Even more thoughts about ED recovery!

[Obvious trigger warning: this post is about eating disorders and has a lot of honesty that might be triggering for people experiencing EDs, even if you are recovered.]

I was talking to a friend a few days ago and she said that I was doing really well with eating regularly and being a healthy weight, which I know is a positive. But she also said that I don’t have an eating disorder any more which for some reason really upset me and I wasn’t really sure why- I know it’s a good thing, I don’t want to be seen as having an eating disorder or be defined by it, I want to be healthy and I REALLY want to have a baby but it still made me feel really weird and upset. Which got me thinking even more about what eating disorder recovery actually is and what it means. I’ve written some posts about this before (Thoughts about ED recovery and (More) thoughts about ED recovery) but I’m realising more and more about it the further into recovery I get.

I know that recovering from an eating disorder is much more than just gaining weight and eating three meals a day- if that’s all it was, I’d have recovered every time I was an inpatient! But I’m still not totally sure what it actually means. I still have a very strong ED ‘voice’ in my head all the time, I get anxious every time I eat or am near food that’s high in calories (which is a challenge since I’m currently working in a pub!) and I eat the same foods every day but I don’t act on the ED thoughts or urges- I don’t skip meals (unless I’m in a situation where it’s physically impossible such as in the middle of a shift at work), I don’t binge or purge any more, I eat even when I feel so anxious my stomach is churning and I feel physically sick, I’m even drinking bloody Fortijuce because I need a certain amount of calories to absorb one of the medications I take. So on a surface level, maybe I am ‘recovered’. But that thought genuinely terrifies me and it’s taken a lot of thinking, honesty and admitting things I’d rather not to work out why. Which is what this blog post is about, and PLEASE don’t judge me!!

I know it’s not possible to recover from an eating disorder and still have one- the two are mutually exclusive. But it IS possible to both want to recover and still (secretly) want to have an eating disorder and I think it’s a lot more common than most people realise. I want recovery- really. I want to be ‘normal’, I want children, I want to be able to eat naturally and in front of people, not feel anxious around food, not think about food every bloody minute, be able to eat out or at friend’s houses, even have a normal Christmas dinner. But the idea of not having an eating disorder honestly is so scary and I think it’s even more scary than the idea of living with one for the rest of my life. I’ve been thinking about it a lot over the last couple of days and I think there are a few main reasons which I’ll go into more detail about- the fact that I’ve had an ED for 20 years which is nearly two thirds of my life so the idea of change is really scary; the idea that the ED keeps me ‘safe’, less selfish, greedy or lazy; feeling ‘in control’, less chaotic and being able to manage emotions better; and the hardest one to admit- losing an ‘identity’ or something that is actually a big part of who you are.

The first and most obvious reason is that I’ve had an ED for most of my life and I can’t actually remember a time when I DIDN’T have a critical voice in my head telling me that I was fat, selfish, greedy or lazy and commenting on what I ate. Even before the idea of an eating disorder was first mentioned by a doctor when I was 13, I knew I was fat and that was why I was selfish, didn’t have any friends and messed things up all the time. The first time I remember consciously thinking that was when I was in Year 3 and tried to hold my stomach in for school photos, in Year 4 we had to weigh ourselves in a maths lesson to plot on a graph and I lied about my weight because I thought it was too high, in Year 5 I was embarrassed about having boobs and needing a crop top so I refused to wear one even though my chest hurt and rubbed against my school shirt, in Year 6 I made my mum buy an age 9-10 top for the leavers’ disco even though it stretched over my chest because I didn’t want to get age 11-12 when I wasn’t 12. I can’t remember ever eating food without feeling guilty about it although I must have when I was really little, and the idea of being able to eat without feeling anxious or guilty is weird and scary and doesn’t even really seem possible. And I’m scared of change which is another factor that makes the idea of recovery even more scary- the thought of change makes me feel shaky and like my stomach has dropped out, even though I know that you need to change to grow and move on. I think autism doesn’t help with this- with ASD, you get ‘stuck’ in patterns and behaviours that feel safe and make the world less chaotic, and it feels impossible to change. But I also know that is IS possible to change and that the world doesn’t end or even feel that different if you break it down and do it step by step. It’s not true that making the first step that is the hardest; they’re all equally hard but really, really worth it.

