Side effects

Had my third diagnostic interview today, some hopeful things, some sobering realisations, will write more about that soon. Need to write about something else for a minute.

Like I’m running a marathon.
(Although honestly, I have no idea what that feels like.)
Constantly out of breath.
Heart beating in my throat.
Palpitations. Randomly.
Can’t concentrate.
Tunnel vision.
Shaking hands.
Nausea.
Cold sweats.
Hot flashes.
Insomnia.
Restlessness.
Muscle pain in my thigh from unaccustomed stimming.
Meaning I’m jiggling my left leg non-stop now.

Dealing with people and sounds and lights is becoming more impossible by the day. I’m getting to the point where a trip to the supermarket leaves me gasping for breath for 10 minutes afterwards.

“Anxiety is a common side effect of giving up smoking.”

Is inability to function a common side effect as well?
It’s been two weeks since I quit. Hoping this gets better. Very soon.

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Rijsttafel

This is not going to be an actual recipe, but a description of a fairly typical Dutch thing called “Indische rijsttafel”. I’m not going to spend a lot of time describing what it is because there’s plenty of resources available for that. What I am going to spend some time on is explain why “rijsttafel” is a picky eater’s idea of heaven.

Eating out is always stressful for someone who has trouble deciding what he or she wants. This is not just “being difficult”, it’s the difference between a snapshot decision for a neurotypical person and an overwhelming multitude of equally valid choices for an autistic person. How do you decide? It’s not that easy. And what if you hate whatever you ended up choosing because everyone was staring at you and waiting for you to make up your mind? The social rules governing complaints about food are another minefield that’s nearly impossible to navigate.

This is why I love rijsttafels. In Dutch Indonesian restaurants, you sit down, someone decides how much money you’re willing to spend per person, there might be a few extra questions about what kind of rice everyone wants (white, yellow, fried, or sticky – easily solved by just getting every kind) and that is it. Next thing you know, there’s about 40 different dishes being served out. You can be as picky as you like and simply start by eating some rice, then if you feel confident or relaxed enough, try a very small spoonful of whatever looks non-threatening. THIS IS HOW EVERYONE EATS RIJSTTAFEL. It’s awesome.

So in case you ever get the chance to eat at a Dutch Indonesian restaurant, I thought it would be nice to show you some of the dishes that you may encounter.

Nasi Putih Nasi putih White rice. Think that’s fairly trigger free with regards to texture and taste. Unless you don’t like rice.
Nasi Goreng Nasi goreng Fried rice. Usually contains bits of egg (with omelet texture) and fairly easy to spot bits of cooked ham and leek. Can contain other things as well. Took me years before I could eat it, too many different textures going on.
Nasi Kuning Nasi kuning / koening Yellow rice. My favourite. Slightly sweet coconut taste but dry, not sticky.
Lontong Sticky rice cakes. You don’t see them very often. Fairly mushy, tastes of white rice and water.
Daging rendang Daging rendang Looks terrible, but it actually tastes brilliant. Slow cooked beef in a creamy lightly-spiced sweet coconut sauce.
Daging Smoor Daging semor / smoor Another one that looks terrible but isn’t. Slow cooked beef in a sweet-spicy soy sauce.
Daging rudjak / roedjak Slow cooked beef in a thick spicy sauce.
Daging Bali Daging bali Slow cooked beef (noticing a theme here?) in a very spicy sauce (made primarily with crushed chili peppers)
Satay Sateh / sate You guessed it, satay. Comes in several different forms, although the most common is chicken (ajam) with a medium spicy peanut sauce. Texture of the sauce is usually very smooth.
Sateh kecap / sate ketjap Same as above but instead of peanut sauce, it’s served with a spicy-sweet soy sauce, a bit sticky. Much nicer in my opinion.
Telor Telor Means egg. Can come in several varieties like “Telor Sambal Goreng” (the most common one, a spicy currylike sauce). I can’t stand hard-boiled eggs so I avoid them.
Sayur Lodeh Sayur lodeh / sajoer lodeh Several different vegetables lightly boiled in coconut milk. Usually contains cabbage, green beans, carrots, and bean sprouts. Sometimes also tofu or tempeh. I like it but wouldn’t recommend it if you don’t like slippery veggies.
Sambal Goreng Boontjes Sambal goreng boontjes My favourite vegetable dish ever. Green beans in a sort of coconut / chili pepper stew. But the green beans should still be chewy instead of mushy. Sometimes they get it wrong and then I’m really disappointed.
Atjar Pickles. Atjar tjampoer is mostly cabbage and carrots, and atjar ketimoen is mostly cucumber. Vinegar which means I stay away from it, so no idea what it actually tastes like.
Tempeh goreng A pressed soy bean product. Cut in small pieces and fried in a spicy sauce. Very peculiar, sort of sticky texture, spicy and sweet taste. I really like it.
Krupuk / kroepoek Prawn crackers. Can be a bit odd at first because the air bubbles in the crackers sort of suck on your tongue. OK, that sounds weird. But it is actually quite a funny feeling. Like cheese puffs.
Seroendeng / serundeng Toasted shredded coconut with sugar and spices
Pisang goreng Battered and deepfried banana. Nothing wrong with that.
Spekkoek Cake made out of extremely thin layers of vanilla and a sort of spice cake batter. Moist and sweet, but not overly so. Texture is almost like pancakes. If you are not so sure about wanting to try Indonesian food, at least try this. It’s spectacularly yummy and it’s a lot of fun trying to peel the layers apart even though other people will think you’re weird for doing that. But who cares. 😉

