Positive psychiatrist appointments actually exist!!

This is a bit of a random post because it’s not based around any particular ‘theme’ or event (although to be honest, not many of my recent posts have been!) but thought it was worth a blog post anyway because for me, it’s pretty massively significant. On Monday, I had an assessment appointment with a new psychiatrist which I was really nervous about and not expecting much from it (usually I just get told that because of autism, they can’t help). Amazingly, it was a weirdly positive appointment!! She was very direct and honest which I need, and ridiculously thorough to the point that the appointment took nearly two hours and she’s making another one to finish it off.

The most amazing thing was that she actually didn’t just write everything off as autism- she thinks that personality traits (specifically ’emotionally unstable personality disorder’ AKA borderline personality disorder) are more of an issue at the moment and wants me to read up about it more before the next appointment. AND she’s willing to actually work with me on it!! WOW. Have been reading about it and literally it’s like someone read my brain. So weird and amazing to read about other people experiencing the same sort of thing and to have an actual, real ‘reason’ for feeling the way I do.

This book in particular is amazing:

It’s a really detailed and well-written ‘guide’ to BPD and writes in detail about all the different symptoms, thought processes and behaviours without judging or sounding overly negative or stigmatised about it which a lot of the articles I’ve read have been. It actually made me cry to read it because it made so much bloody sense. Even obsessions, being too ‘intense’ and issues with keeping friendships! I could literally quote half the book in this post but am going to focus on a few pages that I found really, really useful.

This page is incredible. It sort of links to something a friend said to me a while ago that you can’t ‘get rid’ of obsessions or extreme emotions, you just need to learn to manage them and this book explains it in such an amazingly positive way. And it even says that learning to manage the intense feelings will eventually mean that they are less intense which would be an absolute miracle!! Having had 19 years of feeling like I’m never going to be able to deal with it, it really seems like an unreachable goal but definitely one I’m willing to work bloody hard to achieve. Honestly, if I ever manage to be able to deal with intense feelings and obsessions, I think my life would be relatively good and I’d be ‘normal'(ish). New life goal!!

There’s even an actual link to eating disorders in the book! And the really amazing thing about it is that I can totally relate to how it links BPD and ED, much more than I can relate to most ED-specific books or articles. For me, it’s always been about managing extreme emotions and obsessions- low enough weights actually stop them completely which was why I was desperate as a teenager to lose weight. The main reason I binge isn’t for the actual ‘binge’ part; it’s because throwing up helps to shift the intense vertigo-y vacuum inside my stomach. Apart from exercise, that’s the only thing that actually helps with it and gives me a sense of relative calm.

Similar to above, restricting your diet can make you feel calmer and more in control. I can relate absolutely to this page and although i know it’s stereotypical ‘ED’ to be about control, mine has always been more about not eating certain foods or food groups than the weight itself. That came later and only because I realised it stopped intense feelings and obsessions.

The hardest part of the whole autism/BPD mix for me is making, keeping and managing social relationships. I lose A LOT of friends from being too ‘intense’ and I’m constantly scared that people are annoyed or upset with me, find me too annoying, boring or clingy, or don’t want to be friends with me any more. It’s bloody hard not to keep texting friends to check and I used to do that a lot, which would lead to friends asking me not to contact them any more. Now, I’m a lot more aware of it and it really is a relief to read that other people experience the exact same thing and I’m not just a paranoid, intense, horrible person. I can also relate to wanting to just give up on friendships completely but the intense loneliness is too hard to deal with. Makes you feel like you’re trapped in a cycle of paranoia and loneliness that you can’t escape from. But this book says that this is one of the symptoms which you can learn to manage through DBT and awareness which seems too good to be true but am DEFINITELY willing to try…

The last page I’m going to talk about is about self harm. When I read this, I had to re-read it because it described exactly the thoughts and urges I experience on a regular basis. It honestly is an intense self-directed anger and hatred that makes you want to literally scrape your skin off and rip out your flesh which gets channelled into cutting or hitting depending on the situation. When it’s overly intense, it can get to the point where you want to disappear or not exist which can lead to (for me anyway) overdose of medication but I always end up throwing it up ten minutes later because I don’t actually want to ‘die’, just not exist or more specifically, for the intense feelings to not exist. It’s like wanting to kill a very specific part of you (I’ve been calling her ‘borderline bitch’) which I hate and would do anything to get rid of.

The other really positive aspect of the appointment is that I’m changing medication!! Coming of quetiapine which has caused horrible side effects and increasing aripiprazole to make up for it. Really, really hoping it helps!! Anyway, would DEFINITELY recommend this book to anyone who has, knows anyone who has or is interested in BPD/EUPD- it’s an incredible book ūüôā

Comfortableness and Chaos

This is a bit of a weird post but it’s something that a few people have mentioned to me recently and I’ve been thinking about it a lot. ¬†It’s not a particularly easy topic to write about so sorry in advance if this post makes even less sense than my recent blog posts have done but I think it’s important to address and try to process properly.

A couple of weeks ago, a friend brought up the idea of ‘enjoying’ having mental health issues. ¬†My first thought was ‘no fucking way!’- it’s bloody horrible having part of your brain that constantly criticises you and tells you what you should/shouldn’t be thinking or doing to the point where it’s so confusing and exhausting that you have no idea what ‘you’ think or feel any more, and I really hate feeling ‘too much’, intense and obsessive all the time. ¬†But there is a (really guilty) part of me that does feel sort of ‘comfortable’ with rules and criticisms which are often easier to follow than trying to work out what’s expected in ‘real life’ and it definitely feels safer with something keeping you in line, limiting greed or selfishness and (to an extent) you know where you stand with it even if the parameters and rules keep shifting.

