The Skeleton in my Closet

There will be people out there who call me irresponsible for writing this about myself but I am so so over looking after everyone else first. This needs saying out loud for me. So this is a trigger warning please do not read on if you are sensitive about stuff related to food, body image and eating disorders.

Before I start this blog I have to disclaim. I am actually medically obese, not just a little bit over bmi, not just in my head, no I am actually fat and incredibly unfit. I have been on an epic amount of steroids, my work schedule has been insane, I've spent much of the year with broken bones or faulty lungs (not to mention shingles) and I haven't been careful enough with my eating and exercise to avoid the inevitable gain of being mostly immobile or stressed out of my skull. I am fat - that is a medical fact.

There comes a point in every fat girls life where she cant angle out of a bad selfie. There comes a point in every fat girls life when she is confronted with the truth, 'no, it's your fat that makes you look fat'. There comes a point where you have to admit to yourself... this isn't recovery, it's denial.  That is extremely difficult for me to say, not because of what I weigh but because of who I am. I am the director of an eating disorder charity who suffered with those conditions for.... well a very long time. So we don't say the F word..... EVER......even when it's true. I NEED TO LOSE WEIGHT. There I said it, it is now a medical imperative that I do. The last doctor I saw said I wouldn't see 40 if I carried on with my lifestyle the way it was.

I NEED TO LOSE WEIGHT. The thing is that this has been an absolute truth in my fucked up brain when I really didn't, when I had an ITA, lost my teeth, my kidney function, when I was rake thin and severely, severely mentally ill. Its the same sentiment from a different point of view, under different circumstances, 7 years off the last time that statement was the furthest from reality. When my weight was diagnostically anorexic.

I NEED TO LOSE WEIGHT is now empirically true. I know exactly how I've ended up in this position, ironically it's not by overeating it's by being completely inconsistent. When I'm working (ie all the time) and therefore am stressed I find it very difficult eat properly and at the right times, some days I will go to 9pm before realising that I've not eaten, I'm hypothyroid so I can't get away with that, it confuses my system and when I do eat unsurprisingly my body stores. I can pretty much eat what I want, as long as I'm consistent I lose weight, so my haphazard eating isn't an eating disorder thing. I am doing the exact opposite to what my body needs for my weight to stabilise. As I sit here typing I am 7lbs down from the 14th, purely because I'm around people who do eat appropriately and encourage me to do the same. 

However as you can imagine, that statement causes panic. I might as well say 'I NEED TO DRIVE THE WRONG WAY DOWN THE MOTORWAY' My loved ones are quick to remind me of all my achievements, successes and accolades and I understand that they want me to feel proud of myself but empirically that doesn't mean anything to the state of my health as defined by my weight.  They are rightly terrified by the notion of me being preoccupied with the number on the scale. I find it so easy to lose any semblance of normality and focus only on 'that number', the number down the rabbit hole which can never be reached. In the words of Thom Yorke 'I've got Myxomatosis'.

But I can't run from it now, I need to lose weight. I saw myself on TV recently, my family were so proud, all I could think was FUCK seeing someone my size would have put me off recovering and that is.... fact. I don't look like I should be telling anyone about being healthy, and that is a dreadful position for me to be in, but one I finally need to face. 

SO please don't molly coddle me, I need to own this and say it when it's actually true so that I know when it's not, it doesn't matter that 'my skin and hair are looking great' or that 'I'm doing a phd'. I... am.... fat. That is something I have to deal with, honestly, without bullshit and (however warranted) paranoia. It is, I might add not the only thing that needs rethinking. My stress levels need to be reduced, my work schedule needs a revamp, my liver could do with a break and I am already on the road to being cigarette free. 

Most importantly I don't want to be a hypocrite any more, I want to know that when I go out there and talk about food and eating disorders and diabulimia as an 'expert' that I am in the best place mentally and physically that I can be and just now I'm not. I'm stressed, overworked, unfit, fat and miserable about where I find myself.

Yes there is a skeleton in my closet but she won't be making a reappearance if I and those around me can be sensible and honest.

 

On Ends and Beginnings

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.  

Diabetes Rehab Week 3 - The High Blood Blues

Average Blood Sugar 17.8

Urrghgh, well this week has been a total bust on the blood sugar front, its been one of those really frustrating, I hate shitty Diabetes weeks. For the first time in about 2 years I ended up in full blown DKA because I had a hypo, disconnected my pump and forgot to reconnect it and of course in my attempts to sort out my diet I had eaten breakfast lunch and dinner then that night I somehow managed to pull my pump out of my arm, in my sleep. 3 days this week I have spent in bed including today as I write this, I've missed work, I've missed important meetings and my blood has rarely seen below 20 and when it has its been hypo.