A day in the life

9:15am
That’s nice. Cat has allowed me to sleep in for a change.

9:20am
Get dressed in clothes I remembered to pick out yesterday evening (based on criteria of cleanliness and making me feel confident and pretty enough to go to outdoors festival thing). Feed cat. Check to-do list and remember to put on deodorant.

9:28am
Make tea and remember to have breakfast. Yay me! Another item off my to-do list.

9:35am
Spend 5 minutes agonising over what to do with my hair. I should have made an appointment at the hairdresser’s about 2 months ago. At least I took a shower yesterday so don’t have to worry about hair also being greasy.

9:45am
Check bag for necessary items (purse, keys), put jacket on and go to bicycle shop. I want to exchange the second-hand bicycle I bought there for another one because I don’t like the tires on this one, they make me fall over when I try to turn a corner. I should have done this the week after I bought it. It’s now been 3 weeks.

9:47am
Discover the bicycle shop is still closed. This upsets my schedule. I need a bike before 11:00am.

9:52am
Nice man from launderette next door notices my trundling back and forth and tells me bicycle man is on his way.

10:03am
Bicycle man arrives and I explain why I’d like to exchange the bike I bought from him. He asks me for the receipt. I reply that I’ve lost it but if he needs it I’ll go back home and look for it, no problem, I understand, I’ll go home now then? I think my voice sounds fairly panicky. He says it’s ok, he remembers selling me the bike.

10:23am
Finally manage to choose one bike from all the ones he has for sale. I should take my time and consider all the options but I feel like I have to make a choice. And this one looks nice and it’s more expensive than the old one which sort of makes up for my guilt about returning it weeks later and without a receipt.

10:26am
Get home and realise I’m 34 minutes ahead of schedule. Make more tea and read some blogs.

11:03am
Look at clock and notice I’m now running late. Oh bugger it. Check bag for necessary items (purse, keys, phone, sunglasses, sunscreen, deodorant, scissors, plasters). Tell cat goodbye and cycle to train station on new bicycle.

11:10am
Spend next 10 minutes trying to wrestle bicycle up and down train station staircases to get to correct platform. Luckily the 11:25am train is late.

11:25am
The announcer says something something mumble something 11:25 train to Amsterdam will depart mumble mumble. There really are a lot of people on the platform. Why can’t they shut up so I can hear what the announcer says? Panic slightly, then tell myself fuck it, if train departs from a different platform I can simply take the next train. Relax.