Around the same time, another friend asked me if I ‘liked’ the chaos of intense emotions and relationships which is something I really struggle with but is ironically something I seem to be drawn to as well- I do become obsessive about pretty much anything I’m interested in and I know I have to regulate myself a lot with any sort of social relationship because I can become too clingy or intense without realising it, and often it’s with similar types of people which can lead to very intense and volatile friendships which usually don’t last very long. ¬†But I think the two things kind of link- to an extent (and I hate admitting this), the ‘chaos’ is also kind of comfortable because once it’s at that point, you know it won’t get any more intense and you know what you’re dealing with whereas ‘normal’ friendships are a lot more confusing and hard to manage because you’re constantly scared of becoming too intense or annoying without realising it and the other person not wanting to be friends any more. ¬†This is something I’ve been working on A LOT over the last few years and *touch wood* I seem to be a lot more able to make actual friendships (rather than one-way annoyingness) than I used to be although it’s still pretty new and I’m still really nervous about messing it up.

I think I can say for certain that I definitely don’t ‘enjoy’ having mental health issues- yes, there are aspects that are ‘safer’ or feel more comfortable but overall there are way more negative aspects that I’d do basically anything to change or get rid of. I don’t like diagnoses because I think they’re limited and limiting but if I could wake up tomorrow and not have autism or personality disorder traits, I’d be willing to change anything to achieve it and I really am trying even if it doesn’t seem like it. I know everyone has aspects of life that are difficult and that life is never perfect but it’s the intensity of it that I hate and how it impacts on other people as well as just me.

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.

Frustration about mental health and how it impacts life choices

Sorry I haven’t posted much in ages :/ not been massively busy or anything (school holidays atm) but brain has been a bit of a sieve recently and finding it hard to keep up with basically anything that isn’t running so been half-planning blog posts then never getting round to finishing them so if this is a bit disjointed, that’s why! ¬†Thanks for still reading though if you are ūüôā

The main thing I wanted to write about in this blog post is frustration about ‘recovery’ (or not being clinically ‘recovered’) and how that impacts over and over on what you want to do with your life but in order to write about that, it would be important to understand exactly what recovery ‘is’ and I realised I still don’t really know. ¬†On one level, it’s simple- the OED defines it as¬†“A return to a normal state of health, mind, or strength” but that requires an implicit understanding of what ‘normal’ means and anyone with any experience at all of mental health issues in any context will know that that’s impossible to apply universally and doesn’t even exist as a yardstick to measure from.

Another definition would be the absence of symptoms or ‘illness’ but again that’s really difficult with mental health because everyone experiences symptoms of anxiety, depression, paranoia etc at some point and there’s no real way to decide what’s ‘normal’ and what’s ‘illness’. ¬†I heard someone say recently that recovery isn’t the absence of symptoms but it’s when your symptoms don’t bother you any more, which I like as a concept and in everyday life that’s probably the most useful definition I’ve come across but it still doesn’t help when you’re got a clinical diagnosis (or diagnoses) of specific mental health issues that you still show enough symptoms of to meet the criteria so can’t be classified as ‘recovered’ even if you have managed to build up enough coping strategies or techniques that it doesn’t significantly impact your day-to-day life. ¬†I wrote a blog post about similar ideas a few months ago- see 21/05/07: probably the most significant day of my life. ¬†Reflections a decade on‚Ķ¬†if you’re interested. ¬†So complicated and frustrating!!

The reason I’m thinking about this so much at the moment (and this week in particular) is because I applied to foster a couple of months ago and found out yesterday that the application was unsuccessful because of my medical reference which wasn’t that surprising as I’ve had issues with occupational health before when I’ve applied for certain jobs and had the job offer withdrawn due to medical references, but it’s still really frustrating and disappointing. ¬†It’s partly the frustration of medical (mental health) issues continually getting in the way of things I’m really, genuinely passionate about and want to do with my life but also anger because I know I’m mentally more stable over the last few years than I have ever been and I really don’t know what more I can do to prove that to people. ¬†Anger at myself for not having managed to ‘recover’ from a clinical perspective but also (horribly, because I hate feeling angry at other people) anger at the whole system and how restrictive it is. ¬†I know I could be a good foster carer and I genuinely would put the child’s needs above anything else. ¬†It’s what I try to do in every job I’ve ever had- child/young person/service user’s needs are absolute priority and that’s the main ‘rule’ in my life and being totally honest, it’s the main reason I’m still trying to get rid of the horrible parts of my brain because it would be so much easier just to accept it and go along with everything the bitch in my head tells me but I try so hard not to and to be ‘normal’ as much as I can because of the impact that could have on kids I work with or who I’m close to. ¬†Which makes it doubly frustrating when as far as health professionals are concerned, it’s like I’ve not managed anything at all.