People are always highlighting Hypos and how awful they are, which I do agree with, but I find hypers to be much more draining, damaging and much less talked about. I hate being high, it's like everything slows down including my cognitive ability, my body feels pinned to the sofa or the bed and my bones feel as if they are made from lead, I can't breathe, everything aches and my vision swims. The only thing I am capable of is sleep.  Not a good look.

High blood takes me out of my life and that's why I hate it

So I think I'll have to mostly low carb next week to try and get rid of this extra sugar, the cgm will have to go on too, I had so much to do this week that I didn't want to beep all over the place but if I had put it in I would have known that I was high before it was too late.

This week Diabetes has let me known who is the boss, it's not me


Diabetes Rehab Week 2 - Not so good

Av blood sugar 13.4

I knew that this week was going to be hard. I was out of the house all day, everyday apart from Wednesday and Saturday and this directly equated to not eating. It was also a fairly stressful week, I had my first tutorial at Oxford uni with the brilliant club key stage 2 kids which I thought was going to be way out of my comfort zone, I had to speak at a really important conference on Tuesday and attend another on Friday there was no day where I wasn't up at 6 and home before 9, I also had my first Circles meeting with a new client. Circles is a charity I volunteer with that supports young people with learning disabilities and sexually harmful behaviour. I also had my undergrads to teach and my Phd to work on. All in all it was hectic, chaotic, stressful and yesterday I spent the whole day in bed watching House and eating crap.

And this is at the crux of my problem, I want to do all this stuff no matter how out of my comfort zone it puts me, I was so nervous on Tuesday that I spent the hour before my presentation wondering if I was nervous or just low but I lost so many years to my Eating Disorder, so much opportunity that even 6 years into recovery I feel like I have to grab everything life throws at me with both hands. Unfortunately my natural state is that of anxiety so if I am in a stressful situation which I often am that level goes through the roof and my appetite out the door. I did't eat anything on Tuesday, the first thing to pass my lips was red wine despite this my sugar was high and I couldn't get it down. I also couldn't sleep despite being completely shattered. The only plus is that I successfully avoided binge drinking which is no mean feet for me in a week with this much stress going on. What is problematic is that my cough came back, my whole body is still in agony from the stuff I had to cart to Oxford and back. In essence my body feels like it's shutting down, it probably is

So my food intake was sporadic and inappropriate, I had one bad day where I didn't eat and 6 days where I did better on some than others and several readings in the 20s, breakfast was nowhere to be seen . And all of this is because my anxiety rules my diabetes behaviour. I should say at this point that although this week was busy it was great, I had a lot of fun and did some really important stuff. I want to keep doing that and I can't if I don't get this sorted out. So I need to have some kind of plan before next week so that I can get back on track. Ironically although I plan compulsively  (seriously it's part of my OCD) I have major problems following said plan for any consistent time frame. Probably because these plans involve stopping smoking, going to the gym, sorting out my diet, quitting drinking and losing weight all at the same time and long term.

Bad week this week - better next week

  

Diabetes Rehab Week 1

Week 1 Stats, HbA1c 9.8, Cholesterol 6. Av Blood Sugar 12.1


02/11/2014


Ok so as I am determined not to try and do everything at once I am going to break my entire problem into smaller parts and take them a quarter at a time. I struggle a lot with food and honestly I don't even know why any more, it's not a weight loss thing, in fact if I don't eat in a regular manner and am inconsistent I put on weight. As someone in recovery from an Eating Disorder and who also has hypothyroidism my metabolism goes into shut down if I don't eat, also I think that avoiding food in the morning is actually putting my liver on notice and making it dump out sugar, further affecting my BG readings. I then spend the whole day playing catch up and probably talking myself out of eating mentally because of my readings. So this month my focus is going to be about actually getting in a routine around breakfast. I am a notorious breakfast skipper, I hate eating in the morning I usually feel a bit sick. To allow for this I have bought a nutri bullet.

Urgh the nutri bullet

I have tried a few recipes to date but they have so far all tasted like regurgitated baby food, Disappointing considering how expensive it was :( My mum makes amazing things with hers but mine taste like shit, I will not give up however!!! I think drinking in the morning is much more attainable than having anything solid so I will soldier on, Of course one of the issues is the amount of carbs, I think this will probably be a process of trial and error, so if anyone knows any good recipes pass them on please :)


