(More) thoughts about ED recovery

A couple of weeks ago, a friend recommended a documentary about anorexia by Louis Theroux and tonight I finally got round to watching it, which got me thinking a lot more about eating disorders in general and particularly about recovery and what it actually means.  I realised that apart from a few specific posts (21/05/07: probably the most significant day of my life.  Reflections a decade on‚Ķ, the diary entry posts I wrote around that time and ED stereotypes), I haven’t really written many posts directly about eating disorders although they’ve come into a lot of my other posts.  I’m not really sure why; I think it’s partly because I’ve had it so long that it kind of seems like a part of me instead of an actual ‘illness’ but also partly because I’m still not comfortable talking openly about it to many people and it makes me feel really guilty and uncomfortable.  It’s not exactly a secret- more the opposite really and most people who know me just accept it as part of who I am so it’s not really an outside issue a lot of the time especially since my weight’s high.  I think most people would be more shocked if I actually ate ‘real’ food or in front of them rather than it being a problem that I don’t!  But I can’t see that happening anytime soon (or ever) so I have no idea what would actually happen if I did.

The documentary was interesting but I found it hard to watch and cried through a lot of it (although to be honest, I’m crying at pretty much anything atm so that’s not necessarily a reflection on the programme).  The first (and v superficial) part was that it made me realise that I am SO FUCKING FAT which obviously I knew already since I see my body every day and I know what the scales say but seeing that amount of really thin people made it even more obvious and (horribly) I was really, really jealous.  Since I’ve been on medication (particularly antipsychotics), I’ve gained A LOT of weight and even more since I started running longer distances because ironically you train your body to store fat as fuel which combined with the medications means that I’m over my target weight and have been for years apart from a few months last year when I came off the medication and lost most of the weight again, which went straight back on when I restarted the meds.  HATE it so, so much and especially hate feeling selfish, greedy and disgusting all the time and that it shows in my body.  But I can run further and for longer without getting black in front of my eyes or passing out so there are some positives. And much as I hate the medication, it does help to keep my moods more stable so can’t really complain too much.

The other really weird bit of the documentary was that it was based in Phoenix Wing at St Ann’s in London which was where I was outpatient for a year when I lived in London. So that was a bit surreal and weird to watch!  I could relate to a lot of it which felt very weird because I haven’t been inpatient since 2007 but it didn’t seem like much had changed except that they were allowed to go into their ward rounds (we had to submit requests then wait for the outcome), they were allowed home leave before getting to target weight (one year, I wasn’t even allowed home on Christmas even though I’d been there for months by that point) and their supervision was half an hour after meals instead of an hour.  Apart from that, the structure and lack of freedom seemed pretty much the same although he said that the average admission was four months which seemed a bit short to me but maybe the programme was different?

The documentary was based alternately on four different women who had had eating disorders for various amounts of time.  One girl had only had it for a year and her story seemed the most positive- by the end, she said she was determined not to go back in and she seemed to see herself as ‘recovering’ although I’m still not sure what that actually means.  The story I identified with most was with a girl who was on her eighth admission because I could see how frustrated she was with the whole process and going round in circles.  Even though I haven’t been inpatient in 12 years, I’m still on and off under ED services and I genuinely don’t know what recovery actually is or how you get there.  One girl was under a section and the ED service weren’t even aiming for ‘full recovery’ with her although they still didn’t say what that actually is!

The last story was about a woman who’d had anorexia for 40 years and was still an outpatient, and I could relate to a lot of what she said too.  She cut through the psychological stuff and said that it was basically about not wanting to grow up, and there’s a lot of me that can relate to that too.  I’m not really into the deep psychological reasons or any of that, but I know my ED started the year after my periods did and a lot of it as a teenager was related to trying to stop my periods and especially the intense mood swings and obsessions that came with them.  I’ve never experienced sexual attraction but I’m not sure how much of that is related to not wanting to if that makes sense and actively trying to stop sexual development through losing weight and stopping periods- I’ve never had proper regular periods because I’ve always tried to stop them and now I take the combined pill every day without the ‘break’ so I don’t have them at all.  But then it’s more complicated because of autism which is a developmental delay and makes you feel younger than you are anyway and because of BPD which also makes you feel like a child and emotionally immature so I have no idea what comes from what.  The psychiatrist I saw at the ED service recently said that he thought my ED came from having BPD but the other psychiatrist I’m seeing at the community mental health team doesn’t agree so I have no bloody clue and to be honest, I don’t really care what comes from what, I just want rid of it all or at least to be able to manage better!

The thing I found really frustrating about the documentary is that it only focussed on ‘classic’ restrictive anorexia and not other forms such as binge/purge subtype or atypical anorexia which are equally common and dangerous although more complicated and probably make less interesting TV.  I’ve had all of those types of anorexia at various points since I was 13 and ironically the restrictive type was the easiest to manage by far- it’s a lot easier to ‘just not eat’ than it is to balance starving, bingeing, throwing up, exercise and try to seem relatively ‘normal’.  I was actually healthiest when I had restrictive anorexia because I wasn’t doing ridiculous things to my body and metabolism, my weight was low but I didn’t have the energy to over-exercise, I wasn’t throwing up so my electrolytes were relatively OK and the worst physical symptom I had was passing out when I got up too fast.  Annoyingly after a few years, just restricting wasn’t enough to manage the intense emotions and obsessions which kept coming back so other symptoms started and that’s a LOT harder to manage and genuinely does make you feel like a total freak and a failure for not being able to manage it properly.