The other side to the situation is the fact that I really, really, REALLY want to have kids. ¬†I know it’s something most people want at some point in their lives and sometimes it doesn’t work out for various reasons, but since I was really little I’ve wanted lots of kids and I’d give up anything else to be able to have them. ¬†To me, it’s the point of being an adult and probably the only benefit to it. ¬†There’s already the complication of being asexual and never being in a relationship which is something I can’t see ever changing because I’ve genuinely never experienced sexual or romantic attraction to anyone, and the idea of having sex with anyone makes me feel physically sick. ¬†Then there’s the other problem of having had an eating disorder for 17 years; I still have very irregular periods, I’m not sure how fertile I would be even if I was sexually active and I also know that with my current food intake, it could be potentially dangerous for an unborn baby so would have to make some drastic changes although I think that pregnancy would be a massive motivator for this because the baby would have to come first.

Adoption or fostering seemed the only option which is why it’s so upsetting that it’s not a possibility. ¬†The woman who assessed me was lovely and suggested voluntary organisations which support young people in care and I have applied to volunteer for, but it’s not the same as actually having the parent-style responsibility and relationship with the young person which is what I really, really want. ¬†It’s hard to describe because I don’t really know what the feeling is :/ it’s like an intense need to ‘give’ to and care for another person in a way that’s more than childcare or friendship- I want to be able to fully support someone and for their needs to be my absolute priority, which I know sounds weird and it’s not exactly what I’m trying to say but I have no idea how to phrase it.

I work with kids and have done for years which I absolutely love and I’ve been lucky enough to be able to develop very close bonds with kids and young people, but it’s not the same as being the main caregiver for someone and having that sort of bond with them even though I know that parenting in any form is hard and isn’t always a positive experience. ¬†But even if it’s not, I still want to give it a try- I get really upset when people say things like ‘it’s hard being a parent, you’re lucky you can give the kids back, you wouldn’t feel like that if you had your own’ etc because actually I WANT the challenges of parenthood, I hate having to ‘give kids back’ and (I know this is horrible) I get really, really jealous of parents’ relationships with their kids even when they’re arguing because I really want that sort of bond and to know that even if someone is angry at you at that particular moment, you’re still their parent and there’s still an unconditional bond there which won’t go away just because they’re upset. ¬†I’m not being naive or thinking that parenting is easy or anything like that; I just really, really want to be a parent. ¬†I’m 30 now and have wanted kids for years, and I’m starting to realise I probably won’t ever have them which hurts so much just to think about and I really, really don’t want it to be true.

I also know though that it would be selfish to go through with the fostering application knowing that it could be potentially damaging for a child or young person who’s already vulnerable to have a foster carer with (apparently) clinically significant mental health issues so I have to respect and accept the decision of fostering services even though I am really upset about it. ¬†I’m not angry with them at all- they need to prioritise the needs of young people and I completely understand that, but I am frustrated about the system and how I’m seen as not “mentally stable” enough to be a foster carer. ¬†The main issues brought up in the medical report and in discussion with fostering services were emotion regulation issues relating to ASD (the GP said that he wasn’t confident I’d be able to have enough emotional empathy or understanding to fully support a child with emotional issues) and having a “long-standing eating disorder” which is a factor that has impacted on occupational health in the past and I have no idea what I’m meant to be about it. ¬†Yes, I have had an eating disorder for the last 17 years but I haven’t been an inpatient in ten years, I eat regularly even if it is only certain foods and I am a ‘healthy’ weight.

I know I still have some issues around food and eating but it’s definitely not obvious and it’s mostly the bitch in my head shouting at me 24/7 which is the problem and not the actual behavioural/physical side which I’ve learnt to manage pretty well over the last few years and I’m not exactly going to vocalise the bitch’s words to a young person I’m caring for. ¬†And to me, it’s not as potentially risky as someone who drinks alcohol regularly or smokes (for example) which is totally socially acceptable. ¬†It’s also frustrating because ED services won’t work with me anymore because it’s ‘chronic’ and my weight’s stable so I don’t meet the criteria for ED services but it’s still seen as a medical issue that stops me from being able to do things that I’m most passionate about like having/looking after children, working with young people in mental health services or being a teacher? ¬†I have no idea what the solution is and if anyone has any experience of this, please feel free to email me on rainbowsandrecovery@gmail.com!

Really sorry that this seems to have been a mostly ranting post and haven’t even got round to trying to define ‘recovery’ properly yet. ¬†Will shut up now and save that for another post… ¬†Thanks for reading ūüôā

Running your way to body tolerance…

This isn’t a v long or in depth post, sorry- I ran another ultramarathon over the weekend, have only had 3 hours sleep since Friday and ran 74 miles in that time so I’m pretty exhausted atm!  Wanted to write a quick post about this though because I’m realising more and more that it’s probably the biggest positive factor in preventing an ED (re)lapse (can you relapse if you’ve never really recovered fully?) and I wrote an instagram post about it earlier without really thinking about it.


^YES!!!  I bought these pyjamas literally straight after the run when I was on the way to a B+B, realised I’d forgotten pyjamas and went into Primark to get some.  I was absolutely exhausted, over-emotional and slightly zoned out at the time, and I bought these without really considering what they were like because I liked the unicorn on them and I was post-ultra high and zenlike so nothing really mattered.  It was only later today when I got home from work and looked at them properly that I realised it’s basically a crop top and hot pants!  