11:32am
Train arrives. I’m not going to be in Amsterdam at 12:00pm. And I don’t have a hand free to text or call my friend to say I’m running late, because the train is super crowded. As in, we’re standing on the balcony. With three bicycles. One lady in a wheelchair. 8 Spanish tourists. And a very loud hen party, 3 of whom are trying to find the toilets.

Empty train balcony (photo by Recensiekoning)

11:57am
Arrival at Amsterdam Central Station. I’ve reached the point where every time one of the hens screams, I screw my eyes shut and hunch my shoulders. I know this makes me look like a nutter. I don’t care. I just want to get off. When the doors open I manage to hoist my bicycle out without tripping, falling down the gap between the train and the platform, crashing into someone else, or making a complete idiot and/or nuisance of myself. Victory.

12:04pm
Realise that my headlong flight out of the station has been in vain, because I need to go back in and find an ATM. Fuck. Do I have to?

12:12pm
Finally on my way. Bliss. Sunny weather, bicycle. I’ve lived here long enough to know the fastest ways to get somewhere, but also the quietest and most scenic ways. Guess which one I’m taking. It’s beautiful out here.

12:24pm
Arrive at beer festival location which is a farm out in the middle of nowhere. Not that many people here yet, which is why I wanted to get here early. Lots of choice in food and beers. Start feeling panicky again because there is no leaflet listing where to find what. I don’t like having to make a choice while people are looking at me expectantly. I don’t know what I feel like having. I end up having a low alcoholic beer from the last stall in the line up because it’s set up under a large tree and the dappled light is soothing and they look like nice people and I don’t want to walk back because people might think I’m being rude. Their beer turns out to be very nice.

12:30pm
Friend arrives! I always feel less conspicuous in company and this is a close friend who knows I’m dealing with the autism stuff right now and who is the first of my offline friends to know about this blog.
*waves at offline friend*
Spend next hour or so just talking and trying out food and beers. Having fun! Also take some new pictures for blog header.

14:00pm
Small anxiety spike because ex shows up. I get along OK with ex but he always says very rude things about good friend. I don’t know how to deal with that. Decide to try and focus most of my conversation resources on friend and not worry about being rude to ex, because tough titty.

14:30pm
More people arrive. Another good friend joins group. Getting more crowded. Still having fun though. Although the music is a bit distracting. Maybe I should pace myself. But I’m having fun!

15:00pm
First friend has to leave because he’s having people over for dinner. Awww. It’s now getting so crowded that someone has to stay with seats at all times to prevent them from being taken by others. Sun is also getting very hot. Decide to move to a quieter spot with ex and other friend. Turns out quieter means less crowded, but louder music. Still having fun though!

16:00pm
Can’t remember much from this point on. People. Sunlight. Music. Talking everywhere.

17:00pm
Realise I need to go home. Well, should have gone home about 2 hours ago. Another friend is here and he’s doing this spiel with my ex about therapists saying I have no right to decide what’s best for me because well, autism obviously means I’m not capable of coherent thought and it’s really funny. But I notice my responses are getting flatter. So I should probably head home.

17:35pm
Actually say out loud to my friends that I should probably head home because I’m getting tired. Say goodbyes.

17:50pm
Cycle back to train station. Still gorgeous weather and gorgeous scenic route. Very nice. More traffic on road though. Have to pay attention.

18:04pm
Decide that it’s more practical to leave my bicycle across the water because that’s where I can pick it up when I cycle to work. Take the ferry behind the station to drop off my bike on the other side. Am fast enough locking my bike that I can take the same ferry back. Score!

18:24pm
Take more pictures for blog header. Realise I’ve just missed the train back.

18:36pm
Next train arrives. I get a seat to myself. Not for long. Two minutes later I get joined by four boisterous males in their early twenties. I know this because they proceed to talk about their own ages, the ages of the girls they could be dating, and the age of the boys their sisters are dating (one of the sisters is dating a Russian who is 5 years older than her and whose parents have a speedboat and a dacha on a lake somewhere), for the next 25 minutes. I feel old when they start talking about a girl born in 1996. I’m honestly trying not to pay attention and to concentrate on what I’m reading. But I can still recall most of their conversation a day later. It isn’t even interesting. How fucked up is that.