My current diagnosis is ‘atypical anorexia’ because my weight is high and it’s a lot more about the food and eating/not eating than it is about particular weights.  For me, it’s never been about body image- I hate how I look and I look fat even at my lowest weight, and I don’t use mirrors anyway (even when I was inpatient and had to have one in my room for ‘body image’ work, I hid it in the wardrobe and gave it to another patient who actually wanted one).  I want to be a lower weight because I know that under a certain weight, the intensity of my obsessions gets less and because it’s easier to rationalise being selfish, greedy and lazy when you know you’re at a low weight because you logically CAN’T be even though your brain still tries to tell you that you are.  Plus being a higher weight and still having ED issues makes you feel like a massive failure in so many different ways!

I still find it hard to eat anything that isn’t ‘safe’ (ie porridge, low fat soup or salad) and can’t eat in front of people but I really, really want to change that.  I hate that every Christmas, I can’t eat Christmas dinner at the same time as the rest of my family even if it is different food or that I have to make excuses at school for never eating anything.  Even if I was interested in anyone, I’d never be able to go on a date with them because I wouldn’t be able to eat in front of them.  I also still have the constant ED ‘voice’ all the time and I can’t imagine ever not having it- it’s scary to think of because even though I hate feeling rubbish and guilty all the time, it does help to keep me ‘safe’ and less selfish than I would be without it. The other problem is that I have a lot of guilt and anxiety all the time anyway (physically- it’s in my chest and stomach all the time) and that gets a lot worse when I eat pretty much anything which makes it really hard to even think about changing or varying what I eat. But there’s a part of me that really, really does want to :/ one of the things the documentary mentioned that is absolutely true is how much of a paradox anorexia is- there really is two parts of your brain that are constantly arguing and it’s EXHAUSTING.

I still don’t really know what recovery from an eating disorder ‘is’, and the documentary didn’t really help with that.  When I was an inpatient, the focus was on getting to target weight and learning to stabilise there but that isn’t the answer for everyone or even for most people I think.  I’m at target weight and have been mostly for years, but the ED part of me is stronger now than it was when I was a lower weight (because then you feel safer and ironically can eat a bit more), and it seems to be getting worse as I get older.  It’s also hard because in a lot of ways, I don’t really feel like an adult and one of the doctors in the documentary talked about that- she said that if you’ve had an ED for a long time, you’re following its rules all the time and you miss out on ‘normal’ development in the ‘real world’ and I can really relate to that.  I’ve never done the ‘normal’ teenage or young adult stuff like going out and drinking (I always say I just didn’t want to drink- the real reason is that alcohol has too many empty calories), eating with friends or even socialising much because so much of my life is structured around mealtimes.  Even now, I can only meet people at specific times because if I miss a mealtime, I can’t eat for the rest of the day.  Plus when you’re with people, at least 75% of your brain is taken up already with ED thoughts or obsessions and that’s hard for other people to deal with I think even though obviously they can’t see into your brain.

I think for me, recovery would be feeling ‘safer’ and more comfortable both with my body and around eating food in general.  I really do want to have a more varied diet but it would have to come from someone other than me- I’ve tried so many times before but the guilt and anxiety are way too intense, and I kind of need someone to just tell me what to eat so it’s not my choice and to have consequences if I don’t stick to it.  But ED services don’t work like that any more :/ I did ask when I had the assessment the other week but he said that they want to promote choice and independence which is fine when you haven’t had an ED that long but if you’ve had it 19 years, choice is bloody terrifying!!  I really do want to ‘recover’ (whatever that means) but it’s so bloody hard and I’ve been trying on my own for years.  Feel like I’m just going in circles and that makes you feel more trapped which then makes the ED voice stronger and safer :/ really want to break the cycle somehow but I have no idea how.

It really was an interesting documentary and worth watching if you’re interested but be aware if you have or have had an ED- it does focus on low weight anorexia and can be a bit triggering, so please be careful!!  I’m glad I watched it though; it really did make me feel even more determined never to be an inpatient again and it was kind of a relief to realise that there are other people who also have long term EDs so I’m not *too* much of a failure.  Am also even more determined now to find out what recovery from chronic ED actually ‘is’ and how to get there…

Yet another apology post!

Hi guys, just another apology post for not writing much recently! Not been feeling great and been a bit dissociated a lot of the time which hasn’t helped ūüė¶ back to work next week though which I’m REALLY hoping will help…

Got a few blog posts which I’m halfway through writing though so will hopefully post properly again soon. I attempted a run across Scotland which was really tough and had to withdraw partway through so trying to write about that, and been doing a lot of thinking about ED, recovery and what it actually is (kind of following from the post I wrote last year¬†Thoughts about ED recovery¬†but probably more confused by now!) so also trying to make enough sense of it to write about that too. ¬†Fingers crossed I‚Äôll have a proper post written soon and thanks so much to anyone still reading this blog!