I’ve NEVER worn anything like that before but I’ve been feeling kind of ambivalent about my body over the last few days- yes, I hate how it makes me feel and I still feel horrible and uncomfortable all the time especially in the heat but it can run a really, really long way even if I didn’t manage to whole 100 mile event (I stopped at 74 miles because I was starting to feel really ill and my knee was sore).  It’s heavier than I’ve ever been used to and I still feel physically sick if I look in a mirror but without it, I couldn’t run the distances I do which is the most positive part of my life.  Distance running is the best form of mood stabiliser I’ve come across including several different medications I’ve been prescribed over the last few years and I need it to help prevent meltdowns or over-emotion ‘attacks’.  And without the weight, I wouldn’t be able to do that so it’s a bit of a catch 22!  Don’t really have an answer but trying to channel the positivity while wearing the pyjamas… ūü¶Ą

Escape from Meriden- channelling my inner Shell Dockley!!

Sorry I haven’t updated this in a few weeks; had a few issues logging into my account for some reason so haven’t been able to access it to update but *hopefully* sorted now!  Which is good because I’ve been wanting to write this post about a run I did last week ever since I finished although maybe it is a good thing I’ve had to wait a bit because I was seriously hyped after the run and maybe the blog post wouldn’t have made a lot of sense.  It was an amazing run though!!


It’s a run I’ve done before called Escape from Meriden and it’s a jailbreak-style run- you get 24 hours to get as far from Meriden (near Coventry) as you can on foot starting at midnight.  Last time I did it was in November and it was FREEZING, dark, foggy and pretty scary so I was really nervous about doing it again but summer’s definitely a way better time to do it, and it went so much better than the winter version.  It starts in a village hall and I got there pretty early because I was so nervous, and got chatting to a couple of people who I’d met on runs before which is always nice.  One of the things I really, really love about ultras is how friendly and accepting people are, and how they make you feel totally ‘legitimate’ for being there instead of a complete amateur which is how I always feel.  It was raining pretty heavily outside so nice to wait indoors until midnight!  Quick pre-race briefing (basically: don’t die and remember to post back your tracker) then headtorch and waterproofs on and out to the Cross to start…


I’d written the first part of my route on a post-it note sized piece of paper which I had in my pocket and luckily I live close to Meriden anyway so know most of the country roads around there.  I was heading for Warwick down back roads to avoid cars as much as possible while it was still dark and rainy (although God knows why anyone would be driving country lanes at half midnight on a Friday night!).  At the beginning, there were quite a few people headed in the same direction but pretty soon people started to split and I was running on my own towards Balsall Common.  I was feeling physically pretty good- the coffee I’d downed just before I left the house seemed to be kicking in and although it was wet, it wasn’t cold at all which coming from me means it must have been practically summer!  The rain was a bit annoying because it was covering the lenses of my glasses making it hard to see, so I took them off for a while on the basis that I’d probably see better without them given that it was dark anyway.

It’s a really weird feeling running on your own down country lanes at night, and I don’t think I’ve really experienced it fully totally on my own before.  I’ve done off-road running at night and organised events, but never totally alone down narrow roads with no streetlights or pavements and the nearest village a few miles away.  It was pretty scary but not in the same ‘OMG I’m going to die’ was as the November version or the rainy, muddy nighttime trail running from Hope24 2017.  This was more of a creepy, surreal scariness like you get playing horror games on consoles- like a jumpy, nervous adrenaline but slightly detached like you’re not really ‘there’ at all.  I was definitely relieved to get to the streetlights of Balsall Common although there was about 7 miles of lanes to get through after that till I reached the canal at Warwick which was my first real ‘checkpoint’.  I was hoping to follow the canal as far as possible on the basis that I couldn’t really get lost which felt a lot safer!


By the time I got close to Warwick, it was raining like a deluge shower and I was absolutely soaked.  For the second ultra in a row, I was realising that my ‘waterproofs’ really aren’t and even my spare clothes were damp in my backpack.  So I decided to take a quick detour and go via my house to dry off a bit, change socks and put on some dry clothes.  I knew they would be wet again within ten minutes but it’s worth it just for the slight warmth that comes with drying off and dry feet for as long as possible helps to prevent blisters.  I spent a bit longer than I’d planned to giving my cat some attention and refilling my water pack, and found it pretty hard to get going again even though I was only a couple of hours in!

I finally psyched up to going back out in the rain and headed towards the canal.  It’s the part that I run on an almost daily basis so I know it pretty well but even still it’s scarier on your own at 3am.  The rain had eased off a bit which helped and I tried to relax into the rhythm of running in absolute quiet of pre-dawn darkness.  It felt really surreal and I put on some more upbeat music than I’d usually listen to but which really helped to start enjoying the running again even though I was still pretty scared.  By the time it started to get light at about 4.30am, I’d run through Warwick and out of Leamington and was starting to feel like I was actually getting somewhere!


Sunrise (or more accurately, just before) is my absolute favourite time to run and the rain had stopped completely by then so I took my waterproof off, switched to David Bowie’s Lazarus soundtrack and started to really connect with the run.  It sounds really weird and spiritual to describe, but there’s this amazing feeling you get sometimes when you’re running and everything seems to ‘sync’ and you feel totally relaxed, connected and calm in a way I’ve never experienced outside of running.  Sunrise is always pretty magical but especially when it’s a ‘slow’ sunrise because of clouds or mist and you get a gradual lightening of the air around you then an orange-purple tinge to the clouds before it actually starts to get light.  There was a lot of mist on the canal and it was so still before the birds started up, and I stopped briefly to really breathe in the morning before relaxed running again.



