#Neural rewiring

Vacationing with an Eating Disorder..

Vacationing then vs Now

We have just returned from a few days holiday, which I feel incredibly lucky to be able to do for numerous reasons, 1. We live in a place we can travel at present and secondly my eating disorder was not allowed to dictate my behaviour for the first time in many years.

Why are holiday’s so hard for people with an eating disorder? Often in the midst of an eating disorder we use behaviours to cope with uncertainty, change or triggering situations. Firstly, you are away from home, your regular environment. This can be full of uncertainty and planning can go out of the window. Tonnes of food challenges can arise. Challenges you may not have foreseen, such as not being able to follow a regular schedule, a meal plan. Eating out and experiencing new dishes. All of these things can be extremely triggering. It’s hard to imagine if you’ve never experienced an eating disorder.

Here’s how a holiday for me used to look like:

Weeks leading up to vacation:

Enormous anxiety and dread. Escalation in behaviours in response to increased thoughts and fears regarding the uncertainty of said trip. I would buy into the “ prepare for the summer body diet culture crap” and it would set my eating disorder into a frenzy.

Then the event would arrive, no matter how much “ event restriction/ compensation” I had undertaken I would still feel ridiculously out of control and fearful that my constant was about to change. I would not be able to predict every meal and therefore calculate my intake. Holidays can be inactivity. This used to terrify me, how was I going to hide my “craziness’, fit in my ridiculous workouts in new territory? All the while Hitchhiker ‘HH’ would be telling me I was disgusting. How can anyone be present and relax on holiday when this is going on?

Changing experience of holidays’ with time and at various points in recovery;

Once I commenced recovery the anxiety around the trips shifted to a different kind of anxiety. When you start recovery, especially early on, you need to eat very regularly. Holidays can make important established routines very tricky to follow. I would worry if I would be able to eat the food available. Eating in front of people can be immensely anxiety provoking and largely, trips involve eating out. It’s a point where you are challenging ‘fear’ foods and there’s all kinds of food challenges that can happen on trips which for the person experiencing an eating disorder is overwhelming.

Some restaurants very unhelpfully have nutritional values on their menus which can be a minefield for those of us trying to recover from an eating disorder. Trying to do the “ right thing for recovery” when in an already stressful situation and then presented with your demons on a plate, in every sense is really freaking hard. I used to use one hand to block out the numbers. Or ask someone I trusted to look at the menu, find something I’d like and pick until I could deal with this. Until I got to this point, my eating disorder was too strong and it would not allow me to choose what ‘I desired’. This adds to the stress, feeds the eating disorder and makes the time really challenging. It gets better, I promise.

You can’t switch your calculator of a brain off overnight. It takes time and practice and many situations and repeated actions until your brain doesn’t equate the numbers with relevance. But it can be helpful to go to places you don’t know the nutritional value, because your well trained brain sometimes doesn’t switch off for familiar items. Now I can go to a restaurant with the nutritional values and choose what I desire without coercion. It irritates me that the diet industry even seeps into the catering industry and influences our choices. (I spent ages in recovery with a black marker pen scrubbing out nutritional values on boxes etc) Now I don’t automatically read or know the content of EVERYTHING. IT is possible to train your brain to stop paying attention with effort. Black marker pens are brilliant for this.

ALSO, FOR THOSE WHO NEED TO HEAR THIS, I’M GOING TO SAY THIS ONCE: CALORIES IN DOES NOT EQUAL CALORIES OUT. OUR BODIES ARE WAY MORE INTELLIGENT THAN THE PEOPLE WHO CAME UP WITH THIS LIE.

What my life would look like after I returned from a holiday:

A completely false sense of guilt for the “loss of control”. I say false because, I was not in control on any of the trips. I had abided by my eating disorder rules and stipulations. I might have eaten something slightly outside of ‘HH” rule book and paid an enormous price of guilt, shame and most importantly regret for all the things ‘HH’ made me miss out on because I listened.

I would return from holiday, unhappy, compensate for my warped view of the trip and over value I placed on it and nothing would change because an eating disorder is a constant event planning, life of restriction.

A Vacation now:

Leading up to the holiday, the old neural pathways are fragile and the ‘HH’ thoughts do get louder. The thoughts around compensating return. But the big difference now, I know these thoughts are lies. The do not lead to me feeling happier, more confident on my holiday, more relaxed and present. No the complete opposite. Therefore, I have to be vigilant I have to make an effort to do the opposite.

Vacations are a trigger. Knowing triggers, helps you plan and prevent slips or relapses or in the event of either recover from them quicker.