Why I really need to make changes :/

Sorry I haven’t blogged in over a week, haven’t been feeling great and not really had anything useful to blog about. ¬†I did manage the soup last week though which was a massive positive! ¬†Took a LOT of psyching up to; there were several attempts where I’d planned to have it but talked myself out of it (I’m too tired, not done enough exercise, got too much going on, don’t need it etc) but I’d promised I’d do it once in a seven day period and last Wednesday was the seventh day so I had to. ¬†The pressure really helped- it meant that it wasn’t a ‘choice’ and I had to do it which took away a lot of the guilt and anxiety about it although I still felt really nervous and ‘wrong’ because it wasn’t what I’d usually have and I didn’t really need it. ¬†But I did it though and went straight out for a walk afterwards listening to Harry Potter to distract, and it wasn’t anywhere near as bad as I’d thought it would be. ¬†I was really anxious afterwards that I’d suddenly gain lots of weight but weirdly I didn’t which was a massive relief! ¬†Tomorrow will be another week so will try it again tomorrow night, *touch wood* it will go OK again…

Things have been a bit rubbish since then though and haven’t managed to do anything else particularly positive which is a bit frustrating. ¬†Had a bit of a mood crash towards the end of last week which lasted into the weekend so spent most of Saturday and Sunday on the cross trainer or bingeing which wasn’t ideal (although I went to an amazing Roger Waters concert on Saturday night so wasn’t all bad) and still feeling overly emotional and rubbish, really hoping it’ll lift soon. ¬†I think it’s a build up of lots of different things- I work in a school and it’s end of the school year which is always hard because of changing timetables and not knowing exactly what’s going on, and kids have left after exams which is also tough because I get attached to kids I work closely with and takes a while to get used to new ones.

We’ve also been studying Of Mice And Men in one of the English classes I work in which is my least favourite book and I find really difficult to read, and it’s been affecting my moods a lot recently. ¬†It makes me feel really guilty, upset and horrible because of Lennie and how he accidentally hurts things without meaning to and it’s NOT HIS FAULT, and he’s actually trying to do what he thinks is the right thing all the time. ¬†The ending is HORRIBLE and so, so hard to read (we had to watch the ending of the film today which I hadn’t seen because the teacher last year let me go and work in another room when the kids were watching it, and it make me so shaky and I couldn’t help crying although I managed to mostly keep in in and thankfully only one boy I was working with noticed and didn’t make fun of me). ¬†It was actually harder to read this year than last year because I was already feeling a bit emotionally overloaded, and it triggered a lot of not-very-helpful thoughts about how hard it is not being able to manage your own emotions and how sometimes it really feels like it would be a good thing to have a friend like George in the last scene of the book (then I feel really guilty for thinking that and the whole cycle starts again). ¬†Not nice!! ¬†But thank God it’s a whole year till I need to read or study it again…

I think one of the massive downsides to trying to challenge your thoughts is that you’re suddenly more aware of everything your brain is telling you and that you’d usually just accept, and it makes the brain arguments so much more intense. ¬†This morning was a really good example of that and it was EXHAUSTING because I was trying to rationalise too many irrational thoughts at the same time but I did actually manage to successfully challenge one of them in the end! ¬†It went basically like this (‘B’ stands for brain/bitch in my head- bold is where I actually managed to challenge it):

*4am, waking up*

B: Get up, time for coffee and go for a run.

Me: I’m tired, I only slept an hour and a half last night and I’ve got a full day of school.

B: Stop being so bloody lazy and get up, you need to run to use up the extra energy from last night because you didn’t go for a walk after tea.

*gets up, immediately feels dizzy and goes back to bed*

*5.30am, waking up again*

B: YOU FAT LAZY BITCH, GET OUT OF BED.

Me: But I’m still tired, I really need to sleep.

B: STOP BEING SO BLOODY LAZY AND GET UP.

*gets up, goes downstairs feeling like a zombie, steps on scales.  Have put on a pound overnight which definitely wakes me up*

B: See how fat and disgusting you are?  Have coffee and get out running NOW.

Me: *feeling like shit, makes coffee and drinks it. ¬†By this point it’s 6am*

B: Stop being so fucking lazy and get ready to run.

Me: I’m still tired, I just want to hide on the beanbag and sleep.

B: Stop putting it off and just fucking RUN.

Me: It’s nearly quarter past six, I won’t have time to run properly anyway.

B: A short run is better than no run you lazy bitch.  Just bloody go.

Me: But I won’t have run enough to earn soya milk and I’ll feel dizzy if I go to school without it.

B: That’s your body playing tricks on you to make you eat- override it, you’re in control. ¬†Just fucking run.

Me: I was planning to go on the cross trainer later…

B: And you’ll come up with a million excuses- it’s too hot, I’m too tired, I’ve been at after school club running after kids… ¬†Stop being so fucking fat and lazy.

Me: But even if I do run, I won’t have time to shower afterwards and I need to get to work.

B: Who cares? ¬†It’s not like you sweat anyway you lazy bitch- you’re not even working hard enough for that. ¬†Just RUN.

*puts on trainers, goes for a run. ¬†Runs further than I thought thanks to constant ‘motivation’ from bitch in my head*

B: See, that wasn’t so hard was it?

Me: But now I feel really weird and dizzy, and I’ve got ten hours of work to get through.

B: But you ran which is the main thing and you can go on the cross trainer later.  That should be enough to balance it out.

Me: I’m dizzy and shaky, I need food.