By 5.30, the sun had started to come up properly and it was feeling like daylight again, and I had a sudden realisation that I’d made it through the scary night and could be anyone out for a morning jog by the canal which felt suddenly a lot safer.  I got a weird burst of energy from that and hardly noticed the next few miles.  I’d started to get hungry so ate a cereal bar from my mammoth stash in my backpack (had enough food for 24 hours in the form of cereal bars, salted nuts, dried fruit and dolly mixtures!) and drank some more water.  It was exactly 6am by then and I made a ‘rule’ to eat something every hour even if it was just a small amount because I’ve had too many runs recently where I’ve felt sick from not eating enough but feeling too nauseous to eat anything which is the worst thing running ever.

The main issue I had once I’d left Leamington was that I genuinely had no idea where I was.  I knew that I was heading past Southam and towards Daventry but my geography knowledge really isn’t great and I didn’t really have any idea where that was, and there wasn’t enough phone signal to check Google maps (the ordnance survey map I’d borrowed from a geography teacher at school only covered as far as Leamington) so I carried on running and hoped I’d see some sort of map or sign soon.  At about 7.15am, I ran past a boat where someone was on board and I asked him where I was.  He probably thought I was really stupid but said I was leading towards Napton which I’d seen on some online maps so thanked him and carried on running.  I had a bit more signal so risked using my iPhone (which I usually have turned off for ultras to save battery for emergencies) to check Google maps which said there was a reasonably straight road from Napton to Wheedon Bec which would mean I could hopefully refill water and get coffee from somewhere so I started to check every canal sign for that.  Much as the canal really was pretty, I was getting thirsty and caffeine-deprived!


So at about 7.30, I left the canal to run to who knows where.  The road had seemed pretty straight on the map but LONG (about 12 miles) which really wasn’t the most fun running I’ve ever had a pretty scary at times where the road was busy, but after about an hour it turned into rollercoaster-style country lanes which are pretty fun to run and you get to walk the inclines so double win!  I’d filled up water just as I left the canal but it was started to get warm already and I was starting to worry about when I’d next get a chance to fill it up.  I was also starting to get pretty tired by this point and really, really wanted to find some coffee.

By 8.15, a sign said I’d reached Northamptonshire which was a relief because I was starting to think that Warwickshire was the biggest county in the world!  The lanes near Daventry and Newnham were really pretty but it was definitely a relief to get to Wheedon Bec where I was going to rejoin the canal.  I got a take-out coffee from a cafe which was AMAZING and took a quick break to put on sunscreen as the sun really was out by now, then ran down a lane and saw lots of lambs which was really nice, and I rejoined the canal pretty soon after that.  Saw lots more wildlife- swans and cygnets, and a cow drinking from the river- which was awesome after too long on roads. So I followed the canal for a while; nothing majorly interesting to write about but really, really peaceful and scenic.



Once the coffee had kicked in, I started to relax into the running again and realised how lucky I am that my body is capable of running for hours at a time and really connect with and enjoy it, and that’s something I need to keep reminding myself of more often.  Genuinely can’t put into words how amazing it is.  And for me, the most amazing part of running is that the ‘bitch in my head’ actually shuts up for a while and I get hours of relative brain quiet which is the most incredible thing ever and it only really happens when I’m running ultras which is a big reason why I run so many of them!  I am so thankful to my body for being able to run ultras, and to the person who got me into distance running in the first place (you know who you are).

I’d totally lost track of where I was by then and to be totally honest, the next few hours are a bit of a blur.  I know I was heading towards Oxford and that I passed Kettering (got chatting to an amazing woman with purple hair whose partner was in the Marines and still said there’s no way he could run 24 hours!), and the canal blurred into a green heat haze of summer running.  There were taps at some of the locks to fill up water which was a relief because it really was hot during the day, and I met some awesome people on canal boats some of whom offered to fill up water from their supply which was really, really nice of them.  At some point, I reached Stoke Bruene (I think that’s what it’s called?) which had a cafe and toilets which is a massive plus as anyone who’s ever run an ultra will realise!

So I got another coffee which was definitely needed, and completely impulsively bought a Magnum.  Anyone who knows me will know that this is completely out of character- I hate milk, haven’t eaten any form of ice cream in over 11 years and usually the idea of mixing protein (ice cream) with carbohydrate (chocolate) would send my brain into total meltdown with which bit I’m meant to eat first and how but weirdly none of that mattered and I just wanted something cold and minty because it was so bloody hot.  And at the time, it was one of the most amazing things I’d ever eaten although the idea of eating another one now makes me physically retch!  Weird how running totally changes your perception of EVERYTHING.


By mid-afternoon, it was too hot to run properly so I jogged-walked for a bit until it started to cool down a bit.  I was getting through most of my water pretty quickly and added some electrolytes so I wouldn’t get too dizzy, and ate some salted peanuts for extra sodium (and the inevitable giggling about the irony of salted peanuts before exercise definitely gave me a boost- WB friends will get that!).  This was probably the part of the run I found the hardest because of the heat which also meant that tiredness started to kick in, and I was really glad when it started to get cloudy at about 5pm and less humid.  I got a diet Coke and started running more again, and I genuinely couldn’t believe I’d been running for 15 hours!

