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…

What I learned from running 10 marathons in 10 days

Sorry I didn’t post last night; was completely exhausted both physically and emotionally but finished the 10 in 10!! ¬†Honestly one of the hardest things I have ever done- I was just about prepared for it physically but really wasn’t ready for the mental challenge of getting to the startline every day for another marathon, keeping going when you’re too hot, everything hurts and you’re exhausted or (especially) the emotional overload every night after the race and occasionally during it. ¬†But DONE ūüėÄ probably not something I’ll ever attempt again but so glad I did it, really needed the challenge and good to have achieved at least one positive thing this summer.

The emotional side of the running was definitely the hardest bit. ¬†Usually I run ultras where you have 24+ hours of just zoning out and running at your own pace which is totally different to running marathons. ¬†Plus there are so many more PEOPLE which I know is good and motivating but sometimes I really just wanted to be on my own which was impossible on a lapped marathon. ¬†The people were amazing though- everyone was so lovely and encouraging and without them, I probably wouldn’t have got past day two but it’s definitely a different type of running to what I’m used to. ¬†There were a few days when I genuinely couldn’t stop crying and it’s hard when there are people all around you so spent a lot of time crying in bushes or anywhere people couldn’t see, and I hadn’t realised how emotional marathon running can be. ¬†I think it’s because you’re having to push physically all the time to meet the cut off times and you can’t zone out in the same way as during ultras so you’ve got too much thinking time and my brain was going to some pretty horrible places without enough distraction. ¬†Definitely not the kind of running I’d want to keep doing but definitely good for a challenge!

The other big challenge for me was being away for ten days on my own and managing the time in between marathons. ¬†It was really, really hard and had some pretty massive mood crashes between the runs but I kept reminding myself that it was still better than how I’ve been feeling at home recently and it was a massive challenge. ¬†I actually made some (for me) pretty sensible decisions- when I was having a really bad night and constant suicidal thoughts, I called a mental health helpline who contacted the psychiatrist I’m seeing at the moment so she called me, and I gave my medication to a running friend to look after so I couldn’t overdose on it which is definitely more sensible than I’d usually be. ¬†But I really, really wanted to complete the 10 in 10 which would be pretty impossible if I did anything ridiculous or stupid and my whole focus last week was getting through the challenge.

The other unexpected challenge was the heat- it was bloody hot especially over the last few days!! ¬†Running a dry, exposed course in 33 degree heat with no breeze is bloody tough and definitely made the challenge harder. ¬†Even though I was dipping my cap in cold water every lap, drinking as much water and electrolytes as I could and wearing factor 50 kids suncream, I was massively overheated all the time which really wasn’t fun. ¬†I’ve lost count of the amount of times I ran into the petrol station near the course to buy some diet Coke and even ate a ridiculous amount of ice poles and ice lollies which I’d never normally eat because of the sugar and additives but it was so, so needed and was desperate for any way to cool down. ¬†Never want to see an ice lolly again EVER and feeling a bit shit about how many I’ve eaten over the last ten days but it did seem to help stop the path from spinning so much.

Anyway, back to reality today :/ still on a bit of a high and trying to make it last as long as possible before the inevitable mood crash that people keep warning me about. ¬†So I’m trying to get as much washing, blog writing and productiveness done as a I can now! ¬†Felt a bit weird this morning not going to the Cyclopark for another run but definitely nice not to have to force down porridge with cornflakes and cereal bars when I’m already feeling sick or cover myself in green gunky suncream (because I hate white things) and feel yucky and greasy all day. ¬†But it is a bit lonely without the amazingness of awesome SVN people and how bloody incredible and supportive you all are- THANK YOU so so much!!

