Thoughts about identity

At college today, we were set a photography project exploring personal identity and what that means. I found this really, really hard because I’m finding it difficult at the moment to feel ‘real’ and that I actually exist outside of mental illness, and that I actually have an identity at all. Which got me thinking a lot about what identity actually is in the first place and what it means. We had to get into pairs to discuss and make a mind map about identity, and it was really interesting to hear other people’s views- about personality, hobbies, interests, memorabilia, clothes and lots of other things. I’m still not totally sure what it actually ‘is’ though.

It got me thinking a lot about this year in particular and how my own concept of ‘identity’ has changed especially over lockdown. Before, my identity used to be work and the children I worked with, and that felt like my main focus and purpose in life. But then lockdown happened, school closed and suddenly all I was left with was ‘me’ outside of work which I found really difficult to deal with. And then things got more complicated, I handed my notice in and now I feel like I don’t really exist at all. I’m still ‘doing’ things- I’m back at college, I volunteer at a homeless shelter and have just started volunteering back at school again, I work in a supermarket and occasionally at a pub but I still don’t feel like any of that is ‘me’ and I really miss having the kids I mentored to focus on and have as my ‘purpose’.

Lockdown was horrendous- I really didn’t cope with being on my own in the house all the time and felt rubbish nearly all the time. I couldn’t focus on anything and had no energy, I stopped running, I hardly wrote at all and spent a lot of the time crying or sleeping, and it’s been hard to get out of that pattern. I still don’t feel ‘real’ or like I actually exist as a person and it’s horrible. I think mental illness really does take away a massive part of your identity and sucks it into itself, and I don’t know how to get out of that when you can’t seem to fully engage with anything else. Which makes this project doubly hard!

I wrote a Facebook status a while ago asking friends what they associated with me because of how I was feeling and I’m planning to work the answers into an art piece to try to make a visual representation of who I actually am so that I can look at it when I feel particularly bad and try to feel more like an actual person, and I might try to use some of those answers in the photography project. Sorry this post isn’t massively long or interesting- I’m still finding it hard to focus on or engage with anything! But will try to keep the blog more updated and maybe post some work from college at some point…

Explanations and Anxiety

Seem to spend way too many posts apologising for not writing recently!  But yeah, it’s another apology post…sorry!!  Haven’t been feeling great again recently and got ridiculously intense anxiety at the moment which is HORRIBLE and getting in the way of basically everything.  Kind of a long story and won’t go into too much detail but in brief: went to GP, got prescribed lorazepam (on top of sertraline, quetiapine and aripiprazole) and it really didn’t agree with me, was hallucinating and losing hours at a time with no memory which isn’t great when you work in a school, back to GP and got signed off work for a week to stabilise, having pretty major anxieties at school and panic attacks so not in lessons at the moment and doing lots of office-based work instead.  Not fun and genuinely the worst anxiety I’ve ever had.  No idea what’s triggering it but it’s horrible.

I’m trying to see it as Voldemort entering my mind again which for me is the only way really I can make sense of it.  I wrote about this a while ago in Occlumency but basically I try to imagine the negative thoughts and horrible urges as Voldemort planting thoughts in my brain like he does with Harry in Order of the Phoenix, and it’s not actually ‘me’.  Which would be a massive relief because I hate this part of me SO MUCH but I’ve recently lost some very close friends by being too negative and self-critical so I can’t even bloody hate myself properly because of it which is making me feel horrible and trapped. But anyway, back to Occlumency…

I’m trying to focus on the idea that the thoughts aren’t actually ‘me’ which should (in theory) make me feel less guilty about them and be able to challenge them more easily.  I’m really not there yet but that’s the aim, and then I can start to ‘close my mind’ to them the same way that Harry tries to with Occlumency and the mental exhaustion he feels is definitely something I can relate to.

