Posted in Uncategorized

Little Puppy

I dreamed that I was on a boat, but my quarters were exactly the same as the room in which I live now. For some reason I was entrusted with a tiny tiny puppy who could fit into my palm: about the same size as my (now much bigger) kitten Popoki was when I first got her. For some reason, I tied the puppy up under the bed and forgot about him for ages.

When I came back he was half starved. I had to wrench Popoki back from him to give him a chance to eat.  Then, Mr Linguist found out that he got a job in Sweden, and the sky turned purple.

This was really meant to be a blog detailing how I was dealing with DBS, which Rebecca Park told me to do back in November. It was meant to be about weight gain and eating disorders and feelings and research.

It’s turned out kind of random.

Possible Trigger

Continue reading “Little Puppy”

Posted in Uncategorized

Good News!

Visited Daisy in hospital this afternoon with Mr Mediator and Dr Feline. Daisy is doing a lot better. I haven’t seen her (except yesterday when I happened – completely incidentally – to be at the same time having a spinal X-ray, long story, turned out no fracture; anyway, she was completely fast asleep, so it hardly counts) but the stories from Mr Mediator haven’t been great, although it was also clear she was improving.

Miraculously so this afternoon! Apparently, she was so much better even than just this morning. Her speech was slurred but completely understandable, she can use both sides of her body (but can’t see things to the left of her), her swallowing seems to be coming back, and she walked (with a walker) right up to the end of her bay and back, and sat down on her own! So, good news all round. Hopefully she’ll be able to go ‘home’ (weird saying that about a residential place) next week, early. It’s just the eating part that isn’t coming back as fast. She’s on 8tsp pureed food 3 times a day. She says she’s hungry, and also said she’s bored particularly because she’s ‘waiting around for nothing to happen.’

God, do I know how that feels.

But it’s all good news.

*whispering again*

Continue reading “Good News!”

Posted in Uncategorized

Life List

I had a list of things I wanted to before I ‘grew up.’ For a long time, this was just a vague time in the future. Then it became by the time I was 18, then 20 because I decided no longer being a teen would mean being an adult. When my ED really got bad, I let myself have until 25.

Well, here I am. In an hour. I’ll share the list.

  • Publish a novel
  • Go to Oxford
  • Lose my virginity and explore sexuality
  • Read most of The Classics
  • Spend a year travelling and volunteering
  • Go to South America
  • Do a TEFL course
  • Be in a ‘proper’ relationship
  • Get stoned and try something longer
  • Have an article in a magazine
  • Volunteer for GreenPeace
  • Live on my own
  • Have an idea about my career
  • Run a half marathon (or at least a 10K)
  • Have an ‘adult’ relationship with my parents
  • Volunteer locally on a regular basis
  • Swim between St Martins and Tresco
  • Get Grade 8 in piano, viola, and violin
  • Go to a festival
  • Lead the orchestra
  • Become one of ‘the year thirteens’
  • Live in a more minimalistic fashion
  • Apologise properly to Sam

Now, I could into great detail on each of those subjects, but I can also sum the whole list up very easily.

Continue reading “Life List”

Posted in Uncategorized

Daisy, Daisy, Give us an Answer Do…

leucanthemum_vulgare_filigran_flower_2200pxYesterday, Daisy had a stroke. Luckily, she actually had a carer with her on hand (she was just setting down to have breakfast); we were going out to see her to play Scrabble, like we normally do, but then we got the phone call.

It’s a waiting game. She isn’t paralysed down her (left-hand) side. She’s very weak and sleepy, but that’s to be expected after a stroke. She can walk, but not stand. She can’t speak in any coherent way at the moment. And, more worryingly, they think she can’t swallow.

Of course, it’s early early days and no one really has any idea what kind of recovery she will make. That’s not my being blind and oblivious; it’s the truth. She had a big stroke about five years ago (I thought it was three, and I assumed this was a TIA, as on the phone they said ‘mini stroke.’ What else am I to assume?), and made a very good recovery. I mean, she was affected by it, but it wasn’t….BOOM, you’re a vegetable. Which is a disgusting way to talk about people anyway.

Mr Mediator spent a lot of yesterday with her after I got hold of him. He’s taken today off to do the same thing. His sister, Ann, was there as well for some of the afternoon, and I’m sure she’ll travel again. She’s more easily unsettle-able and rock-able than Mr Mediator. He has too many people to care for.

I can’t go, because I’d be a hindrance rather than a help.

Waiting on news, dbsgirl.

Posted in Uncategorized

F*cking Up

It would be two days before by birthday, but I’ve decided to boycott it this year. That’s in my own control – Christmas isn’t ‘mine’, so we could just squash bits out to make me more comfortable. Accommodate me. Isn’t everyone nice? And now that I’ve moved back in with my parents, no one make me do anything at all. Isn’t that wonderful?

I can do anything I want!