One of the biggest fears I have about ‘recovering’ from ED is the idea that without it, I’m fat, selfish, greedy and lazy and it’s the eating disorder that stops this from taking over. And it’s hard because it genuinely does- if I’m not eating much food, I can’t be greedy; if I’m exercising every day, I can’t be lazy; if my weight is low, I can’t be fat. But having an eating disorder DOES NOT make you any less selfish and actually makes it worse- you focus totally on yourself and what you are/aren’t eating, when you’re a low weight people worry about you which is incredibly selfish, and it’s hard to focus on other people when you’re constantly worrying about food or feeling guilty. But it’s also hard to fully believe that when you’ve got a ‘voice’ in your head telling you the opposite, the only way to stop being selfish is to lose weight and take up less space (physically and emotionally), the reason you’re lazy and greedy is because you’re fat and losing weight will make everything better… SO BLOODY HARD to work out what is real!!

The next reason, which links to the last one, is that the ED helps you to feel more in control and manage emotions better. This is hard to argue against because in a lot of ways, it does- restricting food and/or losing weight really does ‘blunt’ or even get rid of extreme emotions (at least until your body adapts and it doesn’t work any more), and for years this stopped me from wanting to even try to recover from ED. But after about 15 years of food restriction, it didn’t seem to work any more and I was experiencing extreme emotions, mood changes and obsessions at the same intensity even when I lost a lot of weight or severely restricted food intake again. But there’s still the voice in my head telling me that next time it will work, I just didn’t lose enough weight, I can get back in control of my emotions and especially obsessions without needing multiple drugs and that all I need to do is lose more weight. It’s so hard to fight against all the time and it’s exhausting. And I want it to be true so, so badly!! But rationally I know it’s not- I have BPD and the only way to actually (and consistently) manage and control extreme emotions and obsessions is to find the right balance of medication and be able to access psychological support and especially dialectical behaviour therapy which you can’t do if you’re not eating consistently.

The last reason is both the hardest to admit and the most complicated to explain- that not having an eating disorder is like losing a big part of your identity. I’ve had an ED for 20 years which is nearly two thirds of my life, and it’s unfortunately a big part of who I am which I’m really, really scared to lose. I’m not saying that I like having an eating disorder or that I want it- I don’t, and I genuinely hate the shitty part of my brain that tells me constantly how fat, lazy, greedy and selfish I am for even thinking about recovery but I am scared to ‘not’ have it if that makes sense. Which I’m sure it doesn’t so will try to explain! When I was first diagnosed with an eating disorder, I was really, really ashamed of it and didn’t want anyone to know. When I was in hospital, I only told one friend where I was and told my parents not to tell anyone although I’m guessing quite a few people knew by then and especially as I was in hospital over the next two years. I don’t like people associating me with having an eating disorder and outwardly, I really DON’T want it to be part of my identity.

But inwardly, it really, really is and I’m scared of losing that. I don’t think the voice will ever go away but I don’t listen to it as much any more and I definitely don’t act on it so I suppose outwardly, it does seem like I’m ‘recovered’. But does that mean I have to eat like everyone else? Do I need to eat fat? Do I have to eat different foods every day, eat ‘impulsively’, not stick to a meal plan and timings, have snacks and actually WANT to eat? Because all of those things terrify me, more than losing so much weight I need to go into hospital again or making my already rubbish bone density, teeth or heart rate worse. I don’t want to be ‘ill’ or be seen as having an eating disorder but at the same time, I’m scared of not having one because it means confronting all of the fears that have been a part of me for so long and changing so much of what makes me ‘safe’. But I want to be able to have a baby, be a ‘normal’ adult, experience sexual attraction and actually have an identity that is ‘me’ and not eating disordered or ‘ill’. And I know you can’t really have both, and that’s what I’m scared and confused about. And maybe this is all part of ‘recovery’, which I’m still not really sure what it actually is!