19:02pm
Thank god I can get off the train. Oh. Just thought of something. Bugger. Because I took my new bike to the station this morning, and that new bike is now in Amsterdam so I can use it for my work commute, I don’t have a bike here at the station to get home. Will have to take bus. Bugger McBuggerypants.

19:03pm
Call friend in UK while walking to bus station because this is usually a good time to reach him. Talk on phone for what probably amounts to an hour. I think. Somewhere in that time I must have gotten on a bus and got home. No idea what time though. I think I might be talking too loudly on the phone. In English. People probably hate me. I always hate people who talk too loudly on their phones when on the bus. And instead of talking about my day so I can start calming down, I talk about all sorts of things that are among my special interests right now and I’m getting more and more hyper by the minute.

20:10pm-23:00pm
No idea. Complete blank.

23:00pm
Realise I’m really really tired. Go to bed. Read for half an hour, then turn off lights.

00:15am
Still awake.

2:00am
Still awake. Images from day still going through my head. Reliving conversations. Not in an anxious or worried way but I keep going back to things. Can’t let it go. So tired.

2:15am
Give up trying to fall asleep and start reading book again.

4:15am
Turn lights off again. Fall asleep.

5:30am
Wake up again. Go downstairs to get some water. Fall back asleep after about 10 minutes.

7:02am
Get woken up by cat biting my foot because his food bowl is empty. I love my cat. Honestly.

Shame

This article has been reprinted with permission on We Are Like Your Child.

I want to test a theory. The theory of shame going away when it’s out in the open.

I seem to have this thing. Which could or might possibly be related to decreased pain sensitivity. Or maybe executive function.

I don’t feel my bladder getting full. Usually the first signal that really gets me to pay attention is “bladder completely full cannot hold it need to find toilet within next 30 seconds!” Mad scramble for toilet ensues.

That or peeing myself.

© Bartlomiej Zyczynski – Fotolia.com

I’m 36 years old. I’m a pretty successful career woman (I can still bluff my way around the gaps in my resume). I have bought a house on my own (mortgaged of course, but still). I have a small but close circle of friends. I’m close with my family. I’m highly verbal. If I wanted, I could easily be seen as a shiny Aspie.

And the last time I peed myself in public was 6 weeks ago. And I don’t mean a few dribbles. I don’t mean “bit of incontinence, here’s some Depends”. I mean not being able to stop until my bladder is empty. Thank god this time the train platform was fairly dark and I was wearing a skirt so only my shoes got soaked. Made a nice squishy sound when I walked away from the puddle in the hopes that nobody would see.

Have I forgiven myself for not being able to feel my bladder until it’s bursting? Oh, years and years ago. It’s just a thing that happens. I can’t do anything about it except frequent toilet breaks even when I don’t feel like I have to go, and sometimes I simply forget to do that. It’s part of being me.

Do I still feel absolutely mortified when I pee myself in public? Does telling this story make me cringe? Did anyone here reading that story feel embarrassment on my behalf? Or even disgust?… Yeah, thought so.

But I’m glad you listened.

Edited to add some background:
When I wrote this, I was incredibly angry. Angry at the idea that shame was just some silly notion that would disappear as soon as it got examined. So I wanted to prove that there were some things that would not be less shameful when brought out in the open, because it wasn’t irrational to feel ashamed of them. That it was actually
normal to feel ashamed for wetting myself as an adult.

But now I feel pride. Pride that I had the courage to come out and admit that there are some things that will always be a problem for me. Pride that I was asked to publish my story on We Are Like Your Child, which is a blog full of articles by bloggers I very much admire. And pride that maybe, just maybe, someone else out there will read this and find some consolation and courage in here too. Bless you all. Wetters and non-wetters alike.

Guess that means I'm doomed ;-)

Guess that means I’m doomed *giggles*

Simple non-icky vegetable soup

I used to be a very picky eater. Very. Between the age of 9 and 14 I only ate unsweetened yoghurt with granola (but only if it wasn’t too crunchy), spinach (but only if it was finely chopped and no cream added), toast with a kind of carpaccio (but only very thin slices without obvious rims of fat or sinews), and toast with margarine and semi-sweet chocolate sprinkles. I gradually branched out, but by the time I was an adult, the list of things I simply wouldn’t eat was still a mile long.