I knew I was headed towards Milton Keynes where I’d planned to leave the river again and run down roads towards London to see how far I could get because I didn’t want to be running parts of the canal I didn’t know on my own in the dark, and it really felt like I was actually travelling away from the midlands finally.  I got to Milton Keynes about 7pm and started to try to navigate the subway system which is an absolute maze and got lost so many times!!  It was started to get darker now and I really didn’t feel safe running through underpasses I didn’t know when I was totally exhausted and not sure I could outrun anyone, and I started to feel really anxious.  Then, totally randomly, a guy on a bike asked me if I wanted to go for a drink later (?!) which was v v strange considering I’d run 18 hours by then and probably looked absolute sh*t but made me laugh which was definitely a good boost.  I said I couldn’t and carried on running, but couldn’t stop giggling at the irony that the only time I’ve ever been asked out in my whole 30 years of being alive is 18 hours into a 14 hour run!


I FINALLY made it out of Milton Keynes just as the sun was starting to set and was feeling really anxious and panicky by then.  I was also feeling jittery-high which is a weird combination that I haven’t had in a while, and started to feel like I was connecting with God in an amazing way that probably sounds really stupid and ridiculous but I’ve felt it running before and it really is an incredible and literally awesome feeling.  I know a lot of people will say it’s just endorphins and coincidence or that I’ve gone too ‘high’ but this time it really did feel like God was helping me and I’ve even got photographic proof!  At first, I just needed some inspiration and connection, and there were the most amazing sunsets I’ve seen in a really, really long time.  The sky looked like it was on fire and the photos really don’t do it justice.  I felt so amazingly connected and ‘oneness’ which is really hard to put into words.


Then the road changed from how it was on Google maps and I had to try three different directions until I was finally heading south-east again, and I started to get really anxious again. Then out of nowhere, there was a cloud rainbow in a sunset sky which is one of the most amazing and rare natural phenomenons possible and something I’ve never seen before in my life. I’ve seen cloud rainbows three times before but never at sunset, and it was one of the most magical experiences of my life. I could really feel God with me as I was running and I kept thanking Them as I kept going and it felt like I was breathing in some of God’s greatness. I was running faster than I usually would at that point in an ultra but I was still scared especially as it was getting really dark now and I had a weird energy that meant I could keep running even though I was physically exhausted.


The last couple of hours was down an A road which I couldn’t really avoid and there was no real walkway beside it so I was running just outside the white line which was absolutely terrifying. I was convinced I was going to get hit or that someone would stop their car and pull me in, and I tried to focus on just getting past that stretch of road. Then, amazingly, a pathway opened up by roadside separated by a barrier which was so so incredible and made me feel so much safer even though it was still pretty scary running. It genuinely felt like God was looking out for me which sounds stupid I know, but that’s what it felt like.  


And at the same time, I got some texts of encouragement from AWESOME people (you know who you are!) which made a massive, massive difference and really helped to feel safer because it was like people were there running with you so THANK YOU!!!!! I can’t really remember much of the last bit of the run except that I made it to Dunstable *just* (literally got there exactly as my watch hit midnight!) and I was feeling super-hyped, amazing, jittery, scared and thankful all at the same time. 62 miles as the crow flies but amazingly 96.67 miles actual distance!! I met my dad who was driving back from the Isle of Wight and had really kindly offered to pick me up on the way, and slept the whole way back in the car. Total crash but amazing run!


This blog post REALLY doesn’t do the run justice- it was amazing, magical and had so many different moods that I really can’t put it into words.  I am so, so grateful that my body is capable of running that far and that I have amazing friends who send incredibly supportive and encouraging texts when I really need a boost (or if I’m irrationally panicking about nothing), and thank you all so so so much!!

21/05/07: probably the most significant day of my life. ¬†Reflections a decade on…

Today is ten years since I discharged from an inpatient ED unit for the last time.  I genuinely can’t describe the feelings I’m experiencing atm :/ so weird, scary and really surreal.  Really doesn’t feel like ten years ago, and I’m not sure if I’ve moved forward, backwards or even anywhere at all in that time.  Things are definitely DIFFERENT, and mostly in a good way, but so much has changed in both positive and not-so-positive ways that I’m finding it hard to get my head round.  Will start off with the last diary entries from that time, including a scarily relevant horoscope!


They’re very short diary entries and I can’t remember writing them at all, and I think it’s probably because I was so overwhelmed and confused still at that point.  I knew I was going to leave that Monday, but because it wasn’t a ‘planned’ discharge and I was discharging “against medical advice”, I couldn’t really prepare for it properly or even psych up to leaving because it didn’t feel real, possible and something might still happen to stop it.  I’d never have admitted this at the time (even in my diary) but there was a pretty big part of me that actually wanted someone to stop me from leaving.  I was so so scared, didn’t want to go ‘home’ and really didn’t feel prepared for coping on my own but I knew I couldn’t stay in and gain more weight, my periods might come back and that would mean more obsessions and intense emotions, and I wasn’t ready for that either.  