Been a bit of an epic and exhausting week, and actually learned some stuff! ¬†SO…

  1. The human body is AMAZING and is capable of incredible things.  Especially if you feed it.
  2. David Bowie is a lifesaver and playing Rock ‘n’ Roll Suicide will make you feel alive even when you really don’t feel like it physically or mentally.
  3. Use the people around you- they are amazing. ¬†I’ve met so many awesome and inspiring people this week and thank you all so much!
  4. Ice lollies are GOOD and can save your race.
  5. Just keep moving. ¬†Even if you’re walking, you’re still getting closer to the finish line.
  6. It is possible to run, cry and breathe all at the same time and is actually kind of therapeutic.
  7. Sleep can completely reset your mind and is really, really important.  Even if you need Zopiclone to get it!
  8. You are capable of way, way more than you think you are and half the challenge is just starting it.
  9. Food is fuel and without it, you can’t even get past the first lap.
  10. I like icing even if I don’t like cake and it’s a bloody good energy boost!
  11. Whole albums are better than playlists because you actually feel like you’ve accomplished something when you run through a whole sequence of albums.
  12. Don’t listen to emotional audiobooks while running; you will cry uncontrollably.
  13. Listen to your body.  If you need to slow down, then slow down and enjoy the scenery.  Even the bloody rabbit bridge for the 160th time!!  Pushing through pain is never a good idea.
  14. Exhaustion is more mental than physical- your body can do pretty much anything, it’s your brain you need to convince.
  15. Mental and emotional exhaustion are two separate things. ¬†You can push through mental exhaustion and feel accomplished by the end; never try to force through emotional exhaustion because you’ll spend the evening feeling rubbish, overwhelmed and not safe.
  16. A text message from a friend can literally save your day.
  17. Running is a bubble away from real life where you’re not really alive or dead and neither really matters. ¬†It’s like being in an alternate universe where all that matters is that particular lap and that’s a pretty amazing escape.
  18. I am definitely more of an ultra person than a marathon runner!  But it is pretty cool to have ten rainbow coloured medals.
  19. Your worth isn’t defined by how many marathons you’ve run or how far you can push yourself. ¬†Everyone has their own individual limits and that’s OK; it’s working within those limits and feeling OK about yourself that matters.
  20. People are amazing. ¬†Even if you’re feeling shit and don’t really want to interact with anyone, they’re still there being encouraging and so lovely and it’s amazing watching people achieve incredible things.

Just want to say THANK YOU so so much to everyone for being so amazing and supportive this week, both in person and online and I really, really appreciate it. ¬†Genuinely didn’t think I’d manage even one marathon and I probably wouldn’t have without the support. ¬†Been a v v surreal and exhausting week physically, mentally and emotionally but also ironically one of the most ‘sane’ weeks I’ve had in months and really ¬†want to channel that!

10 in 10 Day Seven

Day seven of ten marathons in ten days and officially been running marathons for a week! ¬†Mentally I was feeling better today than I have done all week which was a relief and definitely better than yesterday. ¬†I added cornflakes to my porridge again for extra energy which felt OK especially as I’ve been really, really hungry in the mornings when I wake up although I’m really hoping it doesn’t mean that my body’s getting used to too much food which is going to be hard to manage next week. ¬†But for the moment, I just want to get through the runs so trying not to think about it too much.

The first few laps went OK- was listening to Pink Floyd’s Dark Side of the Moon and The Division Bell which are two of my favourite albums, and it was nice to run and zone out a bit. ¬†It was really hot though which got worse as the run went on. ¬†By lap three, I was really feeling the heat and even though I was drinking lots of squash, I was still really thirsty. ¬†There were ice poles at the aid station which were amazing and it was so hot I wasn’t even bothered about the fact that they probably weren’t sugar free which is a massive thing for me since I’d never usually eat sugar but it was so bloody hot! ¬†I dipped my cap in water every lap which helped a bit but was really struggling with the heat.

After lap six, I bought a diet Coke from the petrol station which helped a bit but found the last couple of laps really, really tough. ¬†I was mostly walking by then because I was feeling dizzy and nauseous and the path kept spinning around me, and I really didn’t feel great. ¬†Luckily a running friend caught up with me on the last lap and I walked the rest with her which was really helpful because I was a bit worried I was going to pass out. ¬†Even when I got back after the race, the room was still spinning and it took a while (and a lot of diet Coke and squash) to start to feel a bit more normal. ¬†So hard running in the heat!

After the race, lots of people from the 10 in 10 went out for a meal at Wagamama which was another big positive for me- I don’t really ‘do’ eating out or in front of people but it was actually OK and had a really nice salad which was definitely needed, especially the salt! ¬†Off to bed now, totally exhausted and hopefully sleep before tomorrow… ¬†Three more attempts to go!!