Only after I moved out and learned how to cook for myself did I start to appreciate foods that I’d never in a million years thought I’d like.

Example: onions. Horrible slithery things. I could always tell them apart from the rest of the food, even in a stir-fry or a stew. Soup was even worse. They seemed to float to the surface, waiting until I put my spoon in, and then ambushing me so I could never have a spoonful of soup without an onion in it.

When I no longer had someone putting onions in my food and telling me I wasn’t allowed to pick them out, I could relax and start to experiment with onions. First by cutting them in really really really tiny pieces. TINY. Cutting up one small onion easily took me 30 minutes. But that was ok. Nobody was staring at me. Nobody was making me eat it. If I didn’t like it, I could throw it out. The pressure was off.

And I found I actually quite liked onions. When they weren’t slithery.

To honour non-slitheryness, here’s my first recipe. It’s a very simple lightly creamy soup with not too much going on, taste or texture wise.

The main problem here is the beef ragout. This is not ragu, as you can probably tell from the picture. It’s a mixture of beef stock, flour, and gelatine. I have no idea whether it’s available in other countries. The reason I added it is to make the soup a bit thicker and creamier so that the contrast with the texture of the vegetables won’t be as big. So you can also use another thickening agent like cornstarch if you have no idea what beef ragout is.

Ingredients

  • 1.5 litres (6 cups) of normal tap water
  • enough powdered stock for 1.5 litres (6 cups) of stock (in my case, 3 tablets)
  • 400 ml (1.5 cups) of beef ragout OR thickening slurry
  • 0.5 courgette (zucchini)
  • knife
  • whisk
  • 2 litre (2 qt.) soup pan

Preparation

If you are going to use a different thickening agent, prepare this first.

  1. Take the soup pan, add the water, and bring it to a boil.20130731_175851
  2. Dissolve the powdered stock in the boiling water. This takes about 5 minutes.
  3. Turn the heat low and add the ragout or slurry.
  4. Stir a bit. Don’t worry about lumps. Keep it simmering on a low heat.
  5. Cut the courgette in slices (as in the picture above).
  6. Stack a couple of slices and cut them in strips. Repeat until all the slices are cut.
  7. Get the whisk and vigorously beat the soup to get rid of lumps.
    If you’re clumsy like me, you might want to turn off the heat first and let the soup cool down a bit before whisking.
  8. Whisk some more. You really don’t want any lumps.
  9. Add the strips of courgette.
  10. Heat up the soup for 2 more minutes. The courgette should be warm but not cooked.

Serves about 4 people. Nice with toast or bread sticks.

The idea behind this soup is that the courgette stays firm instead of becoming gooey and slithery. Also, the strips are easy to see and don’t ambush your spoon. Courgette doesn’t have a very overwhelming taste and the texture is nice when it’s not cooked. At least in my opinion.

Paying attention

IMPORTANT. READ THIS FIRST.

In this post, I’m going to be looking at biological stuff. After I finished writing, I realised that this could be easily read as advocating for a “cure” for autism. Nothing could be further from what I want to say. I don’t want to be fixed or cured. “Cure” thinking has done and is still doing so much harm to autistic people, that it almost stopped me from publishing this post.

However, I think the link between depression, ADHD, and autism could still do with some examining. Maybe we’re all part of a really broad spectrum. Maybe we’re all differently wired in a similar way. Maybe we can be who we are without feeling horrible or being made to feel horrible about it.

Maybe we aren’t alone.

© fotovika - Fotolia.com

© fotovika – Fotolia.com

In an earlier post, I wrote about how important it is for me to do things that activate my reward centre. I speculated that the lack of achievement in housekeeping was the reason my reward centre wasn’t lighting up with nice juicy dopamine, and so I didn’t have enough motivation to do any regular housekeeping. This is how recreational drugs work, and sex, and food, and any other pleasurable activity: they increase dopamine levels which in turn activate your reward centre.

