was home, finally managed to ask people to get top-up painkillers + water + me all in the same place, following which I perked up rather, astonishingly enough. And I read some more of the current book (Labyrinths, Borges, in translation; it's Harry's copy, and it was rather unsettling to be sat in the sunshine in Fulbourn, where he spent a lot of time in the local mental hospital as an in-patient, reading a book with a hand-written dedication to him, and some wry pencilled comments in exactly the style I would make them), & I showered, & I played a game of Scrabble, & I wrote two e-mails about the Housing Situation, & I transferred all of WtNV to the mp3 player.

On balance successful, I think, primarily because I actually managed to realise (unprompted!) that missing my appointment wasn't a case of me being the worst person in the world, utterly incapable, &c. Well done me.
kaberett: Photo of a pile of old leather-bound books. (books)
There is a one-page introduction, and this is it:
Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.

I want to describe, not what it is really like to emigrate to the kingdom of the ill and live there, but the punitive or sentimental fantasies concocted about that situation: not real geography, but stereotypes of national character. My subject is not physical illness itself but the uses of illness as a figure or metaphor. My point is that illness is not a metaphor, and that the most truthful way of regarding illness--and the healthiest way of being ill--is one most purified of, most resistant to, metaphoric thinking. Yet it is hardly possible to take up one's residence in the kingdom of the ill unprejudiced by the lurid metaphors with which it has been landscaped. It is toward an elucidation of those metaphors, and a liberation from them, that I dedicate this enquiry.

I am feeling decidedly well-disposed towards the rest of it; I might not report back on overall impressions until my end-of-year books post, but I think there's enough value in these two paragraphs for them to be worth sharing before I get any further. (This is not to say I agree, necessarily; but thought-provoking? Yes.)

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kaberett: Overlaid Mars & Venus symbols, with Swiss Army knife tools at other positions around the central circle. (Default)
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