I read this post by Laura Collins with interest this morning. The research she discusses is a study on the presence of autistic traits in recovered versus currently unwell anorexics. It’s a subject that I am fascinated by, because although I am not autistic, I have a lot of difficulties often associated with the condition. I have, as I said in my reply to Laura’s post, a tic disorder, OCD (now generally thought of as a neurological rather than psychological disorder), food allergies, sensory problems and aversions not related to my eating disorder. In fact, I spent most of therapy today talking about this subject. I am not under the illusion that these problems will lessen if I talk about them enough because they are not caused by emotional issues, they are physical and neurological, but I DO need to learn how to calm and control them better.
The tic disorder is an irritating thing. I have not been diagnosed with Tourette’s because I rarely develop phonic (vocal) tics, 99% of mine are motor tics. These are…they are difficult to describe. It feels like a repetitive muscular itch that can only be ‘scratched’ by contracting the muscle. They are not things that I want to do, and they are not like OCD rituals because in OCD, rituals are usually preceded by obsessive worrying about bad things happening if you don’t carry out the compulsive behaviours. A tic disorder has nothing to do with trauma or family difficulties, it is a neurological quirk, kind of like your brain misfiring. They do tend to get worse with stress, and in my case they also became very severe when I was put on antidepressants. When I was coming off effexor I felt like my tics were trying to take over my body, I couldn’t control them at all and I even developed a stutter that stopped me talking on one of the worst days. Yet another way in which medication and I don’t agree with eachother! Most of the time my tics don’t bother me too much, they irritate me but I mostly ignore them. But sometimes they can be quite distressing – I had facial tics for a while at school which was embarrassing as hell, and tics involving my eyes can become very painful. They tend to fluctuate in frequency and intensity and they also change every few months, so in January the main one might be quickly tensing and relaxing my calf muscles and by September it might have changed to blinking too much. Usually there’s one that happens most often and a whole host of other little interchangeable ones. Most people don’t notice unless they are with me when I’m anxious or excited, then they might ask me if I’ve got something in my eye/my leg hurts/my stomach is OK/etc.
My OCD is different to this. Mostly, I tidy things obsessively. I rearrange things that don’t look ‘right’, I can’t stand to be in the kitchen when it’s messy and I am always loading and unloading the dishwasher (my nemesis!). I’m not phobic of germs but I do end up washing my hands repeatedly beyond the point of necessity if I get something like milk on me. Milk makes me so sick that I have actually become phobic of it! I have also had problems with counting things in the past – when I was very ill in 2007 I counted EVERYTHING. It drove me nuts, I couldn’t walk anywhere without counting my steps. When I was a kid I counted the number of groups of three letters in words for a period of six months or so, which was highly irritating.
I’ve talked about my odd diet on my blog quite a bit, and I am fascinated by the alleged links between neurological and psychiatric disorders and food allergies/intolerances. My depression and anxiety have calmed down a lot since I cut out milk and wheat two years ago, and things have further improved since I started taking a multivitamin and extra supplements for nutrients I kept developing deficiencies in. I am not suggesting that everyone do this obviously, it can be very dangerous for someone in recovery from an eating disorder to make drastic dietary changes, but in my case the allergies/intolerances had been diagnosed by blood tests and it was necessary as my digestive system had virtually packed up. I have had a milk allergy since I was a baby (not all allergies cause anaphylaxis; I am allergic to milk but intolerant to all the other things on my list), and spent the first ten months of my life screaming because of the pain from the digestive problems it caused. I carried on eating it anyway as I got older and I often felt very nauseous and tired, but no one never made the connection. For seven years between the age of 9 and 16 I felt sick pretty much constantly and got to be a medical mystery. A large proportion of the neurotransmitters in your brain are manufactured in the gut, so it’s no wonder that people with digestive disorders often develop psychiatric and neurological disorders. Vitamin and mineral deficiencies are also associated with depression and anxiety, and poor nutrient absorption due to damage in the digestive system can contribute to this. My immune system and emotional stability have never been as good as they are at the moment, and I am sure that changing my diet and treating the deficiencies helped with this improvement.
My sensory problems are not so easily controlled. Basically, I am really oversensitive – in the physical sense, not the emotional. Everyone has a tolerance level for things like noise, temperature, tiredness…caffeine 😛 and mine is lower than most. When I was with my ex I would have to leave his gigs sometimes because they were so loud they actually made me cry – when everyone else in the room was fine. I get palpitations after drinking a can of coke (although IBS dictates that fizzy drinks are entirely out these days). I start feeling sick and faint before most people in hot weather. I can’t cope with crowds, I panic due to the sensory overload. I got hypothermia in the Millennium Dome a few years ago! It wasn’t exactly warm in there but I was wearing three layers and nobody else there was shivering so much they almost threw up. My ex used to say that he thought I should be rolled in bubble wrap so there was an extra barrier between me and the world. It pisses me off SO MUCH that most people seem to think that this oversensitivity is a sign of character weakness or of being fussy, but it is REALLY not. For example: I was in Barcelona on holiday, and it was really hot so I was wearing a new dress. It was a very pretty dress, but unfortunately it was made from some material which…I can’t really explain it, but it made my skin crawl. I went out in it and within half an hour I was in so much discomfort it actually gave me a panic attack and I had to go back to the hotel and change.