I know this blog post might read a bit negative and I honestly don’t want it to. I’m just a bit conflicted about the whole concept of recovery at the moment- lockdown threw everything into a bit of confusion and although I ‘saw’ a really, really helpful psychologist over lockdown who helped me get back into a regular meal plan and different foods each meal, I’m still feeling a bit overwhelmed by all of it especially as I’m taking a new medication which requires a minimum amount of calories to be absorbed! But I think the fact that I’m still trying SO BLOODY HARD and I really, really want to work it out and ‘get better’ means that I probably do want recovery, once I figure out what it actually is… Just so confusing and hard to get your head around!

Thoughts on social distancing and isolation

I’m so sorry I haven’t written in so long; I took the blog offline for a while because I got a bit paranoid about people reading it and became completely convinced people I knew were reading it even though I hadn’t shared it with them.  I’ve since changed the domain name and *hopefully* if anyone was, then they won’t be able to find it now but I don’t know how they would have found it anyway and tbh, it was probably just me being over-paranoid anyway!

SO…back to blogging.  I’ve really missed it; it’s one of the only ways I can try to actually make sense of my brain in a way that other people can understand and maybe relate to, and I miss that connection.  Which is especially true now we’re in the middle of social distancing and self isolation!  It’s a weird and disconcerting time for everyone and I’m swinging between being kind of relieved that for once it’s not just me feeling lonely, anxious and guilty all the time but then feeling really guilty for thinking that and just generally overwhelmed by the whole situation- again, like most of the world!

It’s weird that in one sense, not much has really changed- I was signed off work for two weeks before lockdown started anyway and it’s not like I had a particularly active social life (or even one at all).  But I had school and it was the hope of going back to school that had kept me going while I was signed off, and the idea of schools closing before I could go back felt really horrible and disorientating.  I know that a massive proportion of the country are feeling similar with schools closed and exams cancelled, teachers are feeling disorientated and kids are stuck without the structure of school, and for many Year 11s and Year 13s, they didn’t even get a chance to ‘leave’ school properly.  So in the context of that, how I’m feeling really doesn’t even compare to how a lot of people will be feeling at the moment but for me, it was the loss of hope and possibility of structure, purpose and social contact that really got to me the most.  And it’s still so, so hard to deal with.  I’ve set up a website of fun activities, quizzes and puzzles for kids off school to try to keep them entertained and I’m updating it every day but it still doesn’t feel ‘real’ or like there’s any actual point to it.  Trying to focus on it as a distraction and purpose but it’s hard when I don’t know if any kids are actually using it!  It’s Purple Jedi Activities if anyone’s interested ūüôā

It’s hard to work out what’s going on at the moment because before coronavirus took over the news and lockdown started, I was already having issues with medication, mood swings, anxiety and paranoia and the current situation really hasn’t helped.  It’s been going on for months- I started to feel rubbish again just before Christmas and it got progressively worse up till February when I kind of hit a massive low and just felt horrible, guilty and lonely all the time but so much that it hurt.  I had a couple of overdose attempts (which I’m rubbish at anyway- both times I panicked afterwards, tried to throw up, felt ill later and went to A+E) and have been having a lot of issues with mental health services recently because I “make people anxious” and it’s a “barrier to treatment” but I honestly don’t mean to and it’s making me feel so shit and trapped.  Long story; I ended up increasing medication to the point when I felt genuinely stoned and spun out all the time which wasn’t safe, was signed off work and have been trying to get the right balance of medication since then.  Currently on a mix of vortioxetine, quetiapine, pregabalin, lorazepam and zopiclone and trying to find the right amounts of each one so that I’m not too hyped, panicky or suicidal but can also function relatively OK day-to-day.  Really tough!!

But anyway, that’s just background :/ I think even without the Covid-19 situation, I’d be a bit all over the place atm but now it’s like the world has honestly gone nuts.  And for once it’s not just me!  It’s crazy to realise it’s a global issue and that the majority of the world is feeling scared, overwhelmed and anxious atm which is weirdly reassuring as well as a bit scary in itself.  For me, the hardest parts are the lack of structure which leads to feeling chaotic, ‘vertigo-y’ and like there’s no point, and the isolation which leads to intense loneliness and feeling cut off from everything.

One of the things I really struggle with is the idea that people will totally forget I exist if they don’t see me, and it’s so so hard not to keep contacting people I care about all the time to check.  And it’s SO BLOODY LONELY isolating on your own and not knowing when you can see a real person again.  I’m not a physical contact-type person but right now, I could really, really use a hug and I need it so much it actually hurts- my whole body is physically aching and tingling with anxiety and loneliness. And that must be a million times harder for people who are used to physical affection!