My husband and I talked about the trip prior. He knows my triggers pretty well now.

For me, this meant, making sure we always have ample snacks around incase we get caught somewhere ( we spent 6 hours driving and quite remotely at times).

We knew some of the foods would be challenging- so I set myself some food challenges. Like eating spontaneously on the road, eating foods that are deemed as “unhealthy”. When realistically no food is unhealthy it’s all fuel.

It was going to be the first time on a beach in my togs since I weight restored. This was a huge one. Putting on swimwear for the first time, since weight restoring is a whole new chapter in recovery. I’ve gotten used to wearing larger clothes to my previous weight restored body. That was a challenge in itself. But putting on swim wear is next level discomfort and vulnerability. Society tells us, to go to the beach we need to be “bikini/ beach/summer body ready”. Just putting it out there now, “bikini/summer body’s” do not exist. It’s a societal fat phobic term, the body you inhabit in, is beach ready whenever. If it can get you to the beach, it’s ready!

Learning to adapt. This has been a massive one for me. Whether it’s adjusting to body image, which is something that naturally creeps in on vacation. Being surrounded by different body sizes, it is important to feel as comfortable in your skin as you can. Wearing clothes that make you feel comfortable helps. My body is very different now in recovery, feeling confident and comfortable is hard. It is possible my friend, you shift your focus to the activities you are participating in, rather than the body you are in. I am grateful to this body because it’s this body that allows me to enjoy rather than fixate and agonise. No matter what body you are in in the midst of an eating disorder you won’t be happy.

But for the body image stuff: I tried to think about it this way..

Why is it, the least interesting thing about someone, their appearance is what we judge them on so heavily?

Personally, I think I have nice eyes, but that is one of the least interesting things about me.

There is nothing interesting about your, shape, weight or appearance. I don’t care how much you weigh or size jeans you wear.

This has helped me this week when I found my thoughts drifting to judging my recovering body. Instead I know I was mean on a paddle board, I am funny and a kind person, that’s way more interesting than worrying about the other crap.

I’m at a place in my recovery where I can eat out, and this can be regularly. I found this really difficult previously. Even so, my old thoughts were there on occasion but each meal I challenged them and moved on. That doesn’t mean I found the holiday as easy as someone who has never experienced an eating disorder. I still had to choose recovery at least 3-6 times a day and not let those decisions impact upon my plans or activity. But I did not engage in the ‘HH’ thoughts.

The holiday was more free and flexible. I felt present. I wasn’t bone cold in 25 degree heat. I wasn’t calculating. Goofy yes, calculating no.

This level of flexibility and freedom is something that has come with persistence and time.

Holiday’s are a time for rest and recuperation from the craziness of our day t day lives, for people with eating disorders they can instil extreme anxiety which diminishes any prospect of relaxation and enjoyment. But there are ways of managing them. As outlined above I think some of this will depend on the stage one recovery to the extent of planning and support required around them. But they should not be as stressful, so I hope if you are someone with or supporting someone with an ED, you can find someways of reducing the anxiety.

Things that I have found to be helpful when planning trips:

1. Talking with your treatment team before (and after)

2. Planning for potential triggers

3. Identifying potential triggers and a plan in the event of trigger-what’s in your toolkit

4. Planning food challenges for the stage of recovery, with appropriate support.

5. If following a meal plan, how the trip might be helpful or detrimental and planning around this

6. Wearing clothes that make you feel good.

7. Making sure you always have appropriate fuel available

8. Do you need to know where you are eating? (again I think very individual) I did at some stages.

9. What activities will you be participating in

10. Who are you going to be travelling with, are you supported/ triggered by them.

All of these are or have been part of my own trigger prevention and plan. This is growing/ changing as I encounter potential triggers or progress through recovery. You might have some similarities but you WILL have your own.

OCD and anorexia…

OCD and eating disorders…

Statistically people with eating disorders are more likely to experience co-morbid diagnoses, such as depression, obsessive compulsive disorder, anxiety, borderline personality disorder. There’s a lot of research investigating whether they are biologically, genetically connected.

When I was six it used to take me almost three hours to go to bed. I developed obsessive compulsive disorder (OCD). There are many overlapping features of OCD and eating disorders. I’m not sure that my OCD at times was separate from my eating disorder. I think it was like a shape shifter that adapted to fit my eating disorder.

The DSM-5 characterises OCD by negative repetitive thoughts that are intrusive and often result in compulsive behaviours to pacify the anxiety evoking obsessions. Common obsessions include ‘cleanliness, tidiness, numbers and many others.