B: No you don’t you stupid bitch. ¬†It’s your body messing with you, ignore it.

Me: No, I need to eat something, I need the energy for work.

B: No you don’t- stop being so fucking greedy. ¬†Just go to work.

Me: No, I didn’t eat enough on Friday and people at work noticed that I was dizzy and disorientated, and I can feel it happening again. ¬†I’m going to have some soya milk.

B: YOU DON’T NEED IT YOU FAT BITCH. ¬†You only ran four miles, that’s nothing and you haven’t even been on the cross trainer yet.

Me: But the soya milk will keep my blood sugars more stable then I’ll have more energy for the cross trainer.

B: JUST GO TO BLOODY WORK. ¬†You don’t need anything.

*ignores it and has soya milk, then goes to work*

That was bloody HARD!! ¬†Normally, I’d run further than I did this morning and wouldn’t even consider having the soya milk but last week, I felt really ill a couple of days at work and a few people I work with noticed which I REALLY don’t want, and I know it was low blood sugar levels (I was shaky and zoned out, parts of my body felt disjointed and not real, and I was really itchy all over). ¬†I did go on the cross trainer after work and felt ill again afterwards but luckily I had tea pretty much straight away and although I’m still a bit shaky and zoned out now, it’s a lot better than it was. ¬†But it’s things like that that are making me realise that I really do need to learn to manage it properly and I really, really want to be able to. ¬†I hate the constant tiredness and feeling rubbish, and it’s exhausting having to constantly argue with your brain.

I’m REALLY hoping that the more I challenge it, the easier it’ll be but it really doesn’t feel like it at the moment. ¬†It’s hard as well because of feeling generally rubbish and not very motivated, and it feels a lot like ‘I’m never going to be able to change or get rid of it so what’s the point in trying?’ but I also really, really don’t want to lose my job or have to go inpatient again so I know I need to do something. ¬†Feeling so trapped and horrible atm! ¬†But also determined to start feeling more positive about it…

Trying to make sense of my brain…again!

This is a sort of follow up post to yesterday’s¬†Back to more regular blogging!¬†and I’m going to focus more on food/weight-related issues because that’s basically what I’m trying to work on properly at the moment. ¬†Or at least that’s the aim; the whole idea is absolutely terrifying me and I’m not totally sure how or what exactly I’m trying to change or achieve, so I’m sort of trying to make sense of that too! ¬†I’ve been re-reading older blog posts about similar things (especially¬†21/05/07: probably the most significant day of my life. ¬†Reflections a decade on‚Ķ¬†which I wrote ten years to the day after I was last inpatient and I’m still feeling very similar to how I did then) which is definitely helpful to try to formulate some idea of how I’m feeling but my brain is pretty much constant fuzz and confusion all the time at the moment so it’s hard to make any sort of real sense of it. ¬†But blogging is a good way to start!

Another previous post which was useful to re-read is¬†ED relapse warning signs. ¬†I wrote it about a year and a half ago based on a list of yellow/amber/red warning signs of possible ED relapse that I’d written with a psychologist I used to see as an inpatient way back in 2006, and it scared me a bit because I’m starting to show a lot of the signs again which is a definite motivator to try to address it now before it gets too intense. ¬†It’s always hard trying to figure out what ‘relapse’ actually is because I never really fully recovered in the first place but I REALLY don’t want to get back to inpatient point again and even though it would still be a long way off, I also don’t want to lose my job or even risk getting properly ‘ill’ again so I’m trying to use that as a reason to do something about it before it gets to that point. ¬†It’s hard though because although I’m aware things must have changed recently (people have commented on it and I’m definitely more food/weight fixated than I have been in a while), my weight isn’t particularly low compared to how it has been and even though I’m feeling tired and zoned out a lot of the time, I’m not physically ‘ill’ or passing out so it kind of feels like I’m making a big deal out of nothing and just being selfish. ¬†So hard to work it out!

I know I’ve already said it but have got total fuzz brain at the moment and I really need to try to sort it out enough to know what I’m trying to actually do. ¬†I’ve got the bitch in my head pretty much constantly reminding me that I’m just being selfish, I’m a lazy greedy bitch and I just need to get on with it and try not to let people notice but that’s bloody exhausting because the rules keep changing and I’m having to be active and walking ALL THE TIME especially if I’ve binged the night before or not managed to get the right amount of exercise in earlier on in the day. ¬†But it’s doubly hard to think about doing anything else because she starts up more aggressively and it’s really, really hard to ignore or think of anything else. ¬†But I REALLY don’t want to end up inpatient again and I know rationally that that is a possibility however far off, and I also know that the closer you get to that point, the harder it is to change anything so I really do want to do something now to stop that from happening.

It’s really hard when it genuinely doesn’t seem like a big problem at the moment though and even small changes seem really, really scary. ¬†I know my eating patterns aren’t ideal but they never really have been (except briefly just after I was inpatient) and it’s only really since coming off medication that it’s been a more obvious issue because my weight went down a bit. ¬†But it feels so much safer the way it is- obsessions are less intense, it’s easier to rationalise feeling fat/lazy/selfish, I’m constantly a bit zoned out so things don’t get to me as much (although having said that, I had three meltdowns over the weekend including one where I was crying, pulling my hair out and banging my head off the floor so maybe that’s not *totally* accurate), and things seem more manageable than the intense obsessions and mood swings I’d been experiencing. ¬†But at the same time, I’m also not sleeping properly, tired all the time, finding it hard to run properly (and hating it), not really enjoying anything and feeling like I should be exercising all the time even if I’m exhausted which also isn’t great.