The reason why I was thinking about rewards and dopamine is because since about the beginning of June, I have been really struggling in several areas of my life. I started a new job after being unemployed for 10 months, I decided to quit smoking, and I got referred to a mental health clinic for an autism diagnosis. Maybe a bit too much to cope with all at once.

But was that all?

Normally I feel pretty damn good whenever I manage to actually do something, even in my bleakest moments. Look, I did the dishes! The rest of the house is still a mess and I haven’t paid the bills in over two months, but screw that, I did the dishes! I’m awesome! Now, that sense of pride seemed oddly muted. Was this depression? It didn’t seem to be, I was feeling very overloaded with work and smoking and autism but not necessarily sad or down. Overwhelmed, unable to deal with sensory stuff, pretty normal for me in that kind of situation. The muted feeling was new.

And then I made a brain leap. That’s how it felt. My brain jumped up and landed in a different spot. A spot labeled “dopamine”.

You see, I was a very heavy smoker. Think 45-50 cigarettes a day. So when I decided to quit, I asked my GP for varenicline because I’d heard good things about it and figured it would be the support I needed in overcoming my dependency. It worked like a charm, the first day I used it I was down to 23 cigarettes and after 5 days I smoked about 8 a day. Instead of 50. And it didn’t cost me ANY effort. I just didn’t feel the need.

How does this work? Well, nicotine, like other addictive drugs, makes your dopamine levels peak. So there’s an instant reward when your nicotine receptor gets activated. Varenicline prevents this reward by making the nicotine receptor less sensitive, and at the same time mimics a low level of dopamine so you don’t go cold turkey.

So I was weaning myself off my dopamine addiction. And lowering my overall dopamine levels.

And suddenly I didn’t like alcohol as much. I didn’t pay my bills. I couldn’t keep my house clean. I hid in my bedroom. I bought things I normally never eat, like crisps and chocolate and cakes. I had a very low threshold for loud noises and bright light. I nearly broke down at the thought of having to take the train to work. I couldn’t focus on my work as easily as I used to do. I began compulsively refreshing my Facebook feed and email and rapidly switching from one browser tab to the next. I started stimming heavily (whereas I could have sworn I didn’t ever stim. Nope. Not me. Not stimmy at all).

I started thinking that maybe there was a blog post in this. So I looked up dopamine on Wikipedia, googled some stuff. And then I stumbled onto this.

We usually think of dopamine as a chemical messenger that is related to things like reward or drug addiction. But more properly, dopamine signaling has to do with salience, how important something should be to you at any given time. Dopamine spikes are associated with the pleasure of drugs or good food or sex, but they also say “PAY ATTENTION TO THIS”.

This is from an article called The Dopamine Side(s) of Depression and it looks at several behavioral studies done with mice to look at how dopamine works. Go read it. It blew my mind.

Because besides the “Pay attention to this” effect – which I’m starting to think could be part of why sensory processing disorders, for example difficulty to filter out background noise, occur so often in autistic people – the research also looked at the role of dopamine in social defeat stress.

You take a normal mouse, and put him into a cage with a bigger mouse. The bigger mouse “owns” that cage. He’s a retired breeder and very aggressive. He will usually launch himself right at the poor intruder mouse, beat him pretty badly, resulting in a “social defeat”. The mice are usually separated very quickly so the larger mouse doesn’t injure the intruder, but the defeated mouse is partitioned off in the case, where the aggressive resident can still threaten and bully the poor guy.

The mice that were given high level dopamine stimulation showed signs commonly seen in 10 day social defeat (less social interaction with other mice, less inclination to engage in pleasurable activities)… after only 2 days.

Let me repeat that for you. The mice that were bullied and beaten up showed signs of depression MUCH FASTER after giving them high levels of dopamine.

Are we on to something here?

Depression. Hyperfocus or the lack of focus. Unable to filter sensory input. Decision making (assigning priorities). Even motor skills are commonly linked to dopamine.

But social behaviour is a new one for me.

Can autistic people simply be part of the large group of people who are differently dopamine-wired?