I know this isn’t the most interesting or groundbreaking post; I’m genuinely feeling rubbish and shaky pretty much constantly atm and EVERYTHING is making me cry or have a mini meltdown so I’m kind of impressed it sort of makes sense at all!  Will try to write more detailed posts when my brain is less fuzzy and jittery…

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.

Of Mice and Men- thoughts and reflections

Sorry for not keeping up with massively regular blog posts 😦 been feeling v negative and rubbish over the last couple of weeks and haven’t had anything particularly positive to write about, and since this is meant to be a constructive (and honest) recovery blog there didn’t seem much point in writing about feeling horrible and down.  It’s nothing major, just end of term rubbishness and a build up of feeling lonely and negative which I’m definitely working on but taking more time than I’d hoped.

I know this is going to seem like a bit of a random blog post but we’ve been reading Of Mice and Men with Year 9 at school over the last couple of months and I’ve found it really hard to read and talk about with the kids, and it’s got to the point where I feel rubbish for the rest of the day every time I’m in Year 9 English so I wanted to try to think more about it and process it so that next time we do it in class (this time next year), it hopefully won’t be as much of an issue.  Plus I think it’s been adding to the general feeling rubbish recently which I really don’t like so want to try to work out why and how I can manage that better given that it really is just a fictional book!  Quick disclaimer: I am going to talk about the whole book so spoiler alert if you haven’t read it and MASSIVE trigger alert for anyone affected by learning difficulties, autism or emotion regulation issues.

I read it for the first time last year when we studied it in class with the kids.  It’s an easyish story to follow- set in 1930s America, there are two main characters called George and Lennie who work on a ranch to try to save enough money to get their own farm.  George is a sharp, smart man whose ultimate goal is to own his own farm and live off the land and his friend/travelling companion Lennie who has a type of learning disability (it’s never really explained) and who is absolutely, 100% loyal and devoted to George.  George protects Lennie; Lennie would do anything for George.  But Lennie also finds it hard to recognise, manage and control his own emotions which is ultimately what gets him into trouble even though he doesn’t recognise it at the time.  At the end of the book, Lennie gets into so much trouble that he is going to be lynched by the men on the ranch so George shoots him in the back of the head (without him realising) as an act of kindness and to save him from a much more painful death.

When we read it last year, there were lots of bits of the book that got to me- Lennie accidentally killing small animals by petting them too hard (made me feel really guilty), Candy’s dog getting shot because he was old, Lennie being left out because he didn’t have the same ‘urges’ as the other men (they go into town to play cards, drink and pick up women leaving Lennie behind), Lennie hurting Curley without meaning to because Curley provoked him and building up to the end of the book which is genuinely traumatic to read and makes me feel like someone’s physically punched me in the stomach and is twisting my insides into vertigo.  Even though I know what’s coming, it’s still a visceral feeling and makes me shake and my eyes sting, and it’s hard not to cry even though I know I can’t in front of a class of 14 year olds.

In the last couple of scenes, Lennie is approached by Curley’s wife who is a seductive, lonely woman and who invites Lennie to stroke her hair.  Lennie likes soft things and strokes it.  I can’t remember all the details because I avoid reading this part of the book as much as possible (one teacher I work with is amazing and always warns me when we’re reading this part of the book so I can do work somewhere else for that lesson) but basically she shouts at him to stop, Lennie panics and holds tighter, he tries to stop her shouting but she’s trying to get away and he accidentally breaks her neck.  Then he runs and hides in the brush (near the river) because that’s where George told him to hide and wait if he got into trouble.  George hears about what has happened and goes to find Lennie.  He knows that if the men on the ranch find him first, they will rip him to pieces so he makes the decision to shoot Lennie himself in a humane way so that Lennie won’t suffer or even know anything about it.