09/11/2014


Ok so this week has been my first week of Diabetes Rehab and up until Thursday it was great. I actually managed to eat breakfast everyday, even though it was just a pot of yoghurt and some blueberries. This I found has totally ironed out my morning highs, confirming my suspicion that in the absence of food in the morning my liver is dumping out sugar. I premade my lunch of quinoa, roast veggies and home made chilli, lime and coriander humous for 4 days and had that down pretty solidly. I also wore my cgm consistently and thanks to my friend Alex's suggestion of injecting 20 mins pre eating for the first time ever avoided huge postprandial spikes and until Thursday never had a reading over 12 which for me is quite frankly miraculous. And then I fell off the wagon and I don't know why, it was just like all of a sudden I couldn't be arsed, I got up on Thursday and just didn't eat cue rocketing blood sugar, fatigue, the return of a cold I had successfully been getting rid of, malaise, avoiding emails. I have no idea why I did this so on Friday I was determined to get back on track, except I didn't have anything for breakfast so I just didn't eat again WHY oh Why - cue further illness a bloodsugar of 25 cancelled social plans and a general feeling of inadequacy. Yesterday I forced myself into a smoothie for breakfast but my CGM isn't back on and my BG was 15 this morning. And here I am writing instead of eating.

However I am not going to crucify myself any further 3 days of near perfection is a) something very new and b) something very positive so I will focus on turning that 3 into 4 next week. Next week however is crazy busy and I am speaking at an NHS event that I have spent about a year helping to organise, no doubt this will be stressful, I also will be working out of the house 3 evenings so I need a plan to ensure I eat properly.

In other news I have decided that I can't do this alone so I have utilised my Clinics Psychiatrist who has suggested (surprise surprise) CBT to deal with some of my residual issues around food. I have done CBT several times before and I have found it to be largely ineffectual however in those previous times I was severely mentally ill and CBT was the equivalent of a plaster on a gushing wound. I am in a much better place now and though I am wary I will give it a bash. I have been trying to find some kind of self therapy to do using audiobooks but none of it has really stuck so I don't have anything to lose.

I have also applied for a health trainer via Haringey council, it's free and I don't too much about it but I figure the more the merrier so lets see what happens with that    


Today's Soundtrack


Diabetes Rehab

Urrgghh, My Diabetes is crap. For the last year my HbA1c has been creeping up, despite repeated efforts to utilise my continuous glucose monitor, numerous dietary changes, planning, planning, replanning, trying to increase my engagement with my medical teams, self help. self therapy, self hypnosis blah blah blah, you get the picture.

So I have decided to put myself in Self Imposed Diabetes Rehab.

As anyone who knows me can testify I have a somewhat hectic lifestyle, Diabetics with Eating Disorders, my Phd and teaching all ensure that I am pretty much ran ragged constantly and my control pays the price, I struggle to prioritise my own health. This gets more apparent as my stress levels rise, there is so much else to deal with that I just don't have the headspace to engage with the D the way I should.

This is of course a simplistic explanation as to why my Diabetes is not on track. A long battle with eating disorders and other mental health issues that have never really been properly treated in a systematic congruent way has left me wondering if my whole attitude and resulting behaviour is simply a result of maladaptive coping.

As the founder of DWED I have long been a proponent of treating Type 1 holistically, involving as many teams as necessary and engaging as many approaches as needed until the right regimen sticks. When dealing with my own health however I have not been so enlightened. Instead I have been frustrated, inconsistent and guilty on more than one occasion of trying to 'logic' myself out of my problems. I feel like I should say at this point that I am not in a bad way, in fact in many ways I've never been better, I have a great relationship, the financial troubles of being a charity director are finally behind me, I love my Phd and I get a real kick out of teaching. Still, though, I'm not quite right, I just can't seem to get traction with my Type1 and I'm still not where I want to be. I kept on thinking that as soon as I sorted X then Y would sort itself out, the dietary problems, the smoking too much, the lack of physical activity ect but pretty much all my Xs are in place and all my Ys are still all jumbled up. Put simply to do what I want to do I need to be in a much better place physically and I need to find a way to stay there. The consequences of not sorting myself out are grave, I have spent 2 out of the last 4 weeks sick, my thoughts are jumbled and I can't get a grip on what I need to being for my Phd, I'm tired, my asthmas playing up for the first time in years and I'm frustrated and annoyed.

So I am going to design my own programme of health care based on my own principles, sounds easy enough right? Except if I'm so smart then why haven't I done it already? I really don't know what's stopping me, I make all the right noises but struggle to follow it up. As such I'm going to try and take a different approach and build up my self care in a systematic way engaging in different strategies.

I have been thinking about doing this for a while but lets just say it's been one of those Y variables. I think my programme will rely heavily on psychological approaches as I can't help thinking that this is at the crux of my problems so I am putting this out to you, my lovely diabetic friends to see what you suggest in terms of how you handle your diabetes care, what dietary tools you use, if you've ever utilised psychological therapies and just basically get your feedback.