I realised recently that one of the main criteria for diagnosis of BPD is ‘fear of abandonment’ and being isolated on your own feeds into it- it really does feel like you’ve been abandoned by everyone and everything and I’m having to keep reminding myself that it’s a global situation and not just ‘me’- support groups stopped because they had to with social isolation not because they didn’t want me in the group, I’m not on the school rota v often because they’re limiting staff in school not because they don’t want me in, people aren’t messaging back because they’re overwhelmed and scared like everyone atm or busy with other things not because they hate me, social distancing was not introduced because I’m too intense and people need a break from me! I know it sounds over-dramatic, self-centred and ridiculous (which it is) and I know that rationally but it feeds into the main idea that people just don’t want you around which still really hurts and makes you feel rubbish.

One of the other criteria for BPD is ‘chronic feelings of emptiness’ which I’ve always referred to as ‘vertigo’ and it’s so, so intense at the moment without any real purpose or connection.  For me, that’s the part that leads to pretty much constant suicidal thoughts because there really is no point and I’m so scared people I’m close to will forget about me, and it’s so hard to manage.  But I can’t act on any of it atm anyway because I don’t want to put any extra pressure on the NHS by having to go to A+E so feeling really trapped and rubbish.  Which I’m trying to channel into more positive distraction but is leading to a lot of negative behaviours which I hate but tbh if it means I’m not overdosing or ending up in A+E then it’s not the end of the world.

The other overwhelming feeling atm is guilt.  Which tbh isn’t just atm- I feel guilty A LOT of the time anyway but it’s constant now and literally taking over most other feelings.  Part of it is justified- I know I can be too intense and needy and although I really try to manage it and not keep contacting people, I am still ‘too much’ when I talk to people because I honestly am feeling so horrible so much of the time and it’s hard not to let that show.  But I keep apologising and trying to let people have the choice if they let me contact them or not, but I still feel shit for being like this in the first place.  I really am trying to change it- I’m doing a lot of online courses in Food and Nutrition, Health and Social Care and some self-help courses for BPD which challenge viewpoints and behaviours but it seems to be taking a really long time to see any change at all which is frustrating and I just wanted to be a nicer, less draining person.  But at least one positive to social distancing is that people don’t have to put up with me in person any more!

One of the other issues I’m finding hard (and links to guilt) is feeling like everything is my fault.  This is something I’m challenging a lot atm- I know rationally that I am not all-powerful and I definitely didn’t start coronavirus or create the crisis that the world is in at the moment, but I still feel really, really guilty that people are dying all over the world and it feels like I should be doing more to stop it.  I’ve signed up for NHS volunteers and for social care volunteering but haven’t heard back yet, and I’m aware I’m a drain on NHS resources even without Covid-19 pressure which makes me feel really guilty.  I’ve been in touch with CMHT, ED services and the crisis team a lot over the last few weeks because I genuinely don’t feel safe in the house on my own, partly because of intense suicidal thoughts pretty much every night, partly because of medications making me feel stoned or spun out and partly because I’m still getting occasional extreme mood swings which can make me really impulsive.  But they can’t do much atm- they’re not admitting any new inpatients because of the pandemic and all they can really suggest is to keep a mood diary, have a crisis plan and take lorazepam which I’m doing but it still doesn’t feel safe a lot of the time.  But I’m still trying!!

The last issue I’m going to talk about here is the idea of feeling chaotic, out of control and scared which for me, is a big trigger for eating disordered behaviour which I’m trying SO HARD not to fall back into atm.  It’s taken 20 years and some v direct honesty from a couple of friends to get into a ‘healthy’ eating routine and I really, really don’t want to lose that.  So I’ve literally made a timetable to structure the day around a ‘school day’ with set mealtimes which I have to stick to.  And it feels so much safer because it’s not my ‘choice’ and apart from a couple of really horrible, chaotic days, I’ve pretty much managed to stick to it.  Will share it here in case anyone else finds it useful ūüôā

 

But even though the world is chaos and scary, there have weirdly been some positive effects!  Which I’m trying to focus on and see as proof that things can change…