I really wanted someone to give me a massive hug and reassure me that everything would be OK, I could slow things down and take a break from intense ‘recovery’ for a while but I’m pretty good at saying everything’s fine, I don’t need anyone and I’m better on my own so that wouldn’t even have been a possibility.  It’s still something I need to work on I think- there’s a very few people I can be honest with about how I’m feeling but even with them, I’d never even think about asking for a hug even though sometimes I really feel like I need one.  Most of the time I hate physical contact but there are times when I could really, really use a proper hug.  But I never know when it’s OK to ask for a hug from someone or how you do it, if it’s appropriate or they might not want to :/ I’m lucky, there are two kids I’ve known forever who I can hug whenever I see them which is amazing and I get genuine oxytocin from hugging them but they’re teenagers now and I know it’s not feasible to expect them to want to hug me or even spend time with me anywhere near as much as they did when they were little.

Monday came, I’d reached a weight where I could discharge without it being any surprise since I’d been saying for weeks I didn’t want to go over that weight (it was linked to when my periods stopped and really didn’t want them back) and I had to actually go through the process of leaving.  It was HARD, so much scarier and difficult than I’d thought (being totally honest, I hadn’t really thought about the actual leaving part; I just wanted out).  I had to sign forms accepting that I was discharging “against medical advice” and it also had to be signed by ward staff and the consultant psychiatrist before I could actually leave which would be after lunch.  It was horrible signing the form and I felt like I was doing something massively wrong, against the rules and borderline illegal which went against everything I try to do.  I also felt like I was letting people down, especially some of the ward staff who had had a really positive impact and who I really respected (even though sometimes I hated them).  But I knew it was the only way to escape and I was so angry, confused and overwhelmed that I just needed to leave.

I can’t remember anything at all about what happened after that, but I’m guessing it went relatively OK because I’d probably remember anything major.  I can’t even remember how my parents reacted or what it was like going back home, or even what it was like to see my cat again.  The next thing I remember is a couple of days later going to a local primary school and asking if I could do ‘work experience’ there, which the teacher agreed to and that became a massive part of my life for the next few years.

The weird thing now is trying to reflect on what’s changed since then and if I’ve actually moved on in the last ten years.  It’s hard because it’s really difficult to know what ED recovery actually *is*, and so many things I still find hard aren’t actually directly related to ED issues anyway so it’s hard to try to work it out.  And even within ED, there are so many aspects to recovery that it’s hard to define even that!

From a physical perspective, I’d be classed as ‘recovered’- my weight is in the normal range, I have periods, my bone density hasn’t changed in the over 5 years and I have enough energy to do as many physical activities as I want to.  But even with that, I still have a very slow metabolism, low blood pressure and pulse rate, dizziness when I get up too quickly, chronic oesophagitus and a recurring stomach ulcer, lots of dental issues and low bone density.  I know some of that (bone density and dental issues) isn’t reversible but still trying to improve the others especially metabolism.  But overall, I would definitely be classed as physically recovered from an inpatient definition anyway.

Food intake is a tricky one.  When I first discharged, my diet was a lot more varied (and more calories) than I currently eat now because I was trying to match an inpatient eating plan as much as I could although the portions were nowhere near the same size.  That lasted about seven months then started to become more restricted again, and gradually got worse ironically as my weight increased.  The really ironic thing is that in the seven months that I was eating ‘normally’ (three different meals, three snacks a day totalling nearly twice what I currently eat calorie-wise) I was losing weight at a pretty significant rate and actually got to readmission weight by the end of my first year at uni (just over a year after discharge) although that was when bingeing/purging started up again and my weight skyrocketed.  Now, I’m trying to reintroduce a more varied diet but it’s bloody hard and I don’t really know how to do it.  I’ve managed to cut down on bingeing but it still happens at least a couple of times a week and I have no idea how to manage that either.  So I’m really not sure if I’ve got anywhere with food intake and I think I’ve actually regressed a lot rather than progressed.  Big one to still work on!

Mood is another tricky one.  Although I still feel rubbish a lot of the time, I don’t have the constant underlying ‘nothingness’ that I had in 2007 and my anxiety is definitely more under control now which is a positive although it could be linked to the fact that I’m actually taking medication now whereas ten years ago I wouldn’t even have considered it.  In 2007, I still didn’t have periods and my weight was low so I had the surreal ‘detachment’ which was safe and comfortable whereas now I have intense mood swings and emotional reactions which can be really difficult to deal with but it goes both ways- I get intensely excited as well as intensely sad or angry, and much as I find it hard to manage the positive parts kind of compensate for the negative, especially if I manage to apply DBT emotional regulation or distress tolerance skills in a way that actually makes sense.  So I’m seeing that as a positive change even though most of the time it feels negative.

Work and social life is bloody complicated! Technically I haven’t actually progressed at all work-wise :/ I’m still working in a school as a teaching assistant and I haven’t managed to get anywhere career-wise, and if anything I’ve gone backwards since I failed teacher training and have no idea where I’m going.  It really does feel like I’ve wasted the last ten years and I feel so guilty about that.  But I’ve got lots of work experience in different job roles and learned a lot from it (both in terms of skills and how to survive in a work environment), I can eat lunch in front of colleagues now which is a massive thing compared to when I used to hide in the toilets to eat and I’ve been in my current job for more than six months which is the longest I’ve ever had a job.  So positives and negatives; probably overall mostly negative but again I’m working on it and I think it’s moving v slowly in a positive direction…

