Talking to Anorexia- recovery and me

So the other night Louis Theroux was on TV, a documentary about anorexia is probably the last thing you want to watch when recovering from Anorexia, but part of me was intrigued, I wanted to know if everyone else experienced the illness in the same way as me and was interested to see how they coped with their recovery. I won’t spend this blog dissecting the documentary, but I’d encourage you to watch it yourself and make up your own mind.  In a way, it felt like it had it’s foot between two places – not quite showing the full horror of an out of control eating disorder, but not quite showing in full how difficult recovery is. I suppose it would be unethical to show how hard recovery can be due to the fear of discouraging people from seeking treatment,  so I can understand why it was presented  as it was and it was likely I would be more critical than ‘Joe Public’ who might be watching it. I recently watched Overshadowed on BBC3 which went some way to showing the madness of a descent into an eating disorder and how it slowly grinds the sufferer down before everyone’s eyes. The misery of the compulsion to just keep running, but the terror of not being able to stop even though your chest is telling you that you might have a heart attack any moment. Like a person possessed.

In this post I wanted to write a bit about recovery and how it’s effected me. When you are in the full grip of starvation your body goes into ‘sleep mode’ to protect itself – I won’t go into the science of this here, but there is plenty of information on the internet if you would like to know more. Essentially how it effected me was that I was able to over exercise (think moving from waking up, to going to bed at night) on very little calories but without feeling much of an ill effect. As I became more unwell however the ill effects started to creep in, chest pains, feeling dizzy, feeling the cold – but I still had the energy to exercise, I felt like a Duracell bunny.  When I went into hospital for 3 weeks last month and began eating again it was like I’d been hit by a train, everything hurt, I could barely keep my eyes open for much of the time. I couldn’t think straight, I was muddling words and had to write everything down. My muscles had wasted and my legs were wobbly, the more I ate the weaker I felt. At times I became very dizzy after eating, I think this was my body just getting used to eating again, but it was frightening especially when I felt I was doing all the right things. I found whilst in hospital my body temperature fluctuated wildly – when I was first admitted I couldn’t be without my hot water bottle, but towards the end of my time I hospital I was experiencing ‘hot flashes’ where I’d suddenly become very hot – a couple of times I had perspired so much I was worried I had wet myself! When I was discharged home after 3 weeks I was still feel very weak and tired, simple things at home which I’d be rushing round doing like a whirlwind before were suddenly monumentally difficult. If I left it more than an hour or 2 between meals I’d experience all the symptoms of low blood sugar, which meant I was too scared to go out alone in case it unexpedley hit. I started to experience swelling and pain in my legs, including a week of shooting pains, my understanding is that it was my body starting to repair the cells which I had damaged now I was giving it more energy to do so. Sleep at home was still difficult, I’d go from having loads to complete insomniac, part of my fear stemmed from when I was really unwell and was too frightened to go to sleep. Whilst in hospital I experienced quite a bit of gastric distress to begin with including an upset stomach for a number of days, which made things interesting when my bathroom was being locked after meals (we won’t talk about ‘loo gate’)One thing you aren’t told is that most of the weight initially goes on to your stomach, I read an article online a while back which described the recovering body as ‘barrel’ shaped, which feels accurate – my stomach is protruding, but legs/arms etc haven’t caught up, I’m a moomin! I keep repeating the mantra that after a period of time of sustained eating it will redistribute. It is tricky though as clothes feel too tight, even bigger sizes, as my middle is so distended. It’s hard not to go back to old behaviors when faced with this image. I try not to look in the mirror, I wear clothes which I feel comfortable in (anything tight is out of bounds) and I bath a lot as I like the feeling of being weightless as it stops me from thinking about the ‘bloat’. My hair is also dropping out, despite not having had a hair cut for 2 years I conceded at the end of my hospital admission purely because I was dropping long hairs all over the place. It’s still falling out 6 weeks on, but care of what I look like hair wise just isn’t there. Heartburn is a daily occurrence, for years I was treated for asthma, but it was actually acid reflux causing wheazing and congestion, it was fantastic when it went away after treatment, but it’s now back with avengeance. I have to play the game of wondering if I’ve screwed up my heart or if It’s just eating food causing the pain. It’s doesn’t make relaxing any easier.