A friend who I really trust brought it up last week and said that I really need to make some changes before someone at work says something and so I don’t get to inpatient point again, and she’s not the sort of person who would say things she doesn’t mean. ¬†She’s been really direct and honest about it which really helps to put things into perspective but as soon as I’m on my own and my brain starts up, it gets confusing and overwhelming again and I still have no idea how I feel about it except that it’s bloody scary and I feel stuck and overwhelmed. ¬†The directness really does help though and she’s set me a challenge of swapping low calorie soup for regular soup one night this week which I know doesn’t sound like much but every time I’ve tried so far, it’s sent my brain into overload- didn’t realise how confusing soup could be but after spending nearly 40 minutes in the supermarket trying to work out which one to get.

It was really hard because I ‘need’ the right amount of protein per 100g as well as trying to work out what an equivalent to the soup I’d usually get would be without ‘cheating’ and getting the lowest calorie regular soup which I couldn’t get anyway because it didn’t have enough protein; regular soup cans say they serve two which would mean one serving is less than the low calorie soup I usually get which would defeat the point and be cheating (that caused a ridiculous amount of brain arguing!) and also need it to be an easyish number of calories in the can to work out in a daily amount. ¬†I did finally manage to get a can of soup though which had the ‘right’ amount of protein, counted towards 5 a day, also had a good amount of fibre and was (scarily) almost twice the amount of calories of the soup I usually have without being too much volume which would make me feel too full and risk bingeing straight after, which was a definite achievement! ¬†Haven’t managed to have it yet though :/ I meant to try it over the weekend but had a really stressful few days where nothing really went to plan so going to have it for tea tomorrow night after work. ¬†Really, really nervous but it helps that it’s not *my* choice if that makes sense- it was my friend’s idea and I said I’d try it, and I’m trying really hard to think of it as a ‘rule’ I’ve got to stick to instead of a choice. ¬†Which I know sounds ridiculous but it’s worth a try- every time I’ve tried to make the decisions on my own, I’ve never managed to stick to it and I really do want to make it work this time.

Another ‘rule’ I’ve set for myself is that I need to be doing something creative from 9pm every night- either blogging, drawing, colouring or writing, and I’m really going to try to stick to that too. ¬†Lots of reasons but mainly because it puts a ‘limit’ on the amount of exercise I can do in the evenings- longer evenings has meant a ridiculous amount of walking (or sometimes running) which really isn’t helping and is exhausting, and also because I’ve totally got out of the habit of doing anything creative which isn’t great because creative stuff is a really good way to ‘escape’ my brain for a while and to try to channel it more constructively. ¬†So hoping to stick to that too! ¬†Will see how it goes anyway…

Back to more regular blogging!

I have been ridiculously bad at blogging regularly recently (and yes, I’m aware that recently is pretty much over the last year or so!) and I’m really sorry about that. ¬†It’s been a combination of feeling rubbish, not motivated or focussed and not really having anything interesting other than running to write about, but I’m also aware that all of that is just excuses and the real reason is that I’ve been avoiding actually thinking about anything other than any given day (or usually hour) at a time and haven’t wanted to acknowledge properly what’s been going on in my head which doesn’t even make proper sense anyway. ¬†But I’ve got a million things I should really be trying to focus on and blogging is a good way of trying to make sense of it and having some sort of accountability so I’m going to make a massive effort to stick to blogging more regularly again…

Don’t want to go into too much detail about the last few months and it’s basically an extension of topics I’ve blogged about a lot before anyway. ¬†Short version: obsessions and moods got a lot more intense last summer and into autumn (see previous post¬†Obsessions¬†for more about that) and it started to spiral, and I had no idea how to manage it. ¬†At the same time, I was being assessed by the community mental health team in the area I’d moved to but was told (again) that I couldn’t access services because of autism. ¬†I got really frustrated and asked why I was taking high doses of psychotropic medications if it was a neurological issue and the psychiatrist said that she could see my point. ¬†So I stopped taking medication completely which I *think* was the right decision (horrible side effects and not worth any minor benefits mood-wise) but since then, the bitch in my head has got worse and more aggressive and the obsessions were so intense that I needed to find another way to manage it.

One of the side effects to antipsychotics had been weight gain and I lost a bit of weight when I stopped taking them which definitely helped to feel more in control, and since then my periods have stopped which has meant that the obsessions are much, much less intense and more manageable. ¬†Just as a disclaimer because I know I don’t usually go into detail about specific thoughts or behaviours in case it triggers anyone- I am not at a massively low weight and I don’t plan to be; the weight loss was genuinely a way to manage obsessions which had got to a completely unmanageable level of intensity and I really didn’t know how else to manage it. ¬†I don’t want a full-on ED relapse which is the main reason I’m back to blogging again and will go into more detail about that in another blog post once I’ve got my head around what I’m actually trying to say!