Last year, the bit that got to me the most was Lennie accidentally killing Curley’s wife- he genuinely didn’t mean to and he was actually trying to AVOID trouble at the time.  He told her repeatedly to leave him alone and that he wasn’t meant to be talking to her but she kept on talking to him, and finally he lost control completely which really, really wasn’t his fault.  It’s hard when you know that a situation isn’t safe and you need to escape but you can’t- it’s a horrible feeling and the more trapped you feel, the worse it gets and something builds up inside you until eventually you ‘snap’ and can’t control it any more, and it really is like an ‘animal’ urge takes over.  I used to get like that a lot when I had more regular meltdowns and it really is horrible- you don’t really remember much about the actual experience but it’s horrible and exhausting.  All I know is that I’m suddenly screaming, sweating massively, crying, pulling my hair out, banging my head against the door/cupboard/floor, biting or scratching myself or ANYTHING to try to get rid of the crazy intense emotion that seems to have taken over completely.

The only way to get rid of it is for the other person to leave you alone completely but that hardly ever happens and it’s genuinely horrible because you can’t speak or express anything coherently, and you know you’re acting totally irrationally but nothing seems to make sense.  Thankfully I don’t experience it much any more but it still happens occasionally and I really, really hate it.  That’s how I’m guessing Lennie felt at the time when he accidentally killed Curley’s wife, and the really horrible thing is that I can imagine how easily it could happen- I’m a 5 foot 4 relatively small woman who’s not that strong but Lennie in the book is described as massive and very strong, so I can see completely how easy it would have been for that to happen if he felt trapped and panicky.  And I also know how horrible and guilty I feel after having a meltdown and that must have been multiplied a million times for Lennie, especially as he’s worried he’s going to lose his only friend who means more to him than absolutely anything else.  So it’s a really, really horrible part of the book to read.

Weirdly when we read it this time, it was actually the next scene that got to me the most. When Lennie’s waiting in the brush, he starts to hallucinate and the visions he sees and hears are horrible, negative and critical.  It’s like his version of the ‘bitch in my head’ and some of the things they say are almost word for word what the bitch in my head says (and is saying on a pretty much hourly basis atm), and that was really surreal and hard to read.  The line that gets to me the most and that I can’t get out of my head atm is when the giant rabbit that Lennie hallucinates keeps telling him that George is going to leave him.  This is the quote from the book:

“Well, he’s sick of you,” said the rabbit. “He’s gonna beat hell outa you an’ then go away an’ leave you.”

“He won’t,” Lennie cried frantically. “He won’t do nothing like that. I know George. Me an’ him travels together.”

But the rabbit repeated softly over and over, “He gonna leave you, ya crazy bastard. He gonna leave ya all alone. He gonna leave ya, crazy bastard.”

Just typing it makes me cry and I’ve got mega vertigo even thinking about it.  Because it’s so bloody true, and I know it’s not just people with learning disabilities who can relate to that.  I know I’m not the easiest person in the world to be friends with- I’m too intense, clingy, overly sensitive and even though I try not to act on it, people always get fed up with me and I hardly ever manage to keep close friends because of being too ‘much’.  I lost my closest friend a couple of years ago (wrote a few blog posts about it last year- see Friendships and mindfulness and TOO MUCH EMOTION especially) and since then I’ve realised that it’s pretty much impossible to form and keep close friendships because I’m always going to lose them, which is horrible and hard to accept but it’s definitely safer to recognise and try to accept it than keep losing friendships that I’ve accidentally got too attached to.  But even though I can recognise that, it doesn’t stop it hurting and definitely doesn’t stop the paranoia about it which is particularly intense atm because of losing another close relationship a few months ago, and reading Lennie’s hallucinations which basically mirror my own ‘voices’ and paranoia was a bit too intense and surreal, especially as I’m already feeling more vertigo-y and rubbish than I was this time last year.