  1. Thanks to necessity for medical appointments, helplines and crisis calls, I can actually make and receive phone calls now without getting panicky!  Which is a HUGE thing for me.
  2. I have several friends who are amazing and some of whom put up with sometimes ridiculous texts or calls.  Several being a BIG change because before I’ve only managed to keep one or two friends at a time and now I have a few!  And I’m really trying to believe they won’t forget I exist just because I haven’t contacted them in a few days…
  3. Social media is not all paranoia and anxiety and with only close friends, can be an absolute lifeline.
  4. I can go to the supermarket only twice a week, buy more food at once without being convinced everyone will think I’m a greedy, lazy bitch and actually keep the food in the house without bingeing on all of it!!  Which, as someone who used to only be able to buy a day’s food at once, is a BIG change.  Mostly helped by my equally intense fear of germs meaning that I’m genuinely scared to go to the supermarket but I’m still taking it as a positive!
  5. I now wash my hands in a normalish way.  Which again is a big thing- I used to have to use 2-4 pumps of handwash and sometimes 2-4 more depending on if they ‘count’, and careful not to accidentally hit 13 overall so sometimes even more but now, thanks to restrictions on how much handwash you can buy, it’s 2 pumps ONLY and they both necessarily count.  And it’s amazing how much less anxiety I have now about washing my hands!
  6. I bought a weighted blanket to help with anxiety and needing a physical ‘hug’, and I’ve never slept so deeply in my life.  OK, it’s still not for very long and not always at night but it’s seriously amazing!
  7. Focussing on Jedi living is actually a lifesaver atm.  I won’t go into it too much now because I’m planning a whole post on it later on but there’s something really grounding about connecting with a Force greater than yourself and trying to really focus on quieting your mind and letting go of attachments and fear.  I know it might sound a bit weird but it honestly does really help.
  8. I have never spoken to my little cousins on FaceTime so much in my life (or ever, in fact)!  They’re all off school and bored atm and it’s so nice to connect with them, watch them play lego/do crafts/just hang out.  Living in England while they’re in Scotland means that sometimes I miss out on my little cousins growing up and it’s so nice to connect with them properly now.  Feels like I’m actually in Scotland with them!

Anyway, this post is a lot longer than I’d intended so will leave it here ūüôā REALLY hope everyone is managing OK and sending lots of hugs to anyone else self isolating on their own.  It really is hard and can feel like it’s never going to end but IT WILL and reach out to as many people as you can ‚̧

(More) thoughts about ED recovery

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

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

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

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

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

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

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

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

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

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

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

10 in 10 Day Five- halfway through!!

Five marathons down and halfway through!! ¬†Today was a bit of a weird one- after yesterday, I didn’t sleep brilliantly last night and wasn’t in a great mood when I woke up but I noticed on Facebook that it was a purple medal day and purple’s my favourite colour so made an effort to wear all purple (not too difficult given that 90% of my stuff is purple anyway plus I have purple hair and nails!) which definitely helped put me in a more positive frame of mind. ¬†Wish everything was that simple!

I hadn’t had much to eat last night because of feeling rubbish and I was genuinely hungry this morning so I added cornflakes to my porridge (weird I know but it doesn’t seem as much as having extra porridge) and had some hot soya milk as well as coffee. ¬†I actually felt reasonably with it at the start of the run which was nice considering how horrible the last two days have been and once the run started, I seemed to have a surprising amount of energy.

The first couple of laps went pretty quickly; I was listening to Pink Floyd’s Dark Side of the Moon and The Division Bell, and the extra food for breakfast really did seem to have helped. ¬†By lap three, my mood had started to drop again and was having a lot of pretty unhelpful thoughts about eating extra and not needing it, not trying hard enough etc but I kept running and tried to build up enough time so that I could ease off in the second half. ¬†I stuck to the cereal bar strategy again which *touch wood* seems to be working OK, and ran most of the race pretty much on autopilot.

The weirdest thing was that I didn’t really feel sore or overly exhausted which is strange considering it’s day five and days three and four were really tough. ¬†Physically, I felt the best I have done all week although mentally my brain was all over the place and that was harder to manage. ¬†By lap six, I’d switched to Harry Potter audiobooks which is my go-to brain numbing strategy and that really seemed to help. ¬†I walked most of the last two laps but I’d got enough time to be able to, and I was surprised at how the run seemed relatively OK compared to the last couple of days. ¬†Big relief and really hoping it lasts!!