10 in 10 Day Four- bad day :(

Just a short post today, sorry, found it really hard again and haven’t got the energy to go into a lot of detail. Woke up feeling rubbish which didn’t help then really struggled to get going. First few laps were OK, plugged into Bowie and tried to keep moving but felt tired and drained really quickly and still feeling rubbish.

From lap five, I felt really horrible and kept wanting to cry for no particular reason. Had a few ‘cry breaks’ and seriously considered quitting but a running friend caught up with me during lap six and semi-dragged me round in time for the cut off. Laps seven and eight were mostly walking and felt really horrible, both mentally and physically drained, dizzy and nauseous.

After the race, I felt really horrible and had a total mood crash which wasn’t ideal because the psychiatrist I’m seeing at the moment chose that minute to call and see how things are going (not good!). So I’ve got an appointment with her as soon as I finish the runs :/ need to get my brain in gear by then. But this evening, a lovely running friend invited me out for a drink which was really nice of her and really needed to get out for the evening, even with crisis numbers from the psychiatrist I wasn’t feeling great so good to not be on my own. Still feeling rubbish and v tearful though :/ really hope tomorrow goes better!! Every day is a new day…

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…

10 in 10 Day Two!

Marathon number two complete!! ¬†Honestly didn’t think I was going to manage even one so I still can’t quite believe I’ve run two so far, and even if I don’t manage another full one all week I’m mega happy with two! ¬†Today was SO MUCH better than yesterday ūüôā I’d slept properly last night which really made a difference (ear plugs were definitely a good idea) and had porridge before the run, and I think the combination really, really helped both with how I was feeling in general and with the running itself.

I was a bit nervous about running again so I decided to wear my Hope24 T-shirt for good luck and to try to channel positive Hope vibes (Hope24 is my favourite ever race and have written blog posts about it before-¬†Hope24: a 24 hour run in Newnham Park, Devon¬†and¬†Hope24 2017). ¬†It kind of worked and was feeling a lot more positive than I have done recently which must have showed because several people commented that I seemed better than yesterday. ¬†I’m focusing on one day at a time so just wanted to get through today, and I was really nervous about not making the cut off time for a marathon but once you’re at the start line and people are so lovely, it definitely helps you to feel less nervous. ¬†I’m really lucky to know so many awesome running friends who are amazingly encouraging and supportive which really, really helped- you know who you are and THANK YOU!!

The first lap felt OK; I wasn’t running particularly fast but I was running which was a definite improvement on yesterday, and my body didn’t feel as much like lead as it had done. ¬†It started off warm and sunny which was nice, not as oppressively hot as yesterday and there was a bit of a breeze then it started to cloud over. ¬†I caught up with the friend who’d forced me to run a bit faster yesterday and he was amazing at motivating me and getting me to actually stick with the running which was definitely needed. ¬†Anyone who knows Nick will know that he’s a pretty good person to run with when you’re really not feeling it- he doesn’t hold back and is v direct when you’re not trying hard enough or getting too distracted, and he’s definitely experienced enough at marathons to know what he’s talking about (he’s the current world record holder for most amount of marathons in a year and runs them pretty much every day; often more than one in a day- check out his Facebook page¬†Chasing World Records) and he basically dragged me round the first four laps which meant I had enough time left to “fuck around” (Nick’s words) for the last few laps which was a relief because I was completely exhausted by that point. ¬†But thanks to him, I stuck to the path instead of veering off to the sides, didn’t get *too* distracted by a cat wandering across the path and actually made up some time so thanks Nick!

Laps three and four weren’t a lot of fun :/ the clouds turned to rain and got absolutely soaked. ¬†I’d left my waterproof in the car which wasn’t brilliantly organised of me and had to keep running just to stay warm. ¬†The not-helpful part of my brain kept reminding me that you burn more calories when you’re trying to stay warm so it wasn’t a bad thing; Nick also reminded me that if you’re burning more calories then you need to consume more to finish the race and my brain went into a bit of a tailspin at that point! ¬†But he was right- you can’t run ten marathons in ten days while not eating enough even if you’re not exercising, and I stuck to the same ‘cereal bar every two laps’ strategy that I’d used yesterday. ¬†At the time, it was easier because I was flagging energy-wise and I knew I needed some fuel but finding it harder to justify now especially thinking of all the extra calories I’m going to have eaten by the time I finish the runs. ¬†Found it hard to eat tea tonight- most places are closed on Sundays so I went to Subway and got a chicken salad but it was MASSIVE and felt a bit nauseous eating it. ¬†I didn’t manage the porridge last night but I’ve got some soya milk which I’m going to try to drink before going to bed so I’ve got a bit more fuel for tomorrow. ¬†Marathons are so much harder to fuel than ultras!