The other part of the ending of the novel that really got to my both last year and this year is George shooting Lennie.  Last year, it got to me because of the more obvious reason- however ‘kind’ the action is, Lennie is being killed because he is ‘too much’ and can’t manage his own emotions, and I could identify with that way too much.  When I read it for the first time last year, it made me feel rubbish and horrible because of feeling like I wasn’t good enough, people were fed up with me and it would be better for everyone if I didn’t exist and I still had those feelings this year but it was lot more intensified and with the added complexity that reading it a year on, I actually felt almost envious of Lennie and then felt massively guilty and horrible for feeling that.  It’s really hard to explain and I feel really weird and guilty for trying to put it into words, but I do feel very, very jealous that Lennie has a friend as close as George is and who is willing to put his (Lennie’s) needs above his own feelings.  I hadn’t really thought about George’s perspective on it before but we had to discuss it in class and he must have felt massively conflicted and guilty for effectively having to kill his best friend and probably the only genuine human connection he has.  In class, the kids had to come up with what they thought would happen next (George gets his own ranch, George meets a girl and settles with a family, George continues to work at the ranch etc) but my main thought was that George would now be totally alone and probably wouldn’t be able to deal with the guilt and loneliness, and I honestly think he’d probably use the gun on himself.  Which makes the ending of the book doubly sad and horrible to process.

The hardest thoughts I have about the end of the book though are definitely the horrible jealousy about Lennie and George’s relationship, and particularly Lennie’s death.  Because at the moment, I’m totally aware that I’m constantly ‘too much’ for people and the only way that seems to work to manage that (the over-emotion, mood swings and obsessiveness) is through food and weight which annoyingly also seems to end up affecting other people and there genuinely doesn’t seem to be a ‘safe’ solution.  I’m not saying I’d ‘do’ anything about it because that would also be ‘too much’ and affect other people (especially given that I work with kids) but Lennie is lucky in that he has a friend who is able to see the bigger picture and act in a way that is probably the safest and most humane way for him in the long term, and saves him future suffering.  Obviously I know that that isn’t a practical solution but I really hate how it feeds into negative thought spirals that are so hard to manage.

I can rationalise the thoughts and I know it’s not a practical or helpful way to think but it’s been HORRIBLE recently trying to manage this amount and this intensity of negative thoughts about it while we’ve been reading the novel and especially having to watch the film (the ending twice).  There was one lesson where I was feeling particularly rubbish already and genuinely couldn’t hold in crying which was really horrible and embarrassing, but luckily only one student noticed and he didn’t make a big deal out of it.  It’s still really getting to me though and I can’t get the ‘rabbit voice’ out of my head.  It’s pretty much how I feel about relationships in general- I know they’re fluid and not permanent but it’s so hard to actually accept that, and sometimes it seems easier not to get close to people at all because you know they’re going to get fed up with you, but at the same time it’s horrible and lonely when you don’t have any ‘real’ people contact outside of working with kids.  But also better than losing close friendships which is the worst feeling in the world so a bit of a no-win situation!  Which is maybe the point of the book?

Trying to end on a positive: even though I know that friendships often don’t last, it’s something I’m trying really, really hard to work on and awareness definitely a big step towards that. DBT skills are also really, really helpful in managing interpersonal relationships and wrote about that last year in a blog post called Celebrating 400 years of Shakespeare with DBT skills– please read for more info! And will include a list of things I learned from that here because it’s definitely something I need to revisit:

1 Take every friendship at face value.  Don’t overthink it, make assumptions, have unrealistic or idealistic expectations, or make any judgements at all.  Try to take the friendship as it comes and use mindfulness or grounding techniques to manage anxiety.

2 Friendships are fluid and changing.  There is no such thing as a ‘best friend’ or ‘forever friendship’, however amazing that would be.  Enjoy the relationship when you can but don’t have any expectations that it will last forever.  Practise ‘beginner’s mind’ (seeing every experience as the first time you’ve experienced it, without any preconceptions or judgements) and don’t overthink it.

3 People change and that’s part of life.  If a friendship ends, it might not have anything to do with you whatsoever- the other person might have changed or moved on and THAT’S OK.  Growth is part of life and people move on at different rates.  That doesn’t make it any painful, but taking away the guilt or self-criticism will help you move on from it a lot more easily.