And I’ve chosen to f*ck up. When I spoke to Rebecca Park last Wednesday and heard that, basically, even when the scanner does get fixed (like, June), the trial can’t be taken forward because they have no funding to look after trial patients afterwards. To do all the checks and the adjusting of the chip, and the blind testing and everything: there’s no money. So, that means there’s no way of them telling if I (or anyone) can have it all, therefore it wouldn’t be fair to start the ethical trials either. So there’s nothing to be done. Nothing. It’s all gone, because of a machine or nothing.

Since hearing that, I’ve restarted restricting harder. Not that it’ll get me anywhere, but that wasn’t getting me anywhere either, was it?

After being weighed and discovering [TRIGGER] Continue reading “F*cking Up”

Posted in Uncategorized

DBS

DBS, apparently, means the Disclosure and Barring Service which is the new name of a CRB check – you need one where they thoroughly check your criminal records etc before you are allowed to work with vulnerable people, such as the elderly or children.

For me, DBS if something will different. It is Deep Brain Stimulation. Basically, they insert two electrodes in your brainbrain (under local), and then a wire is inserted down your neck to under your shoulder blade where a rechargeable battery is inserted (under general). It’s extensive surgery; it’s brain surgery.

So, you need to be BMI 13.

This is a higher BMI than I’ve been for a good few years – fucking terrifying for any with an eating disorder. I was at CHM EDU (I figure I shouldn’t name places exactly, that’s just initials, so it’s not as bad?). Anyway, that final admission was to see if I could make a real change. I’d been in hospital constantly for over four years at this (and on and off for three years before then) point and only had NG tubes or drinks (mostly drinks), and this was my last chance, in effect. I was being given a real chance to start eating food, and gain weight and comply and work with them.

This is a huge change to my other admissions. I was a nightmare, I’ll admit it. At one point I was being restrained by five men four times a day just to get a tube down my throat. Once, I made every patient in the dining room wait for three hours because I wouldn’t drink (that 509a90aba9a8b2d0f389d63852e21eadthere was their ‘tactic’ for making me comply). I’ve absconded more times than I can remember. I’ve ended up in general more times than I can remember. At one point I was ending up being blue-lighted about once a week from self-harm. I’ve overdosed more times than I want to admit.

So, this time was different, in some ways. I did cooperate. I didn’t overdose once. I self harmed only superficially. I sat down to every meal. I didn’t always complete, but it was better than usual. I wasn’t perfect. I still purged. I still had arguments with my consultant and dietician. But I tried. I actually ate food! For the first time (by then) in nearly five years, I ATE FOOD. REAL FOOD. BY CHOICE. Not like having syringes of ice cream mixed with peanut butter, or some other concoction, trying to be shoved into my mouth with those big syringes whilst under restraint. (And, yes, that did happen. And I can’t remember how many times.)

But, basically I didn’t do enough. My inspiration and the the reason I carried on was because I was offered a place on this DBS trial by Rebecca Park if I managed to make design-balance-scaleBMI 13. But I didn’t, by about 0.4. So, I sort of gave up. I stopped eating food again, except for porridge in the mornings (that was the easiest).

Thus, I was discharged. My God, it was last April. Look how bloody long I’ve lasted! Most amount of time I’ve been out of hospital in 8 years. Unfortunately, that doesn’t make me proud. I wish it didn’t.

 

Look, I’ve been telling you you about DBS and it’s turned into the history of my ED just about (there are lots of other bits obviously, particularly about the early days, how it started).

SO, DBS. The theory is that stimulating the nucleus accumbens, highlighted in the first diagram) can help patients with EDs. Or specifically people who have SEEDs (Sever and Enduring Eating Disorders). The nucleus accumbens is the reward centre of the brain; theory being that this can help people cope with a different lifestyle.group of people

It’s completely in trial stage: twenty people have undergone it in Canada with pretty positive outcomes, but twenty means nothing in scientific terms. There’ve been a few trials in the UK (maybe a few individuals). The woman running the trial is Rebecca Park, and we’ve been in contact. I made a contract with myself to reach that BLOODY BMI, and you know what? I did. What I’d failed to do in hospital for so many years, I managed living  with my parents. What does that mean? I’m not sure.

We were in contact yesterday. I’ve done my bloody bit, and it’s been been fucking awful, let me tell you. But, one of her colleagues 62501138-51a6-4552-aa53-a40308374e42is now off sick, and their scanner hasn’t even started to be fixed – I did know that it needed work, but that was months ago. And there’s no funding from the government. So, we’re talking about June when the scanner’s fixed, and god knows when with the funding.

I’m so angry. I DID MY BIT. I know it’s no one’s fault, but it’s just so unjust of the university. For the first time in my life, I was actually fighting my ED.

You know what? I can’t be bothered anymore. And I full well know – I’ve been told enough times by every sodding person I’ve seen since yesterday – that it’s throwing away what progress I have made. But this was it.

I told myself this was my last chance. I said something had to change before I was 25; it’s a significant year for me. You know what? I’m 25 in six days.

 

Fuck this.