I have met a lot of really special people through DWED. And that is how I was going to start this blog post, like a gentle swan song, but that isn't accurate or my style. This is such a huge decision for me I need to tell the truth, I need to justify myself. I saved people through DWED and they saved me in return. I know that I could never have survived recovery from diabulimia without dwed, without Erin and the facebook group that let me know I wasn't alone. I can't put enough importance on the early years in that group, for both the mistakes we made and rules we enforced globally as a result. I made so many friends, so many crucial connections.
There were two girls in particular though that became like family. Both of them went through medical crises where I cried and told them I'd kill them if they didn't get better, both of them openly called me big sister and our relationships were exactly in that vein. In the end there was only one number I would pick up after 1am. If love alone could have kept them alive they wouldn't both be both dead.
This is the hardest thing I've ever had to say, but I need to say it.
When I started DWED I lost my support system, all my friends, my career and my old life. You can't say how bad things are when you're the example of recovery, you can't tell a friend that you can't deal with their relapse when you are supposed to be so beyond that it's not even an after thought when they tell you how upset they are that they've swollen to a size 8, when you're a size 18. So in the beginning I cried quietly, on my own for the most part and then became totally detached, it was like if I could just work harder and do more then somehow my own nightmare would disappear. So I had a full time job, a part time university degree and a charity that occupied my every waking moment.
To say that it put my relationship under a lot of strain would be an understatement. And people don't realise that DWED has been as much Jon's endeavour as mine. When I finally had to pull back my hours to make up the time that DWED needed, Jon took virtually full financial responsibility for me. There were 2 years that I didn't pay any rent, at all. It wasn't fair on either of us. I find it hard to not take it personally that so few people donated to the £3 campaign, there were months where I was working a 100 hour week and making as little as £120 a month, barely enough to cover my oystercard. The stress was constant and all consuming, I didn't have time to exercise, I was drinking too much and soon it was affecting my mental and physical health to the extent that the Eating Disorder did in the first place.
My old friends seemed like aliens to me, I didn't understand how to have fun any more, I was too busy stressing about my phone buzzing, is it a text, are you ok, are you in dka, yes I can talk, no I'm not busy (YES I WAS), do you need an ambulance, who can I call, NO NO I wont call I'll stay with you', shit who's emailing me, check the forum.... it was/is relentless.
'What do you do?' became such a loaded question, 30 minutes later I'm sharing my 'I had a stroke at 24' story, 60 minutes later OH MY GOD you did women's hour, 90 minutes later I'm describing the ins and outs of NICE guidelines, 120 minutes late 'have you met jacq she's so BRAVE'. I have never felt like that though, more like I was filling conversational space with the only thing that made sense to me any more. And it got so boring, I got so boring, it became like a speech and I was so angry and frustrated if people didn't get it, and god help you if I'd had a drink. So I started feeling incredibly weird around people, and unsurprisingly the events to social gatherings trickled away, recently two people that I once called close friends got married, I didn't even know they were engaged. But that's ok because it's like I inhabited a different world, where everyone was suffering, everyone was on the brink of death, all the time, life was joyless, every communication was a plea for help and when I failed, if someone died or I couldn't connect to them the pain was visceral. Someone I knew through a friend who had just come back from the Gaza strip told me I was suffering from hypervigilence. I laughed, but she pointed out the fact that I actively jumped when my phone rang and that I'd lost more friends in that last year than she had.
I don't know when that will change. In the 5 years since that conversation, I'm still terrified of my phone.
I have a few friends from the old days that have stuck by me regardless. I went from being the person my friends could turn to, to constantly needing support and I'm so grateful, and I'm still a shit friend, because this ALWAYS takes precedence, and I'm lonely. That's my fault and also something that I need to change. I have a lot of people in my life that think they're my friends but honestly it only goes one way and at some point it will come round to what I can do for them as DWED, so to me it's not a friendship, it's work.
I didn't realise that for a long time though which is why I would protest my fiancée telling me I was still working at 10 o'clock answering emails and texts, no no, 'it's my friend' I'd say, 'I just need to write this letter for their doctor then I'll be done'. My mother in law said recently, 'oh it's so nice to see you're not so attached to your phone'. I hadn't noticed, it wasn't work after all I was just checking in on my 'friends' and that's why I'm stepping down from DWED.
DWED is making me sick, over the last few months because I've been ill, I've been pulling back my involvement. I have never felt better (despite my illnesses). My blood sugar is like I'm a different person, my anxiety has never been less, my PHd is on track - EVEN THOUGH I COULDN'T TYPE for 2 months and the one time I did interact with DWED issues I got so stressed out I developed a full body rash. I am a health psychologist For Fuck's Sake. This has to stop. This year alone I have had shingles, hyper - autoimmunity, have developed Dupuytren's contracture, high blood pressure, broke my rib, broke my wrist and my asthma which I thought had long gone, landed me in hospital where they told me I was heading straight for CVD. I'm not going to make it if I don't start truly looking after myself.
So I am putting this out there because if I don't I wont. I am stepping down from my beloved charity, which is devastating. And I feel like I'm still trying to convince myself here. I need to do this for myself and also for DWED, I am not the right person to help, I don't have the capacity physically or mentally and I don't want to be another person who isn't fully invested. I'm so so tired.
I am incredibly proud of DWED and everyone who has been involved, and I'm also truly grateful for the lifelong friends I have made from it (if you know who my favourite bands/ artists are, I'm talking about you). DWED has literally been the best and worst thing that ever happened to me, it changed, saved and ruined my life concurrently. I'll still be doing my research and training, I'll still be running about the country talking to consultants and psychologists but I will not be involved in any support and will be moving the day to day running of DWED over to interested parties from the 1st of October. This will coincide with year two of my Phd which is going really well despite all the setbacks I've had this year. I'm going to take some time out, do some sewing, some swimming, make some money for my upcoming nuptials, hangout with my friends, family and long suffering fiancée. I'm not sure what DWED will look like in 2016 but my hope is that it will be better, stronger, more resourced and like me in a lot better shape.
So I'll end this with one of the last last conversations I had with Ish, who I still can't express my grief over.
'You need to fucking put yourself for once mate
Something's going to give. You have a choice: your health, your relationship(s) your PhD, dwed, something else that means a lot to you
Seriously you're fucking one in a million
And I don't want you to have a fucking heart attack and die'
I hope that somewhere Ish and Sian know that part of the reason I can't do this any more is because my heart can't take another break. Everything I do has them in it and that includes looking after myself properly.