The rain eased off during lap five which was a relief and it was nice to start to dry off a bit. ¬†I’d had some caffeine (via paracetamol) after lap four which really helped too and I slowed down a bit, and started to relax into the run a bit more. ¬†I was listening to David Bowie’s Lazarus album which I love (the cast recording so it’s like a story) and the scenery was really nice in the sun. ¬†Then about halfway round the lap, something amazing happened and I started to feel like I was actually real and with it for the first time in ages! ¬†No idea why or what caused it but it was a massive relief- I’ve felt like an emotionally dead zombie pretty much constantly for the last few weeks and even though I still feel rubbish, I’m definitely feeling a lot less dissociated than I have been which is a big shift. ¬†Really hoping it wasn’t just a one-off!

During lap six, I started running with a lovely woman who I hadn’t met before and we spent the last couple of laps running/walking and chatting which was really nice. ¬†Finished well within the cut off time which was a big relief and was great to see more running friends at the end. ¬†Definitely a better day than yesterday and so happy to have run another marathon! ¬†Shower and bed time now ready for another go tomorrow, fingers crossed it’ll be another positive one…

10 marathons in 10 days…day one!

A while ago, I thought it would be a good challenge to try to run ten marathons in ten days during the summer holidays so I signed up and scarily it’s come round quicker than I thought! ¬†I’ve never attempted 10 in 10 before so was a bit nervous at the time but it seemed like a good idea as I’ve done 7 in 7 before so it seemed like a logical step. ¬†Which it would be if I was in the same mindset and physical condition as I was when I did the 7 in 7 a few years ago; unfortunately I’m really not at the moment which is adding an extra challenge on top of the actual running.

I haven’t been feeling great recently and have spent most of the summer holidays from school either lying on my bed feeling rubbish, trying to motivate to do something productive (and usually failing), watching Bad Girls on repeat or walking up and down the canal for hours just to get out the house so the idea of running a marathon every day for ten days seemed a bit overwhelming but I’m looking at it one day at a time and just focussing on getting through that. ¬†Really is a big challenge and I really want to complete it- my running’s been rubbish recently and hadn’t managed a full marathon in over a month, and I want to prove to myself that I can still do it. ¬†The other bonus is that the runs are in Kent which means being away for ten days- I’ve had to move back in with my parents for the moment which isn’t the best situation but not been feeling v safe on my own, and ten days away is definitely needed!!

Anyway, back to the running! ¬†The whole event is really well organised- it’s eight laps of a cyclopark (so you can’t get lost) and starts at 9am every morning. ¬†I was really nervous when I got there, partly because of the running but also v tired because I hadn’t had much sleep (staying in a v noisy B+B and it was freezing last night- had to double over the duvet to make it extra thick and wore running clothes under my pyjamas so didn’t really sleep much even with Zopiclone and piriton) but it was so nice to see and catch up with running friends before the start. ¬†Then the run started and everyone ran at their own pace- I’m mega slow atm so was running on my own for most of it.

It was HARD. ¬†The first couple of laps especially- I felt really stiff and heavy, like I was forcing my body to move and the heat didn’t help. ¬†I don’t usually sweat but was literally dripping and must have been really dehydrated because I didn’t need to use the toilet all day (it’s nearly 8pm now and still haven’t needed it) even though I was drinking half a litre of water every lap and have had soup and two bottles of diet Coke since I finished. ¬†No idea what was going on and really didn’t like it! ¬†I realised quite quickly that lack of food wasn’t helping either- my diet’s been rubbish over the last few weeks, lots of bingeing (on fruit) but been feeling v nauseous and shaky most of the time so haven’t actually ‘eaten’ much outside of bingeing which seems to be impacting on running. ¬†So I had a cereal bar after two laps which helped a bit, and managed to pick up enough speed to count as maybe jogging rather than semi-crawling round.