Last week, a friend made me aware that I really need to learn to manage the ED side of things before it gets out of control which is making me feel really, really scared because I’ve never actually addressed it properly before apart from trying to get out of being inpatient and have found functional ways of basically maintaining it without actually trying to change too much and any attempts I have made haven’t lasted longer than a few weeks but the real difference this time is that she seems to think I can actually change and she does genuinely seem to believe that. ¬†Which maybe doesn’t sound like much but after years of people saying I’m “not ready”, have a “chronic” eating disorder, it would be “too difficult to make changes” because of autism, I’m too “entrenched” or whatever other ways medical professionals put it, it’s very, very weird to hear someone say that they genuinely think I can do it. ¬†Especially since it’s someone I trust absolutely- she’s very direct and honest, and I don’t think she’d just say it. ¬†Feels really weird but it’s also made me feel more positive and interested to try to actually change properly than I think I’ve ever really felt, and that’s weird and scary in itself! ¬†Still trying to process it but will write another, more focussed blog post soon.

Detachment

Still with the diary entries from 2007, and 19th May 2007 was a really interesting one because the sensation it describes of numbness and detachment is probably the most significant aspect of ED for me, and it’s the part I really genuinely still miss.


It’s weird reading the way I’ve described it though- the “floating above my body in a parallel universe” is EXACTLY how I remember it, and it felt ‘safe’ and ‘slowed down’ somehow.  It’s different to ‘zoning out’-type dissociation (where you go slightly out of your body and out of sync with time, usually because of anxiety or being overwhelmed) because it’s more subtle and pretty much constant.  The part I liked most was that your emotions ‘switch off’, even obsessive feelings and urges which at that time felt like magic and it really was the only way to escape and to survive.

The part that really surprises me is that I’ve linked controlling food intake with “feelings of power and separateness”, almost like it’s the control of food that gives the detachment rather than the low weight which is what I’ve always (consciously) thought.  I don’t remember writing that and I can’t think why I did.  I hate the idea of ‘ED’ as something separate to you (feels like a scapegoat which makes me feel even more guilty) but it really does read like that came from something ‘other’ than my thoughts.  So weird to read.

The other part that I can remember really vividly is not wanting to affect or be affected by people, and that was the main reason I wanted to discharge.  I’d linked it to the feelings of detachment (because if you’re detached, you can’t be affected) but I was also aware that since detachment was linked to low weight and eating less, that would automatically affect other people so there wasn’t really a way out.  I was feeling so so trapped by then, but also calmer because I knew I’d be leaving in a couple of days once my weight was enough to discharge without risking a section.

Reflecting back over the last decade :/

Really sorry I haven’t posted in so long; had lots going on and not been feeling massively motivated recently.  Had a bit of a weird realisation the other day though- 21st May this year will be ten years exactly since I was last inpatient.  TEN YEARS?!?!  Really, really doesn’t feel like that long ago.  So I’ve decided to revisit my diaries from that time and I’m going to do some blog posts trying to work out what’s changed, what still needs to change and what I could do differently.  Going to be very, very weird but hopefully productive!

SO…  Starting right at the beginning of admission #3 on Saturday 24th February 2007.  Straightaway I’m noticing that it’s my ex-ex best friend from primary school’s 20th birthday which I’m guessing I didn’t even realise at the time which feels a bit sad and selfish (both of those feelings are going to be a recurring theme throughout these blog posts!) although according to the diary, the actual admission was on the Thursday of that week which would have been 22nd February (also a very close friend’s birthday).

I remember that Thursday really, really clearly- I was at college and had been waiting for a call for a couple of days by then.  Then my phone rang in the middle of a philosophy lecture and I had to take it, and it was the ED service calling to say there was a bed available and I had to go in straightaway.  My philosophy teacher was amazing and really supportive, and I felt so weird and guilty telling her I had to leave.  It really, really doesn’t feel like ten years ago and I still cringe remembering it.  Makes me feel so so guilty and horrible!  The decision to go in that time was one of the hardest ‘decisions’ I’ve had to make- it wasn’t really a decision in one sense because I knew if I refused, I’d be sectioned and have to go in anyway but I still had to agree to go in ‘voluntarily’ and take responsibility for it which was really, really  horrible.

It’s the (perceived) impact on other people that’s the hardest part.  I was embarrassed to tell anyone and felt so guilty whenever anyone found out.  I still feel like that now to an extent although I’m a lot more accepting of ‘me’ and how I function now than I was ten years ago when I thought that I was a total failure and that there was something ‘missing’ or ‘wrong’ with my personality which would explain why I couldn’t seem to manage basic adult skills like making and keeping friends, sexual/romantic attraction, going to uni, keeping a job, not getting overloaded or overly intense, not being obsessive etc.  Also ten years ago, I’d never even heard ofAsperger’s and my perspective of OCD was continual hand washing or tidiness which really didn’t fit me so I thought I was just a weird obsessive freak.  Wish I’d been a bit more mental health aware!

