Hope 24 2021

I’m so sorry I haven’t blogged in ages! Been having a lot of sleep and energy issues recently and sleeping more than I’m awake, and haven’t had the motivation to do much writing. I’ve started a few posts and not finished them, and I really am going to try to keep up with blogging more…

Last weekend was Hope24, which is my favourite running event of the year. It takes place in Newnham Park near Plymouth and it’s all trail running, across a field and through woods and it’s so scenic. Every lap is five miles and you can set a tent up near the start/finish line to keep food etc, or to have a sleep. The atmosphere is amazing and the organisers are incredible. Such an awesome event!

I was a bit nervous going into the run because I haven’t been running much recently as I’ve been sleeping so much and had no energy. I’d also run London to Brighton a few weeks ago which was horrible- so, so hard both mentally and physically and I wasn’t sure another ultramarathon was a good idea. But I love Hope and didn’t want to miss my favourite race so I went ahead with it. I made sure I had lots of sleep the night before and stocked up on electrolyte tablets with caffeine to try to stay awake during the run!

The first lap wasn’t too eventful but was HARD. I genuinely think my body has forgotten how to run- even when I try to make running movements, it’s like forcing my body through sludge and I’m slower than if I were walking. At the end of the first lap, a guy I know asked why I wasn’t running and my reply was “I am!”; my running speed was so, so slow and I couldn’t go any faster. London to Brighton was the same and it’s so frustrating to consistently get overtaken by walkers. But I was determined to run as much as I could however slowly I was going.

Mentally, the race was really, really tough. I’m having a lot of issues with obsessive and distressing thoughts at the moment and it was really hard to distract from them. I tried everything I could think of- DBT skills like observing and describing my surroundings, turning the mind, radical acceptance (which I still can’t get my head around and which I’m planning a blog post about), half smiling, thought blocking, imagining thoughts on a conveyor belt, thinking of thoughts as firings of the brain… I even tried listening to Blackadder in the hope that laughing would help! But nothing seemed to make any difference, and it got worse as the race went on.

The scenery was amazing though and describing it (out loud) did help to distract a bit even though the thoughts came back as soon as I stopped. The route was so nice- up a hill and through some trees, over a field and up another hill, a long downhill through the woods then up the other side. No bluebells this time of year but there were foxgloves and thistles.

After 20 miles, I stopped for a coffee break as well as the caffeine tablets because I was starting to get really tired by that point. Had a cereal bar and a ten minute rest, then back to the running. I had a ‘photography lap’ where I took some more photos then it started to rain so I had to put my phone away.

By the evening, I was completely exhausted and finding the obsessive thoughts really, really hard to manage. I was also feeling upset and angry which didn’t help, and having a lot of negative urges. It had also started to rain which got heavier as the night went on, and by midnight the trail had turned to rivers of mud and it was really hard to run without falling over, especially when you’re already totally distracted and feeling horrible. At about 1am, I stopped to get more coffee and some food, and waited for the rain to ease off which ended up being two hours later by which time I’d tried to quit then asked for my timing chip back!

At 3am, the rain was more drizzly than deluge so I headed back out again. To be honest, I can’t remember much of the night apart from feeling really upset, crying a lot and lots of obsessive thoughts. When it got light, the rain was on and off which, along with the light, helped a bit but by 7am I couldn’t deal with the thoughts any more and decided to stop. It was the right decision, I think- I was so tired I couldn’t see straight and things were moving that shouldn’t be, and I felt horrible. So I handed my timing chip in and got my medal.

Once I got back to the B+B, I slept all day until 6.30pm, briefly tried to watch the F1 but fell asleep partway through and slept till 6am the next morning. Drove home and had DBT, then fell asleep again for the rest of the day! So I think it really was the right decision to stop. I feel rubbish about it though :/ it’s the first time I haven’t finished a 24 hour race and I feel like I should have been able to complete it. But I’ve realised that the people who keep telling me that I’m not well enough for ultrarunning are right- physically I don’t have the energy and mentally I can’t deal with the extended thinking time. But it’s yet another reason to fully commit to DBT and trying to recover!