My OCD was not your stereotypical “super clean and tidy” kinda picture. No it carried many similarities to my eating disorder compulsions but it did not relate to food. It began after several people close to me passed away before I was old enough to understand death or process emotions. I developed an intense fear of anyone else around me dying, or becoming sick. I began engaging in ritualistic behaviours. This involved counting, repeating certain phrases, running on the spot, avoiding certain numbers, turning light switches on and off and many more. I would perform these rituals or act out compulsions until I felt a sense of calm. The common denominator between my OCD and anorexia was the intense dread or fear of something happening if I did not perform X behaviour. (Fear in childhood death, fear from eating disorder weight gain). The only way I could silence my eating disorder voice was through compulsions and rituals.

It took a lot of child therapy to reduce these behaviours and challenge the thought patterns. Exposure therapy, similar to that in eating disorder recovery. I would cut a ritual a week until I was free. (A bit like reducing eating disorder behaviours). The exposures were ranked in order of fear and challenged with support.

But….. even though I was only six, I knew the thoughts were nuts. They were not ego-syntonic unlike the intrusive eating disorder thoughts where I believed my thoughts. For example, with an ED thought I truly believed my thoughts such as I “had to eat X number of calories or purge a chocolate bar” it wasn’t until these thoughts were challenged in therapy I could see they were disordered, I would not expect a friend to exist on the little I was eating, nor would I expect them to purge a chocolate bar. I could see after these challenges how distorted my thinking was around myself. I continue to use this, if I wouldn’t expect a friend to do something then why should I expect myself?

Another disparity between my ED and my OCD, I was far more resistant to giving up my eating disorder cognitions than I was my OCD thoughts and behaviours, even though I was just a child. I can make sense of this, neuroplasticity is much harder as an adult. But I do believe this is a distinction between my OCD and my eating disorder.

I feel it’s highly possible that having the predisposition and the appeasement provided to me by rituals definitely contributed to my developing of an eating disorder.

I believe they are both shape shifters. I can draw separations from the two disorders however there was some symbiosis within. For example, there were aspects to my anorexia that from the outside would be very difficult to draw a distinction from OCD. I had ritualistic cleaning behaviours “I had to engage in” to allow me to eat. I would clean the kitchen, from top to bottom prior to consuming anything. If I was interrupted I would start again. This may have been a part of my restriction, although I think more likely it was a separate entity to cope with the anxiety of eating. I don’t feel the thoughts surrounding this were related to the eating disorder.

Eating with very specific cutlery, is a completely different scenario. People with eating disorders often develop strange obsessions around cutlery. In my opinion (and I am only speaking from experience and talking to others who have had the same weird obsessions) this is very eating disorder driven. It serves several functions in the eating disorder. 1. Using a teaspoon (crazy) is a form of restriction. Small bowls, plates all the same. We have to stop. Using the same cutlery can feel “clean” this is an overlap.

My compulsive exercise is driven by my eating disorder. But personally I believe the compulsions and pathways were ignited and learned in my childhood. I would run on the spot or up and down the stairs for hours to feel my heart beating to feel alive. I imagine, my eating disorder reactivated this preformed pathway and used it. My drive to move when in the depths of my eating disorder was very different to when I was a six year old terrified of mortality but it still pacified my anxiety. The two disorders numb emotions that clearly I needed to find more constructive ways of coping with. My anxiety from my eating disorder was fear of weight gain, I was not afraid of this when I was six. The result of movement however, was the same, it appeased the discomfort short-term and clearly I had learnt this subconsciously as a child. This is just my simpleton thought and explanation. They both distract my brain, when I’m worrying about food or washing my hands, clearly I’m not worrying about the thing my disorders are protecting me from. But neither are healthy.

For me, overcoming my eating disorder has been so much harder than OCD. Again some of this will have been my easier to sculpt paediatric neural pathways, rather than my years of entrenched adult pathways. But I also feel it’s the eating disorder itself. We don’t want to recover, not initially from an eating disorder. This is very unlikely to be the case with someone suffering from OCD. I doubt there’s few people who decide that they want to keep their OCD, or that it’s a ‘friend’.

Cognitive behavioural therapy, has helped me with both. I guess that’s the good news about the two coinciding disorders, they are sometimes treated together. But I think it’s been more beneficial from an eating disorder perspective, because those of us with eating disorders have very distorted cognitions that can take some convincing. Whereas, I know that no one is going to die if I don’t wash my hands 37 times, I know it’s a ridiculous thought even though it causes similar anxiety. But I would have argued until I had no more breath that some of my eating disorder perceptions were not unhealthy. For the previous, it was more a case of changing my relationship with the thought- for example, when I get the thought “everyone is going to die if I don’t wash my hands 37 times” I have confronted not participating in the behaviour and “urge surfing, delaying or distracting” so many times now that I don’t feel the same anxiety and I am committed to not performing the action of washing my hands 37 times. No one has died. My brain knows this. For the latter, I have had to develop an extensive toolkit that is ever growing. When I experience a disordered thought, like; a food is “good or bad” and resultant anxiety I challenge the cognition, food does not carry moral value. And to avoid the behaviour I use a skill from the toolkit, self compassion, opposite actions.