Anyway, that’s a brief post about going in for my final (*touch wood*) admission- will be posting more right up till 21st May…

Twelve days in…

Nearly two weeks into Lent and amazingly still going with it!  Seriously didn’t think I’d make it this far.  I’m really sorry I haven’t posted during the week, been totally exhausted and had a lot going on, will try to post more next week.  Also been a bit lazy with DBT skills so definitely going to focus more on that and write some DBT/ACT specific posts…

This week hasn’t been perfect- I’ve been feeling rubbish mood-wise most of the week, underlying anxiety and intense obsessive thoughts which have been hard to manage and that always makes the bitch in my head louder and harder to ignore, but made it through the week without any major slips or meltdowns which given everything that’s happens this week and the amount of stress it’s caused is a massive positive!  And I’ve also managed a couple of pretty major challenges which were a mega achievement for me so not the worst week I’ve ever had.
The start of the week was pretty stressful for various reasons and found it really hard to stick to the meal plan.  Every meal was difficult and the bitch in my head kept reminding me that I didn’t need it, I’m putting on too much weight and everyone thinks I’m selfish and disgusting, and that no ones really cares anyway so there’s no point following through with it.  I managed most of it but felt horrible and so anxious about it, and spent more time on the cross trainer or running than I maybe should have but sometimes it’s the only way to shut her up and I needed to so I could focus on sticking to what I should be doing.

Wednesday was pretty awesome though and a massive positive- I ate food that someone else had cooked and ate it with them at the table!!  It was a challenge for lots of reasons- partly because I hadn’t cooked the food and even though my friend said she hadn’t used oil and I trust her more than anyway, the bitch in my head was reminding me that she could just be saying that and I hadn’t actually seen her cook the food; partly because I had no idea what the right portion was and had to trust my friend’s judgement; partly because it was 7pm which is an hour and a half after I’d usually eat and the bitch in my head really wanted me to just skip tea and not have anything because it was too late and I didn’t need it anyway; and partly eating in front of people at a table which I hardly ever do (I usually eat on my own in my bedroom and have done pretty much always if I’ve had the choice since I was a teenager) although that was easier than it would be anywhere else because I was with my favourite people in the world and at their house, which is the place I feel safest.  Felt really, really anxious about it but it went so much better than I thought would even be possible.  It definitely helped that the food was all ‘healthy’ and foods that fitted into my meal plan anyway, I used a bowl I’ve used a lot before and which I know is about the right portion size (literally- it’s exactly the same size and shape as the bowls from when I was an inpatient) and it was really, really nice to eat with people I love spending time with.  Still can’t believe i actually did it though, especially as it wasn’t planned!  And I did a front flip on the trampoline for the first time ever so double achievement!

The rest of the week was pretty rubbish, lots of anxiety and feeling horrible and guilty but still sticking to the meal plan as much as I can.  Definitely need to make a conscious effort to engage with it properly next week.  Especially because I’ve got the London Marathon coming up next month, am genuinely terrified about it and could really do with being able to fuel in front of people which is still an issue I need to work on…

New week and feeling hungry??

I didn’t sleep particularly well last night and really wasn’t ready to get up when my alarm went off at 5.30am. ¬†I felt totally exhausted and, weirdly, HUNGRY. ¬†I haven’t felt genuine hunger in nearly ten years and it was very, very weird. ¬†My stomach actually hurt with hunger and I felt like it was being sucked inwards- not in the vertigo-y suction of feeling rubbishness but real, physical aching. ¬†For a few moments, I wasn’t sure what to do and wanted to hide under the duvet and try to get back to sleep, but if I did that I’d be late for school so I had to get up.

When I went downstairs, I made some coffee and automatically sipped it slowly so it wouldn’t make my stomach burn any more (weird how things like that come back to you!). ¬†I started to feel really anxious which didn’t help the stomach issue, but I had no idea what to do. ¬†Breakfast wasn’t for another two hours and I still had a cross trainer session to do first but the hunger was making me feel really weird, and I wasn’t sure I’d be OK on the cross trainer. ¬†It wasn’t the physical discomfort that was making me nervous; it was the weird ‘muscle memories’ it was triggering- I felt like I’d fallen back in time about 15 years and I kept having vivid semi-memories of being in Glasgow and feeling my stomach burn with hunger, being at school and feeling like my stomach was clenching itself inwards, doodling pictures of ice cream and chocolate bars during lessons to distract from the burning sensation of real stomach hunger.

The weird thing is that all the times I’ve experienced it before, I’ve been either underweight or losing weight but this time I’m actually eating more than I have done in nearly decade :s it seems totally wrong and counterintuitive to feel that bloody hungry! ¬†Especially since I’d eaten fish, polenta and vegetables the night before and felt totally bloated afterwards. ¬†I compromised and had half a glass of smoothie before the cross trainer (even that felt too much since I hadn’t actually done anything yet) and took a can of diet Coke with me. ¬†I LOVE early morning cross trainer sessions- it’s such an amazing way to wake up and feel like you’re fully connected with the day before it’s started, and the hungry feeling subsided a bit by the time I’d finished so it was just a mild achy sensation in my stomach rather than intense clenching pain.

The rest of the morning was pretty standard- porridge, coffee and medication which amazingly isn’t hurting my stomach the way it used to (it used to feel like a mild burning when I first took it even with food), and I think maybe my stomach’s just trying to get used to eating so bloody much? ¬†I had a pretty full on day at work today and had to stay late for CPD training so I felt like I was packing for a hiking trip instead of a school day! ¬†I think the hardest part was trying to accept that I was going to eat all that food (the bitch in my head was trying to convince me I only needed the baked beans) and that it was OK to have snacks and more than one thing for lunch, and it was exhausting trying to deal with that as well as psyching up for school. ¬†I kept rationalising that it was OK to take the food and if I genuinely didn’t need it, I wouldn’t eat it which made it a bit easier and less anxiety-provoking to pack it in my bag, although I spent most of the day worrying that someone would see it and think I was massively greedy or selfish.