From a social perspective, I have no idea.  I’m still too intense/clingy with close friends which I HATE and am trying to change, but I think part of the problem is that I don’t have many actual ‘friends’ so it becomes concentrated on the few I have rather than having a range of people to contact or spend time with.  I really can’t see that changing though :/ I’m not great at making friends in the first place and the idea of having to manage lots of relationships terrifies me.  I’m really lucky that I do have a few close relationships with people who *touch wood* can tolerate annoying or anxious behaviour and who don’t seem to hate me even though they know me pretty well.  Two of my closest friends are from when I was inpatient which is amazing because I was sure everyone there hated me and they’re awesome, so accepting and understanding which is really nice.  My other close ‘friends’ are people I’ve met since I discharged- one of them literally right after discharge since he was at the school I started working at the week I left!  It’s weird to think that all my closest relationships happened either as an inpatient or afterwards, and all when I was a higher weight which is really strange because I always thought people would think I’m lazy and selfish for being a high weight.  I have no idea if I’ve moved forward socially or not, but I do seem to have a few stable friendships although I know that friendships are fluid and you can’t rely on keeping them forever and I’m OK with that too.  It’s taken a really long time and I’m still not there yet, but I can accept now that people aren’t static and change over time which can sometimes mean that friendships have to come to an end but that’s OK because forcing it would be an artificial friendship which isn’t healthy for anyone.  Still got so much to work on with friendships but learned so so much over the last year especially.

The other major change over the last ten years is the intensity of obsessive thoughts. Although I still get them several times a day, they’re much less intense now and don’t take over my whole brain the way they used to- like I can actually write this blog without being totally distracted by obsessions!  I still get vertigo and ‘zoned out’ but nowhere near as much, and it’s a lot easier to deal with.  The same goes for paranoid thoughts which again I still experience regularly but definitely not to the same degree.  I don’t really know why this has changed (especially since I’m at a much higher weight- in 2007, I didn’t experience them at all because of detachment but they came back mega strong in 2010); it could be linked to medication or the amount of exercise I do now, but it could also be because of the amount my perspective on relationships in general has changed, and that I actually have ‘real’ close relationships with people who don’t seem to judge or reject me (*TOUCH WOOD*!!!  Still can’t actually believe that) which means I don’t ‘need’ to intensely attach to a specific person?  I have no idea but I’m really not complaining about it!  I’m seeing that as the biggest positive change in the last couple of years and probably over my whole lifetime.  Sounds like an exaggeration but it’s not- obsessions took over my brain for 17 years and it’s AMAZING to have some sort of freedom from it.

The last one is the ED ‘voice’ itself, which again is pretty difficult to figure out.  I’ve only recently started to see it as something separate from my actual thoughts, and I’ve been calling it (her) the ‘bitch in my head’ because for me it’s not just food or exercise- she comments on EVERYTHING, constantly criticises and judges me for what I do or think and makes me really paranoid and anxious.  She’s still there just as strong as she was 17 years ago when I first became aware of something ‘different’ in how I thought or what drove my behaviours (it was the same time the obsessions started so they get mixed up in my memory) but thanks to DBT skills, I’m starting manage her voice a lot better now and to begin to understand her point of view.  It’s really weird- ten years ago, I would never have accepted even that it was a ‘voice’ separate to my own thoughts; I was convinced it was just part of who I was and what I ‘had’ to do to stop the obsessions and intense emotions and so I would be less selfish.  But DBT teaches that two opposite things can be true at the same time and you can accept something without having to believe or act on it, and I’ve been trying to apply this to the bitch in my head- she has her opinions which are valid for her but I can just accept that and don’t need to believe or act on them.  It’s taken a LOT of work and still can’t always manage it but getting better at it v v slowly.  I don’t think I’ll ever be able to to get rid of her completely but I can learn to manage how I react or even listen to her comments, commands or judgements.  The other really useful DBT skill for this is thought diffusion- have mentioned this in a lot of previous blog posts (look for ones under the DBT category) so won’t go into too much detail now but it really does help. Along with the obsessions, this is probably the most significant change over the last few years and has literally changed the way I think and react to critical or ED-related thoughts which I think really is the main reason I’ve managed to stay out for ten years so far and hopefully forever.

I still don’t know what recovery is but I think I’m a lot closer to it than I was back in 2007, even if from a ‘clinical’ ED perspective it wouldn’t seem like it because my food intake is still restricted and I still binge/purge.  I don’t think behaviours are necessarily reflective of progress though (although obviously they can be indicative of an acute or emerging mental health issue and there are degrees of risk which MH services really need to take into account more) and I think with chronic or longer term MH issues, it’s much more about overall progress in a range of perspectives rather than what behaviours you’re exhibiting.  If I took the ED screening test now, I’d score very high because of behaviours I still use compared to 2007 when I didn’t but psychologically I’m much, much more in control now than I was back then.  A lot of it has come from things I’ve learned from friendships, both in terms of losing/gaining friends and in terms of genuine support I’ve had from close friends over the last few years, and I’m so so lucky and grateful for that.  I’ve started to identify less and less with the concept of ‘recovery’ and more with the idea of acceptance and positive management of MH issues, and I’m finding that so much more manageable and ‘concrete’ instead of an abstract ideal that I don’t understand and which may or may not exist.  Also realising that any movement in the right direction is progress even if it’s just a tiny bit because tiny amounts add up and suddenly you realise you’re doing something you’d never even have thought possible but it happened so gradually you didn’t notice.  Thank you so so much to everyone who’s tolerated and supported me over the last ten years ‚̧

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.