Same same but different….

My eating disorder meant I had to eat the same things, same time, I would chew everything a specific amount of times (this was not OCD). It could easily have looked that way. I would eat in the same order. But these all served the eating disorder and were part of restriction.

I was extremely rigid with my rituals and compulsions. These were common to both.

My OCD did not cause my eating disorder but I strongly believe there is a connection, that is biological, genetic and psychiatric. I do not feel that my OCD diagnosis was important in my recovery from anorexia. I’m not sure I even really discussed it with my therapist but I think it is useful to understand the possible connection as not addressing co-existing disorders may make recovery more difficult. The treatments are similar but with variances. We are all complex individuals and so it’s possible for some not drawing a distinction may be ok in recovery but for others it may require addressing them together and with focus on specific aspects.

One thing I know for sure, the anxiety is never about the donut or the heart beating.

Check these out:

  1. https://www.amazon.com/What-When-Brain-Stuck-What/dp/1591478057 This is written for kids, but it has some really helpful principles
  2. “8 Keys to Recovery from an Eating Disorder” WORKBOOK by Carolyn Costin, this is so helpful it has lots of exercises, to challenge healthy self vs eating disorder self. https://www.carolyn-costin.com/books

Shifting the narrative in eating disorder recovery….

Recovery is millions of little challenges

My husband and I were hiking yesterday. We had hours of trail ahead and in between goofing around, talking about our plans for the week ahead we talked about the last year, 18months. So much has happened in this time, like for many people. We talked about people missed. Career paths, life plans and we made jokes about previous events. One event, now an often feature of his jovial mockery and light hearted goading is one of our darkest moments. Often making a situation that was once very unfunny can flip it on its head, make it more bearable. You see that a lot in the healthcare setting, jokes that someone from a non healthcare background would shudder at, is often daily practice. Why? because it makes pain and darkness more bearable and shareable.

This situation we were joking about was one of my biggest meltdowns, i’ve ever had. We were in New York exactly a year ago. I wasn’t really in recovery at this point, although I was fooling myself I was. We had been taking in sights all day, darting all over the place. I had done, what I did a lot at this time. Bargained with myself. I was “allowed” to eat whatever I wanted in the evening because I had been so active during the day. Fucked up beyond all reasoning, but this is how the eating disorder often works. Often that bargaining never actually leads to “eating whatever you want’ but we were looking for a restaurant that would suit us both. I didn’t have much input in restaurants at this point, so it was usually down to my husband to select somewhere. He talks about how incredibly stressful this was. I have no doubt, it must have felt like he was checking for poison for some medieval royalty. I would quash most selections before they had left his lips. However this particular day, it was 1 week from Christmas, we hadn’t booked. So the stress for him was ridiculous. Before he found a place, we spent an hour with us scanning menus, me rejecting. It got to the point where we retraced our steps and chose one at random that would allow us without a reservation. What came next, I don’t really remember. But he does very clearly.

It was a steak & lobster restaurant. There were no other options. There were chips and meat. That was it. After looking at the menu for all of 30 seconds, I burst into full blown tears, sobbing in a packed restaurant. I cannot describe what was going through my mind at this point. Except it was like the world had just ended. I had built the meal up, I was going to eat. Then I was presented with two things I hate, red meat and shellfish. I was petrified of chips at this point. A menu had reduced a 30 something to full blown tears. Inconsolable, snotty ugly tears. We stayed. ‘HH’ screamed that my opportunity had been ruined bla bla. I struggled through the dinner eating chips. Both of us shocked at how irrational I was. I had had moments like this at home but this was in the middle of New York. It’s obvious now, this was plain and simple fear.

But whilst cringing at this event, we chatted about the narrative now.

Eating disorders are not rational.

My world didn’t end. I didn’t die. I just looked totally mental. Now after lots and lots of little moments, challenges, meltdowns I can laugh at how absurd this moment was.

The point of this, recovery doesn’t happen over night. Recovery isn’t a case of going to bed one night and waking up recovered. It’s full of obstacles and challenges. If it’s not challenging it’s probably not recovery and doing jack shit.