The day went OK- nothing major apart from a few intense anxieties about getting things wrong which is pretty typical for a Monday especially, and I think the Lent resolutions are really helping with managing that because in the scheme of anxiety I’m feeling about foods pretty much constantly atm, a potential mistake that might not even matter to anyone¬†which would usually cause a mini meltdown/panic attack actually doesn’t seem that important and is a lot easier to deal with than it usually would be. ¬†I don’t think my brain or body have enough space for that amount of anxiety without going into shutdown!

After school, the teachers from my department were going for a meal and I wasn’t sure if I was going to go (usually I wouldn’t), but they’ve been so lovely and supportive of me working with them that I decided to risk it and go with them. ¬†Amazingly, it went OK!! ¬†I was so nervous about it and scared of ordering food I didn’t know, but the restaurant had a salad bar with lots of different stuff (including several of my ‘safe’ foods) and it was totally acceptable to just have salad so I did and made a ‘meal’ out of a mix of proteins, carbohydrates and salad in a similar structure to the meal at home would have been. ¬†And no one said anything or commented which was amazing and such a massive relief. ¬†Can’t believe I did it!! ¬†Achievement for the week.

SO TIRED now though, exhausting trying to keep up with it and talk down the bitch in my head who takes every available opportunity to tell me how greedy, SELFISH and ridiculous I’m being and how everyone’s going to be judging me and thinking how horrible and selfish I am, and it’s hard not to listen to it because there is a (pretty big) part of me that really does believe that. ¬†But part of Lent is challenging toxic thoughts and ideas, and I keep reminding myself that if Jesus could last 40 days and 40 nights in the desert with absolutely no distractions while the Devil was tempting him, I can ignore or accept the bitch’s words without acting on them…

Survived the weekend!

First weekend of Lent down and it actually wasn’t as hard as I thought it was going to be! ¬†I always find weekends difficult- too much time, no structure, loneliness and no distractions, and I was really nervous about trying to stick to my Lent resolutions without the structure and distraction of school to help. ¬†It was bloody hard, especially yesterday, but nowhere near as difficult as I thought and *touch wood* have managed to stick (mostly) to the plan, no major ‘behaviours’ and even had a soya latte in Coffee Nero which was a massive personal challenge!

Saturdays are the hardest day of the week- start of the seemingly endless mass of too much time also known as the weekend, no structure, the pressing feeling that I ‘should’ be doing something productive and absolute exhaustion from the school week. ¬†I met a friend yesterday morning which was really nice, and since it was ‘snack time’ I’d decided to have a soya latte instead of black coffee which I’d usually have. ¬†I was really nervous about it, partly in case my friend commented (even though I know she wouldn’t) and partly because the bitch in my head kept telling me that I ‘shouldn’t drink calories’, it was an extra that I didn’t need, it was way more expensive than americano and that I was just being greedy. ¬†I repeated in my head over and over some ‘facts’ that I’d already memorised to challenge her- that it wasn’t any worse than the banana I’d had that I’d had¬†every breaktime at school, it was calcium and protein which are both necessary for runners, nearly everyone in Caffe Nero drinks a ‘calorie drink’ and none of them have immediately gained half a stone because of it, and that one of my closest friends who I really look up to drinks lattes at least once a day with sugar and is one of the slimmest people I know.

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Then I opened my purse and realised I’d got a fully stamped Nero card which meant a free drink, and that seemed like a good omen to get a more expensive drink so I asked for a soya latte with sugar free caramel syrup. ¬†WOW, it tasted amazing!! ¬†Drinking it was hard though- part of me wanted to drink it all straight away because it tasted incredible and was like liquid candy but the other part of me wanted to throw it surreptitiously out the window because it was dangerous and greedy and I wanted more. ¬†So I drank it probably quicker than I’d meant to to get it out the way, and kind of regretted it when I realised I hadn’t really tasted it as much as I’d have liked to. ¬†That’s the horrible part of ‘liking’ foods/drinks- it feels scary and dangerous and you want to get rid of it as fast as you can but there’s also a part of you that you don’t want to admit that wants it (I’m not sure what the best word to use to describe it- it’s not ‘enjoyment’ because of the anxiety and guilt that’s there too but there’s a definite sense of something potentially positive as well).

The rest of the day went OK- didn’t experiment too much but stuck to the plan, and tried to keep some sort of structure with school work and cross trainer. ¬†Today was pretty uneventful- again, stuck mostly to the Lent plan and didn’t really experiment outside of what I’ve been already trying. ¬†I haven’t been feeling great today mood-wise and found it hard to motivate to doing anything; I just want to curl up on my bed with my cat, a hot water bottle and a fleecy blanket, but I did force myself to go for a slow run in between rain showers which helped¬†a bit. ¬†Still feeling drained and a bit zoned but not as bad as I did this morning and without the run, I don’t think I’d have been able to stick to the meal plan. ¬†But on the positive side, still no bingeing!!! ¬†FIVE DAYS ‚̧ longest I’ve managed in nearly eight years…