Wednesday, 9 March 2022
He was my third rheumatologist since we moved here (I know, less than 2 years ago) and my frustration mounts with every time I encounter that what bothers me most about the Netherlands: hokjesgeest. How to translate hokjesgeest? Geest means spirit and a hokje is a small cage or cubicle - it suffices to say it embodies the exact opposite of thinking out of the box.
Hokjesgeest is what made us flee Dutch education, where at a very young age children are tested, labeled, and pigeonholed accordingly. It also reigns supreme in Dutch medicine, where doctors can’t help any patient without a proper label. A label you only get if you pass a stringent checklist. I spent a frustrated decade in the Dutch medical mill, until I moved to the UK and swiftly got diagnosed by a British rheumatologist that admitted my condition wasn’t ‘classic Ankylosing Spondylitis’ (AS) but who also said ‘auto immune diseases are very complex, and we don’t understand them completely. Your SI joints are inflamed at the moment which matches best with AS.’ The look of confusion on my Dutch doctors’ faces when the Brit uses the terms AS and RA (Rheumatoid Arthritis) alternately in his reports says it all.
The Dutch doctors with their checklists, procedures and labels make me long for the more lackadaisical British, as well as the pill pushers of Singapore. I have to admit that doctors in Asia have a tendency to overmedicate, but this quote from my Singapore doctor resonates with me still: ‘We like to also help less extreme cases with advanced medication. This will not only improve the patient’s quality of life, but also stops the disease from escalating until it is too late.’
Let me stress my Dutch doctors were not bad people. They were friendly, smart and knowledgeable people. Mostly. The first Dutch rheumatologist said my sicca symptoms (dry eyes, mouth and well, dry everything) were not a part of AS, though she admitted they were common with RA. But I did not have that, I had AS. Hence could not have sicca symptoms. When I disagreed, quoting medical research, she replied: ‘Everything you read online is not true.’ For the record, I had not been reading quacksunited.com, the website I consulted was from the national rheumatoid association.
The second Dutch doctor measured and confirmed the sicca symptoms, then uttered this confounding line: ‘If you look online you will find that in many countries, doctors would suggest you have Sjogren Syndrome, but in the Netherlands we have a stricter definition and I can’t diagnose you with it.’ He was a Sjogren specialist, and that was it for him.
The third one, an AS specialist, made me feel optimistic when he said that sicca symptoms were common in AS patients. But down the line, he ended up being the one dumping me.
When I asked him to prescribe the medication that helped me in the past, he told me no. I did not comply with the checklist for it, he would never get the paperwork approved. When I asked him, just to satisfy my curiosity, to put bureaucracy aside, and tell me if he personally felt the medication could help, he got very uncomfortable. He said he did not have enough experience to answer that question because ‘we don’t do that here in the Netherlands.’ This is one of those conversations where afterwards I had a lot of retorts. ‘But you gain experience only by doing!’ and ‘Don’t you read international journals or talk to fellow doctors abroad?’
At my last consult he said: ‘The rheumatoid diseases that we treat are like the tip of the iceberg. There is a whole lot of them under the sea that we don’t see.’ There was no room for me on his lifeboat. He sent me back to the GP to see if another doctor can figure out what can be done against the pain that he agrees is most likely caused by a disease he specialises in.
The one health care professional that I feel understands my body, that helps me, is my physiotherapist. He does not look at scans, nor blood tests. He looks at me. He feels. Unlike my last rheumatologist, who I only saw in person once (consults are done over the phone these days), he sees me every two weeks. He listens to me and his advice is always spot on.
Pondering my medical journey, I have one final fun quote for you. The medal for the most hilarious thing a Dutch doctor said to me goes to an interim huisarts (GP) I saw in the early onset of my disease, who spoke the unforgettable words: ‘Why don’t you come back when you feel better.’ I’ve never been more speechless. She did not even mention paracetamol.
Thursday, 20 January 2022
We get our vitamin D from tablets and a sunshine lamp I purchased online. And to top off all the fun, we are in a lockdown. Blue Monday this year stretches into a long, blue month…
Unsurprisingly, the kids scream for soul food, to be precise: chicken soup. So I defy my resolution for a vegan January and succumb. What we need is Soto Ayam Indah!
The bright yellow turmeric used in this hot chicken soup should lift our hearts out of the blue. To my shock, I realised I never posted the recipe here. An omission that ought to be remedied fast, so you can all enjoy its super powers. Indah means beautiful in Indonesian, and that is what this soup is. It is also the name of the woman who worked for us in Singapore and whose cooking was famous amongst all our friends, the woman who spend many a night perfecting her recipes to get the flavours exactly right. We miss her just like we miss her soup and the sunshine.