This isn’t the same thing as not liking the feel of something, it’s more like it throws my nervous system into chaos. The same thing happens when my mum turns the radio on in the kitchen while I’m watching TV in the living room. I have to turn the television off because it overloads my brain to have two conflicting types of noise going on like that. When I’ve asked her if I could shut the door to the kitchen she has come into the living room to see what I’m talking about and told me that it’s easy to hear the TV over the radio, that she doesn’t like being shut in the kitchen and I am being ridiculous. I’m not meaning to be selfish or difficult; I just can’t ignore unwanted stimuli like most people can. In that situation, if I leave the TV on, I can’t shut the music out and I am fully conscious of it, it makes me more and more anxious and feeling like I’m listening to someone dragging their nails down a chalkboard. It’s so hard to describe but it causes such intense discomfort it’s impossible to sit with.
This sort of thing really affects my functioning. I can’t multitask. If I’m talking on the phone I can’t do anything else at the same time or I end up unable to listen to the other person. If I’m studying I can’t listen to music or nothing I read goes in. If I’m writing a post on my blog it takes me three times as long if the TV is on in the background. My favourite activities are those which involve my senses and concentration as much as possible without overwhelming them. Driving, going to the cinema and solving puzzles like sudoku are the things that calm me the most. When I was learning mindfulness skills I quickly discovered that if I was asked to concentrate on one sense – such as looking at a picture or listening for sounds in the building – I couldn’t do it. I was willing, I did try, but my attention would fly off every two seconds and things didn’t improve even after a year of practise. In contrast, if more than one sense was involved in the task – if I was given something like a stone, which I could hold and feel and study the colours and textures and weight – then I could focus on that almost indefinitely without becoming distracted at all.
I am, however, my own worst enemy. I get almost as anxious at being understimulated as I do at being overstimulated, and I find it almost impossible to concentrate on one thing at a time if it’s not engaging enough cognitively. I often end up trying to do five things at once so I don’t get anxious and finding myself unable to concentrate on any of them. I had problems at school because sitting still for an hour just listening to the teacher was so understimulating sensory-wise that I would start feeling horribly trapped, panicky, itchy and generally psychologically uncomfortable. When I had a summer job at the age of 18 the experience of 4/8/12 hours of standing around doing nothing would make me feel like throwing myself through the shop window – not through boredom, through panic from not having anything stimulating enough to do to keep me calm. I would end up standing behind the sweet counter hitting myself with the toffee hammer to keep myself from having a panic attack. And this is the problem I face now, really.
When I was anorexic I didn’t have these problems to this degree. The anorexia dampened everything down, made it far more manageable and less overwhelming. It was like being constantly on valium. Being starved and malnourished does something physical to my brain which actually HELPS me to function. Of course it also ruins my health, destroys my desire to socialise, makes me obsess about food to the cost of everything else, gradually lowers my mood until I don’t care if I live or die as long as I weigh less tomorrow, and steals my personality, turning me into a scary skinny zombie. So I think this is probably not a good long term strategy 😛 But there’s no escaping the fact that this is why I was able to study endlessly when I was very underweight, and why I am having problems with my physics work now I am weight restored. It also doesn’t bode very well for my attempts at getting a job. I would actually go crazy in an office job, and I mean that literally, not in a spoilt-little-princess-doesn’t-want-to-work way. The lack of stimulation would fry my brain. I would end up constantly fighting the urge to hide in the toilets and hyperventilate or self harm like I did at school. I am not giving in to the eating disorder because that is a sticking plaster, not a cure, and not only that but it’s a sticking plaster that releases poison into your body and slowly kills you, to extend the metaphor to breaking point! But I am also not sure how I go about dealing with this healthily so I can be a functioning member of society. Yeah, sorry for writing this post before I have thought of a solution 😉 if it helps, I know what ISN’T the answer…
I have a feeling that this is a very convoluted post that nobody is going to get to the end of. It’s hard trying to put this sort of thing into words. But apparently these problems are common in people with eating disorders, so maybe some of you will be less confused and uninterested than I fear. Quick poll – does anyone else out there relate to any of this? Have you found anything that helps? That is, anything not involving food or lack there of!
Three good things about today:
1. Julie somehow made sense of my virus induced hypomania, which is kind of astonishing because I thought I was talking crap!
2. I MADE VEGAN MACARONI CHEESE FOR DINNER!!! This deserves to be in capitals, because it was YUM. I hadn’t ever seen a cheese sauce substitute that didn’t involve yeast, which I am also intolerant to, before Aisha posted this link a month or so ago. I made it for myself and my sister (obviously I had corn pasta instead of wheat!) and she really liked it too 🙂 Aisha, you are my hero! It was IBS in a bowl – garlic, cayenne, lemon juice and mustard were involved – so I will probably suffer tomorrow, but it was sooooooo worth it.
3. I only have two more questions to do for the physics assignment which is due in next Thursday, yay 🙂