During lap three, a friend I’ve run with a few times before caught up with me and made me run a bit quicker which definitely helped the overall time- thank you!! ¬†Had two laps of semi-running with him before he went off ahead, which meant I was closer to the cut off time although still pushing it. ¬†Energy levels were dropping again so I had another cereal bar after four laps, and another at six. ¬†Trying to justify it by the fact that my watch was telling me I burned 3000 calories during the run so an extra 100 every other lap shouldn’t make too much difference but I’m still feeling really guilty about it and like I should have just got on with it. ¬†But it’s a really hard balance :/ I really do want to finish the runs and need the energy to do it but I’m terrified of gaining even more weight by being greedy and eating if I don’t need it- so bloody complicated!! ¬†Have written about this before (Running your way to body tolerance‚Ķ¬†and¬†Thoughts about ED recovery) and it still messes with my mind. ¬†Sometimes I wish I was still a lazy teenager who only exercised in order to burn calories instead of wanting the actual exercise part!

The last few laps were horrible- still really hot and genuinely seemed to have run out of energy. ¬†I only just made the cut off time for the marathon which was a relief to make it but bloody scary considering it’s only day one and have got nine more attempts to go! ¬†Really need to get into the right mindset and focus :/ no idea how though. ¬†I think actually getting there every day and taking part is as much of a challenge as the runs themselves atm- I’m literally having to force myself to move and actually do something but it’s definitely better than being at home feeling even more rubbish which is my main motivation. ¬†Even if I don’t manage marathons every day, it’s still a positive just to run for six hours and more than I thought I’d be able to. ¬†Wish the bloody endorphins would kick in though! ¬†Sorry to anyone who had to deal with me today and thank you to everyone who was so encouraging- promise I’ll try to be less negative for the rest of the week. ¬†You know you must look like shit when three separate people ask if you’re on the right combination of medications…!

Back at the B+B now, have had soup and going to try to have some porridge before I go to bed so I’ve *hopefully* got a bit more energy for the morning. ¬†Still feeling shit about the cereal bars though so will see how it goes :/ a couple of people commented today that I need to eat to fuel the marathons and I’m trying to see it in the context of other people- lots of people running were eating sweets or crisps every lap and they didn’t look any different afterwards (and still looked way thinner than I do atm!), and they needed it for the fuel. ¬†Will definitely have porridge tomorrow morning and see if it makes any difference. ¬†Bought some earplugs after the run and really hoping for a better night’s sleep tonight! ¬†Fingers crossed tomorrow will be a bit easier…

Another weirdly positive psychiatrist appointment!

Sorry if this blog post doesn’t make a lot of sense- am currently feeling overwhelmed and totally exhausted but wanted to try to get some thoughts down before it all turns to mush! ¬†I had an assessment today at the eating disorder service where I was inpatient from 2005-2007 and outpatient until 2010 which I was really, really nervous about beforehand but actually went surprisingly well. ¬†Trying to get my brain into some sort of sense atm so if it seems a bit jumbled, I’m really sorry! ¬†Haven’t been feeling great over the last few weeks and have had a lot of negatives thoughts/urges which have been really hard not to act on and my brain is pretty much total fuzz most of the time.

Was so, so nervous before the assessment- apart from visiting a friend a few months ago (which was also really weird and I found hard to deal with), I haven’t been back to the unit for nearly 10 years and it felt really strange going there this morning. ¬†I was also extra-nervous because I’ve had a lot of contact with doctors over the last couple of weeks ¬†because of feeling rubbish and spent a night in A+E last week which the doctor said he would pass on to the psychiatrist so I was a bit worried about what sort of impression I was going to make.

I decided to walk into town (about an hour and a half) in the hope that I’d calm down a bit before getting there but was still really shaky and feeling sick by the time I got there. ¬†It took three loops of the road to actually get to the door and my brain was completely fuzzy by then- when I was filling in the forms in the waiting room, I kept getting spellings wrong including my own name! ¬†Luckily I didn’t have to wait too long and the psychiatrist took me to a room which I’d thankfully not been in before because I think that would have been way too weird.