Quantities are never specific in Indah's (or my) recipes. This is because spices vary in quantity and strength, so tasting as well as gut feeling is required. I prefer to err on the side of too much spice, feel free to adapt the recipe to your own taste.
Soto Ayam Indah
For the stock:
1 whole chicken, washed and roughly chopped in pieces
2 salam leafs
2 kaffir lime leaf
2 stalks serai (lemongrass)
3 cm lenguas root (galangal)
1 celery stalk
1 green onion stalk
Coarsely chop the spices. Put all ingredients in a large stockpot and cover with water. Add salt to taste and bring to boil. Cover and let simmer for about an hour.
While the chicken stock boils, you can make the spice mixtures, the rempah and sambal, as well as prepare the other accompaniments thar are essential to this dish. Rempah and sambal are both spice pastes, the main difference being is that rempah is used in cooking where sambal is served on the table for everyone to add on the plate.
6 kerimi nuts (candlenuts)
2 cloves of garlic
handful small shallots
5 cm fresh turmeric
1 ts white pepper
In Asia shallots are tiny and you can use a small handful. In Europe they tend to be bigger and 1-3 would suffice. Grind all the ingredients together (you can add some oil or water if your blender needs that) and fry the paste in a little oil until it smells fragrant, just a few minutes. Set it aside for adding to the soup later. If you want to go old school, use a grinding stone, some say it improves flavour.
For the sambal:
2-8 red chilis
2 cloves of garlic
Chop all coarsely and boil together for a few minutes until soft. You can vary the amount of chili and tomato based on how spicy you like your sambal. Then grind or blend everything together into a paste. Season with salt. Set aside in a bowl to serve on the side later for those liking some extra heat.
After the chicken has boiled, take it out of the stock. When it is cooled down a little, pull the meat off the bones. Here I tend to deviate a little from Indah’s recipe, as I like my stock strong-flavoured. I put the bones back in the pot and simmer them a few hours more, creating a fragrant bone broth. You don’t want to boil your chicken meat that long, as it would lose all its flavour. In the meanwhile, as your broth bubbles away, fry the chicken meat in a wok until crispy, let it cool a little, then pull it apart into small pieces and set aside in a bowl.
Indah always serves the soup it straight up, with floating herbs and all, but you can also choose to strain it. Either way, make sure to remove any chicken bones if they are there!
Now add the rempah to the stock, then bring it to the boil again. Add 2 tomatoes sliced into quarters, some stalks of green onion, and chopped local celery leaves. Don’t leave it to boil long now, just heat it thoroughly and serve hot!
Serve the stock with all the toppings, which I like to lay out on the table for everyone to help themselves: boiled beehoon noodles (you can also serve rice on the side instead), crispy fried shallots, boiled (quail) eggs, lime slices, quickly blanched tauge (bean sprouts), blanched Chinese cabbage, more shreddedcelery leave and green onion, the sambal, the shredded chicken, and some kechap manis (sweet Indonesian soy sauce).
Thursday, 14 October 2021
Like many fellow sufferers I am a master of disguise. My husband complains the rest of the world gets to see the cheerful me, active and full of spunk. He gets the moaning, grumpy me that lies on the sofa and groans about the loads of laundry that – literally – break her back. That shouting monster that is hiding behind the smile. I’ve tried explaining that he should take it as a compliment that he gets to see the ‘real me’ – but of course he is right. The most important people in my life, my family, deserve better. That terrible creature should not be the real me. It is just so darn hard.
The last few weeks I decided to try a different approach. I’d throw off the mask for everyone. My first instinct when someone asks ‘how do you do?’ is to say ‘fine,’ even when I’m not. What would happen if I told the truth? The result was shocking. Shocking in its absence. Do people find it awkward to talk about these things, or do they just don’t care? Or was my answer too jokingly given, my consequent shrug too distant?
It doesn’t help to have a disease with a name nobody can remember or spell, not even me. In English, it’s Ankylosing Spondylitis, in Dutch Bechterew disease (officially they changed it to Axiale Spondyloartritis or SpA, so now it has two names, even more confusing). Even rheumatologists barely understand this highly complex disease that manifests itself with a long parade of constantly changing symptoms. If you visit several doctors you get as many opinions. Every time I move, my new doctor questions whether I actually have it, only to grudgingly admit, after many tests, that I do, indeed, have it. Even if my symptoms are not ‘classic,’ apparently. The first symptom people think about with arthritis, an auto-immune disease that attacks your joints, is pain. What many don’t understand is that another symptom can be a lot more debilitating: Fatigue. A symptom so vague even doctors rarely take it seriously.
