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

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

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

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

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

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

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

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

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

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

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

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

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

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

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



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