Today, he asked me if I wanted an Ice cream. I heard myself say ‘no thanks’. This is a response ‘HH’ has trained to become my default. I am changing this narrative to ‘Yes, please’. Some days yes please is easier than others. But it felt uncomfortable, spontaneously having an ice cream. ‘HH’ certainly did not approve. This is another moment, challenge towards recovery. It was a world apart to the lobster joint. I felt uncomfortable, I got on with it and used to distraction techniques I’ve learnt along the way after. ( Today was repotting some of my veggies, other times breathing techniques can help) But if I’d said no thanks, it would have been a missed opportunity. Without challenges, nothing changes. In recovery discomfort is action. I don’t think I would sob in a restaurant now, unless the world genuinely was ending. I don’t bargain with ‘HH’ any more. There is no bargaining with an eating disorder, that’s an argument you won’t win unless you decide to do the complete opposite of what it’s telling you.

Useful breathing technique: https://www.cci.health.wa.gov.au/-/media/CCI/Mental-Health-Professionals/Anxiety/Anxiety—Information-Sheets/Anxiety-Information-Sheet—08—Breathing-Retraining.pdf

Wading upstream…

Recovery tight-rope ED recovery

Anorexia recovery

Recovery doesn’t have to be complicated. But I think it can be made easier.

Yesterday I got my haircut. ( I know lucky, in non lockdown) But I didn’t appreciate HOW LONG it was going to take! 4.5 hours, Two things firstly, I was able to sit an do nothing for this period. Something I have found really hard to do before, giving myself permission to be still, not fidgeting, standing, on the go or doing something productive. Because our ED’s tell us this is the worst thing a human could do, and it’s lazy. So that’s a victory that this was easy, outside of the boredom of being in the hairdressers on one of my only days off!

But…..today is harder. Why? Because I didn’t plan ahead very well. I always make an effort to eat 3 meals, and normally 2-3 snacks between, because I don’t have hunger signals yet so I eat regularly.

Second…I thought I’d be out in time for lunch yesterday. I wasn’t. I took a few crisps with me * also a win, would have never eaten anything before and I used to envy the people who would sit and snack care free. But I ended up missing lunch. Doing this feeds ‘HH’. I normally plan to have stuff with me at all times. Because missing a meal whether it’s intentional or not leads to energy deficit, which opens up pathways to old thoughts, behaviours. I cannot afford to do this. I expect with time, the odd unintentional meal miss won’t be an issue but early in recovery when there are neural pathways that are so brittle and easy to ignite it’s not a good idea.

I can feel when I haven’t eaten enough, or have allowed myself to get into energy deficit. I don’t have to be hungry to get this, it’s a feeling, and I am grateful I can now recognise it because I avoid it like the plague (or COVID to be more to relevant) But life happens. Like yesterday.

I ate as soon as I left, but I could already feel I felt out of gear. I made an extra effort to have a ‘big’ dinner and a snack before bed. I was not going to let ‘HH’ in. But just to explain how brittle recovery is in the early parts. I went to bed. I woke at 2:00 wired, with a feeling of what I guess was hunger. I felt empty. A feeling I was way to familiar with and “HH’ was there, ‘I remember this feeling it feels clean, now we need to do something, move, we don’t need to sleep’

Insomnia was a huge issue for me when I was sick, possibly the worst part, that and being bone cold all the time. Now for the most part I sleep like a baby, except if i’ve got the balance wrong. So its a warning for me. I got up and had a biscuit, because ‘HH’ thoughts were creeping in and demonising anything. So I ate my hobnob and slept through.

I knew today would likely be a bit harder, this morning questions of ‘ isn’t that too many oats, too much almond butter’ were there. So I added extra. But this is the thing, this is how we can either carry on moving forward, or a slip can happen after a simple innocent incident. Something that someone who has never had an eating disorder never has to think about, or likely understand. But for us, it’s something we cannot be complacent with it’s a tightrope. But again, the rope becomes more like a bridge than a rope with time, because now although the thoughts are louder today, I’m not acting on them. Before I would have and that’s all it would have taken to knock me off my rope. But through repeatedly getting back on the rope, it’s wider, stronger.

I know for next time, I will take my lunch, just in case. Recovery is learning, growth. Prepping like a boss for all the things that knock you off that rope is key. But getting back on the rope is vital no matter how many times you fall.

Recovery bridge Pexels.com

Resources:

  1. https://tabithafarrar.com
  2. https://edinstitute.org/blog/2013/3/31/homeodynamic-recovery-method-guidelines-overview and Gwyneth Olwyn’s book, also available at this site.

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