It was a new psychiatrist who I hadn’t seen before but I’d heard about him from a friend who also sees him, and he was really nice. ¬†He had my notes from last time which was a big relief because I didn’t have to start totally from scratch, and he actually seemed to listen when I was answering the questions. ¬†The initial assessment took nearly two hours then had to go for ECG and blood tests, then back for physical obs and a chat about the outcome of the assessment- LONG day and was absolutely exhausted afterwards but hopefully worth it.

The assessment was really, really thorough and so different to ED assessments I’ve had before. ¬†He didn’t give me any screening questionnaires or quizzes to fill it (which was a definite relief because I HATE them and usually end up annotating them so I don’t come across as completely hopeless) and just asked lots of questions. ¬†It wasn’t all about ED thoughts/behaviours either which was another big relief because most of what I’ve been struggling with recently is more mood-related and negative urges, and he kind of linked everything together which again was really positive compared to the really frustrating ‘boxes’ approach that I’ve experienced a million times before where ED doctors only talk about ED symptoms and other psychiatrists won’t talk about ED-related issues and usually I’d just get told that it’s all autism-related anyway. ¬†But it wasn’t like that at all and he even seemed to ‘get’ what I was trying to say when I couldn’t find the right words to describe it!

ECG and blood tests went OK- my veins are rubbish so as usual, it took several tries, butterfly needles and dizziness before actually getting any blood but for once I didn’t faint which was a big relief! ¬†Then back over the the unit for physical obs. ¬†The results of the ECG were slightly abnormal so I have to go back for a ‘heart echo’ and have 24 hours wearing a heart strap which I’m a bit nervous about but my ECGs are often a bit weird so wasn’t too worried about it. ¬†Physical obs were fine; I get a bit nervous about people being that close to my body and it must have showed because the doctor started talking about random stuff to distract me and it turns out he used to watch Bad Girls which is the TV show I’ve been obsessed with since I was 13 and is currently the only thing that seems to work to distract from negative urges!

After the physical checks, I had to see the psychiatrist who assessed me along with the consultant to discuss the outcomes. ¬†Looking at it at first, it wasn’t anything earth-shatteringly different from what I’ve had before but the wording IS different which completely changes my treatment plan which is kind of a big deal. ¬†He gave me a formal diagnosis of borderline personality disorder and atypical anorexia, and said that he is going to refer me to a dietician and for dialectical behaviour therapy. ¬†The main difference is that he thinks the ED is part of the “bigger picture” of BPD whereas before, ED and autism have always been the ‘main issues’. ¬†I’ve had BPD mentioned several times before (most recently at another relatively positive psychiatrist assessment:¬†Positive psychiatrist appointments actually exist!!) but always as ‘traits’ instead of a formal diagnosis. ¬†Having an diagnosis of it as the primary issue means that I can actually get specialised treatment for it which is a MASSIVE relief because for me, it’s the extreme moods, fixations on people, paranoia and suicidal thoughts/urges which are the hardest to deal with and I really do want help to learn to manage them.

I’m still trying to process it properly and am feeling v overwhelmed at the moment- overall, it took nearly 5 hours and was completely exhausted afterwards, but feeling strangely positive about it and especially about being able to access dietician support and DBT. ¬†Even though my weight’s ‘normal’ thanks to medication side effects, I still find it hard to vary my diet outside of porridge and soup, binge on fruit most nights and can’t eat in front of people or outside of ‘set’ times which I really, really want to work on. ¬†I’ve been teaching myself DBT skills for years now but it’s really hard to put in into practice on your own and I’m really hoping that being able to access it properly will help.

I fell asleep as soon as I got in from the assessment because I was so exhausted after it but this evening has been the first time in weeks that I’ve actually felt motivated enough to do something other than watch Bad Girls (again) or just lie on my bed feeling rubbish which has been most of my summer holidays so far. ¬†So I’ve actually written a whole blog post (!), semi-cleaned my kitchen and going to try to stay up till at least 10pm instead of taking sleeping tablets so I can go to bed at 8pm which is what I’ve been doing over the last few weeks because evenings have been horrible and so hard to deal with. ¬†Trying to keep hold of the positive feelings and really hoping it’ll last…!