4 Be open with people.  Honesty and openness in relationships is the most important part of a healthy relationship and will reduce anxiety more than almost anything else.  Anxiety and particularly paranoia come from uncertainty and thrive in self-doubt or assumptions.  If you’ve got a gut reaction to something- check it out.  Don’t let it spiral into full-on paranoia or depression because then everything’s skewed through a fog of thoughts and judgements and you’re likely to damage the relationship without realising it.  Sounds cliched but if the other person’s worth being friends with, they’ll be honest with you.

5 TRUST.  This is one of the hardest ones for me and there’s different ways it’s relevant to friendships but the some of the key points are to trust that the friendship will still exist even if you’re not constantly contacting the other person, trust that the other person will be honest with you, and trust that the other person really does want to stay friends with you.  I find all of these really hard, especially the last one, but they’re so important and I think they get easier the more you do them…  It really relates back to the mindfulness idea and I’m trying really, really hard to use that in my current friendships.

Either way, I’m really, really glad we’ve finished reading it for this year and I don’t need to think about it for another ten months!  Definitely not my favourite book but need to keep reminding myself that it was written in the 1930s and things have changed and improved A LOT since then thankfully…

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 🙂

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… 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 🙂

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.

On this day ten years ago…

Still re-reading my diary from my last inpatient admission in 2007 and getting close to discharge…  It’s so weird reading it now- so much has changed but weirdly my thoughts and feelings haven’t changed that much and I can still totally relate to so much of it… :/ 


I can remember that week like it was only a few weeks ago rather than a decade :/ I felt so trapped and guilty, and every choice seemed wrong.  I didn’t want to stay because it was wasting people’s time, I felt like everything I did was affecting someone else and I was being so selfish allowing my life to be ‘put on hold’ instead of being at college and working.  But when I decided to leave, it made me feel even more selfish because suddenly people wanted to talk about that and it took up so much group time and I hated it.  I literally just wanted to disappear and not exist any more but that’s even harder in a psychiatric ward than it would be anywhere else, and I hated it (and myself) so so much.  It really was the worst week of my life.


This basically sums up exactly how I felt ten years ago, and there’s not much I can add to it.  All I can think now is that yes, I was being selfish and self-absorbed but also that that really is part of having an acute eating disorder- your life becomes eating/not eating and you can’t see outside of your own ‘bubble’, and it’s even worse as an inpatient where you’re totally out of control and hating yourself for it so you become even more self-absorbed.  I did manage to stay out though, even though I know nearly everyone thought I’d be straight back in.  And ironically, the decision to leave is the most assertive thing I have ever done in my life, and probably the most positive choice I’ve ever made.  I wanted to ‘recover’ on my terms and I knew then (and am even more convinced now) that for me, inpatient treatment was actually detrimental in the long term because I became dependent on the routine/structure and it was/is so hard to break free from.  I’ve only managed it through ultrarunning, and still working on it.  Yes, recovery might have been a lot slower than if I’d stayed inpatient but that would have been a ‘false’ recovery based on following yet another set of rules, and I want to escape all of that.  I’m not there yet but am way, way further than I was in 2007.


The last part of May 18th 2007’s entry surprised me, and I’m still as confused about it as I was then.  Although now I can see that it’s not that I get ‘too close’ to people- it’s that I give them too much significance and get too dependent on certain people, and that’s a massive difference because there isn’t a reciprocal closeness and it’s ‘safer’ to an extent because it’s mostly one-way.  Maybe she was right…?  Something that needs a lot more thought, I think.

Coming scarily close to the ten year mark and still not sure how I feel about it!  It’s a big achievement in a lot of ways but there’s still part of me that feels like a total failure because I’m still working at it and not ‘there’ yet, or even sure where ‘there’ is but will post more about that nearer the time…