All of the above paragraph focuses on the physical effects, there are also the psychological effects to deal with. The guilt of eating again, the disgust when faced with feelings of extreme hunger and giving in to them. When you begin to recover you can become very hungry at times which guides you towards eating what you would class as loads of food, but in reality it’s just what your body needs and isn’t generally that much anyway. Not eating made me numb, which felt good, it dulled my mood swings. Eating again has brought all of that back, I’ve have periods of elation where I’ve been very productive, but then I’ve been hit by crushing depression where even moving has felt painful. I have flashbacks to my behaviors of when I was at my most unwell, it doesn’t feel like me, but I feel terrified of going back back there. I don’t feel I like I have all the tools in my box to fight this yet. Even in recovery I was having auditory hallucinations which have gone now I am a higher weight, I don’t want to go back to that, they frightened me.

There’s the ‘loss’ of identity as well, I am no longer thin, being thin was always something I felt I had going for me, as I fail at most other things. It’s coming to terms with that change which can be hard. There’s also being able to cope with the comments of ‘you’re looking well’ and not interpreting it into ‘your overweight’ – people mean well, but they don’t see my short circuiting brain. There’s also the rebuilding of your life which goes alongside things- family, friends, work which you may have isolated yourself from, this can be hard when experiencing crushing depression or some of the physical symptoms above. Something so simple as sorting out a neglected unpaid bill which cropped up during recovery can feel like a mountain. Calorie counting is another head consuming activity which is hard to step away from – lots of meal plans and websites suggest how many calories should be consumed and it’s hard not to continue to obsess over calories in recovery. I described to someone today that it’s like your brain is infected with a virus which won’t go away, if there was a switch to wipe it away I’d take it in a heart beat. When moods fluctuate it can be hard to engage with treatment and continue the relentless treadmill of assessment/planning, when things go wrong (which they will) having the ability to pick yourself/myself up again, dust myself /yourself off and keep pushing feels monumental.

Despite all this negativity getting better brings small glints of happiness –

• Trying a brownie my daughter had made and seeing her thrilled that I’d been able to test her baking
• Having a family picnic again, so key in so many of our adventures
• Being able to relax a little and not feel compelled to constantly exercise
• Thinking about the future and what that could bring
• Feeling a little bit less scared that I did before.
• Laughing again

It’s all baby steps, chinks of light to build on. Before I became unwell I had no idea about eating disorders and what someone might be going through. It’s not something I’d wish on my own worst enemy. People say it’s about choice, I am choosing to eat, I am choosing to comply with my plans, but the thoughts pursuing/berating me me in my head don’t feel like my choice and I wish they would stop.

In respect of what helps with recovery I’d suggest the following:

• People in your life which make supportive comments along the lines of Louis’s comments in the documentary. You don’t need to be an expert to say something nice/supportive. Try to focus on the positives when making comments, not the slip ups.
• People in your life that understand the complexities of an eating disorder -education is the key, do your research and support someone with knowledge behind your advice. Telling someone addicted to exercise that it’s okay to indulge may not help their recovery.
• A professional to listen and offer empathetic advice during at least the first 3 months of recovery (or as long as it can be provided/funded, longer is better) I don’t feel I’ve had this, and it feels hard. A psychologist or counselor alongside someone with medical knowledge would be best placed to do this.  Sadly, although the documentary Louis presented featured inpatient and outpatient day care many areas in the UK don’t have this and people are crying out for more support. I wonder if more funding was put into this there would be less relapsing patients. I am sure it must be frustrating for the people providing the limited support too as I imagine most of the time it’s just lack of funding. Many areas don’t have the facility for people to attend as day patients to eat their meals/have support for example.

I am sure there are many more suggestions, but these are the top 3 things I’ve most craved as missing when things have been difficult. I’d be interested to hear the thoughts of others on the recovery process. To me it’s felt like a different stage each week, a bit like working your way up through computer game levels. But as we all know computer games will have ‘baddies’ or the ‘boss’ to throw a spanner in the works and the real skill is being able to maintain getting better with those difficulties thrown into the mix.