It was really, really hot and I realised after the run how dehydrated I must have been- mega headache and felt so thirsty even though I’d been drinking squash all day so I walked to Morrisons and got some diet Irn Bru which was the most amazing thing ever!! Had a salad and cooked chicken for tea which didn’t seem like too much for once (I hate admitting it but I am actually starting to get hungry) and some melon which was equally amazing. ¬†Am absolutely exhausted now though and a bit over-emotional so planning an early night and hopefully sleep… ¬†Five down, five to go!

Day Three of the 10 in 10

Today was TOUGH. ¬†Managed another marathon but I’m really not sure how many more I’m going to be able to do. ¬†Weirdly it wasn’t the running itself that was the problem though- I woke up feeling rubbish and tired (no idea why; I’d slept OK) and found it really hard just to get my running stuff on, eat porridge and even get to the Cyclopark. ¬†It was like I had no motivation at all and really couldn’t be bothered which was weird because it was sunny and everyone was being so lovely and supportive.

I can’t remember much of the start of the run but it must have gone OK, the sun was shining and there was a breeze so not too hot, and I was listening to a mix of Bowie live music. ¬†On either the first or second lap (can’t remember!), I caught up with the guy I’ve run with on and off for the last few days and ran the next couple of laps with him which was really helpful motivation-wise and to keep pace up so that I didn’t have to stress for the last half of the marathon. ¬†After lap four, I was really starting to struggle so he went ahead and I plugged back into Bowie in an attempt to keep moving.

The path kept spinning and I felt like I was literally forcing my body to move which wasn’t a lot of fun. ¬†I was in a bit of a negative mindset- really not sure the runs are worth the extra stress of fuelling and trying to keep distracted from brain shit, but I kept reminding myself that it was definitely better than feeling rubbish at home which would be the alternative and at least while I was running, I was doing something relatively positive even if it didn’t feel like it. ¬†I’m finding the food side of running really difficult though :/ a few people pointed out today that a few grapes each lap aren’t enough to fuel a marathon but I’d given up with the cereal bar strategy for today because I was feeling so shit about it, and it’s bloody hard having to actually eat real food every evening to fuel for the next day. ¬†Feeling really rubbish about the whole thing atm and no idea how I’m going to manage another week of it. ¬†Total mindfuck!

During lap seven, a lovely woman I’ve run with before caught up with me and it really helped chatting to her to distract from brain crap and just to catch up. ¬†The end of the lap was a bit eventful- sudden rain and hailstorm out of nowhere and got absolutely soaked and bloody freezing!! ¬†I was v v close to pulling out at the end of that lap because I was so cold but one of my awesome running friends who’d finished lent me his waterproof and went out again for the last lap- thanks to people who literally forced me back out!! ¬†Thankfully the hail eased off and the sun came back out so had dried off a bit by the end of the run.

I’m still feeling a bit weird and rubbish about the whole thing :/ I know I should be happy to have run another marathon (and I’m sure on one level I am) and it’s so nice to people to keep being so encouraging but I’m also feeling really horrible and shit about everything at the same time which really isn’t helping. ¬†I know I can’t not eat and expect to be able to run marathons every day but it’s so hard to know what’s the right amount and what foods to eat. ¬†The woman I ran with today gave me some dextrose tablets to try tomorrow (only 12 calories each and they have electrolytes in them too) so will give that a go if I start to feel dizzy or spaced out, and keep going with porridge in the morning and something for tea.

Today I bought a salad from Morrisons for tea and added cooked chicken to it for protein which I think is OK, but the really horrible thing about eating more regularly is that you start to get hungry and I’m already finding it hard not to eat all my cereal bars in one go! ¬†Feeling really greedy and yucky about it (don’t usually get hungry and it’s a headfuck feeling) but I know that marathons need fuel and protein helps to repair muscles. ¬†Just wish it didn’t also feel like I’m going to have put on about ten stone by next week! ¬†So bloody confusing but determined to keep trying with it…

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…

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

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 ‚̧