Thoughts about identity

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

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

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

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

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!

Day nine!! Only one more attempt left…

Just a quick post again today because I am KNACKERED ūüėī nine marathons down and only one more to go!! Today was super tough; 32 degrees heat and no shade so really hard running. Lots of people dropped down to half marathon and was really, really tempted to stop at a half too but it’s so close to 10 in 10 now and I really do want to try as hard as I can to achieve it.

I think my brain must be turning to mush because I can’t remember much of the actual running again :/ I know it was HOT and I ate way too many ice lollies from the aid station which I’m feeling a bit shitty about now but really did help both with energy and trying to cool down. I felt like I was literally roasting for most of the run though and even dipping my hat into water every lap didn’t help much. Drank lots of water and electrolytes but still so so hot.

But amazingly finished it (just!!) and only one more attempt to go… Feeling like it might actually be achievable?! Can’t process it properly and am completely drained in every possible way but will see how tomorrow goes…

Day Eight of the 10 in 10- only two days to go!!

Hardest day so far :/ SO BLOODY HOT!! ¬†Wasn’t in the best frame of mind when the run started- wasn’t feeling great last night and spent most of it in an over-emotional crying phase which I think is kind of expected after seven marathons but didn’t really help with the rest and recovery aspect. ¬†Although as a friend pointed out today, if you choose to run ten marathons in a row, you’re going to be exhausted and emotional so it’s kind of my own fault! ¬†Can’t wait till it’s over though; I’ve been a lot more sensible than usual with keeping safe but also feeling kind of trapped and claustrophobic, and looking forward to being back at home with my cat.

OMG it was hot today.  Really, really hot, exposed course and no shade so really tough to run in.  It was so hot that I was eating ice lollies again without caring about the calories or sugar content, and drinking as much water with electrolytes as I could.  I ran as much of the first half as I could but really struggled in the second half and seriously considered stopping at six laps but people were being so encouraging that I carried on.  Only just made the cut off time though which was a bit stressful.

I can’t really remember much of the run continuously so this is going to be a bit of a short and random post, sorry! ¬†I know at some point someone gave me a diet Coke which really helped both with hydration and energy; the path was spinning a lot of the time and two people gave me salt and electrolyte tablets which probably stopped me from passing out which felt way too possible, and it was nice to have some company on the last couple of laps when I really didn’t feel capable of walking let alone running. ¬†DONE though which is a big relief!! ¬†Two more attempts to go…

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!!

Day Six of the 10 in 10- definitely over half way!!

Six marathons down and definitely more than halfway through now! ¬†These blog posts are probably going to get shorter and shorter, sorry, I’m absolutely exhausted. ¬†Today was a tough one- didn’t sleep at all last night and was feeling over-emotional this morning which didn’t help and I was crying pretty much continuously from about 5am. ¬†I was still a bit tearful at the startline and spent most of the first two laps crying while running which really wasn’t ideal! ¬†I was listening to Bowie’s Ziggy Stardust and Aladdin Sane albums though which really helped and by lap four, the crying seemed to be easing off. ¬†Definitely good because it’s hard to breathe, cry and run all at the same time!

Weirdly I’d managed to make up enough time to be able to walk/run most of the second half which was a relief because I was knackered by then from the combination of lack of sleep, crying and running on tired legs. ¬†I put on Bowie’s Reality Tour album which is a nice mix of live tracks and slowed down into the run. ¬†Laps five and six were pretty much zombie running and by lap seven, I’d caught up with a woman I’ve run with a couple of times before so we chatted for the last couple of laps which was really nice and really helped to keep my mood a bit more stable.

At the end of lap seven, I had enough time to run into the garage and buy a diet Coke which was definitely needed and tasted amazing! ¬†It was really, really hot again and there’s no real shade on the course so hard not to overheat :/ apparently it’s going to get even hotter by the weekend which I’m really not looking forward to. ¬†But only four more marathons to go!! ¬†REALLY hoping I can last that long…