Moving to a colder climate has been hard. I miss the heat that warms my achy joints. I miss the humidity that makes I don’t have to use eye drops several times a day to see clearly. I miss the sunshine that melts away the cobwebs in my head. I miss the Asian masseuses that knead away my stiffness. I miss my lovely fulltime household help. The cold brought new symptoms that my immune system repressing medication cannot fix. Arthrosis in my hips, sicca symptoms (a drought all over my thirsty body) and the ones that are the hardest ones of all to talk about: mind fog and depression. Now autumn is in full swing, getting out of bed in the morning gets harder every day. My body just doesn’t see the point.
Thankfully I manage every day, one step at the time. I focus on the good things of living here. Being close to family, seeing friends I hadn’t in a while. Exploring the Netherlands and Europe, meeting new people. Things that give me energy. What can be hard to explain (particularly to my own husband) is that the best way to fight depression and fatigue is to get active. A day in the office supporting refugees might make my body total loss, it also gives my sense of self an essential boost. A morning of caring for baby hedgehogs shows me there is a point to my life. Joining events at my children’s school makes me feel I am part of their lives. Planting a food forest gives me hope for the future. Without all of that, who am I? Lying on the sofa might rest my body, but it stiffens my joints, and worse, my soul. I simply cannot do it.
My new novel has been on ice all of last year, as has this blog. Is it energy I lack to write or something more fundamental? A question I can’t easily answer. In the end, it is all about balance. Prioritising. Invest in things that make me happy rather than wear me out mentally. So that is my new year resolution for the coming winter, because as I said before, why link those things to a date?
Just one question remains: who will do all that laundry?
Friday, 23 April 2021
For April weather is extremely treacherous. It fools you into believing spring is here, so you take off all your layers and run outside, and minutes later will whip a hailstorm around your ears, laughing. There is a saying in Dutch ‘April doet wat hij wil’ (April does what it wants) and I've never seen that as clearly as this impetuous last month. I realise now why Dutch people always talk about the weather. There is so much to talk about. Also, my mood seems to be directly linked to the amount of sunshine I get to see in a day. That jar of synthetic vitamin D tablets only goes that far. On the upside, most trees still don’t have any leaves, so at least those scarce rays of sunshine don’t get blocked.
Spring beauty is not only fragile but fleeting. Soon after opening the cherry blossoms twirl from the trees again, like snow. The daffodils I planted lightened up our front garden for a few weeks but slowly wilt away already. I keep forgetting things I was supposed to do in this season, time goes so fast. Before you know it, summer will be there, then autumn and god forbid, winter again.
Which means we have to enjoy it while it lasts. I need to get up from behind my laptop, drag my kids from their screens and take them into the dunes. The sun is out, the air is fresh. Slowly, I am warming to this concept of seasons. As long as the sun shines.
Monday, 7 December 2020
Over the last months people have laughed at me in my thick scarf, woollen hat and gloves. ‘It isn’t cold,’ they’d grin. ‘Just you wait until winter really starts.’
A few weeks back we were stuck without heating for a weekend and now, in the chilling wind and drizzle, the new heating system struggles to keep our old, leaky house as comfortable as I’d like it to be. So what can one do to heat up? Cook warming, spicy, Asian food! I spent our last year in Singapore painstakingly noting down recipes for Indah’s amazing Indonesian food, and when we miss her, miss the sunshine, we cook it and warm our chilly guts. I get many requests to share Indah's recipes - her cooking was famous amongst family and friends, and not without reason: her food is amazing.
|Foraging Singapore for wild greens|
The soul of any curry is the rempah, or spice paste for the gravy. This particular one is a base you can use for many different varieties of vegetable curries. It’s a great dish to empty your vegetable drawer as most things work. In Singapore we would go and forage for our vegetables: tapioca leaves, moringa, jackfruit, tiny round aubergines. But for lack of those, kale, carrots or green beans work just as well.
We are lucky that the Hague boasts a large community of Indonesian people, so most of the ingredients are available easily enough. Although the only place that sells fresh (well, frozen) galangal is half an hour drive away, so I do sometimes resort to powdered. And I really don’t understand why all the crispy fried shallots here are made with wheat flour (which I’m intolerant to) when in Asia they never are! If you can get fresh ingredients, do so, but with dried spices this dish will still be nice. Candlenuts (kemiri) can be replaced by macadamia or brazil nuts.
Rempah (spice mix)
8 small (or 3 bigger) shallots
3 cloves garlic
2 or more chilis (mix large ones for colour with small ones for heat)
3 cm fresh galangal
3 cm fresh ginger
2 stalks lemongrass, hard outer leaves discarded
3 cm turmeric,
1 teaspoon shrimp paste (belachan in Malay, terassi in Indonesian)
1 tbs dried shrimp
As with all Asian recipes, quantities are indicative, kira kira. Indah’s original recipe that she wrote down for me just has a list of ingredients, but I added some indications of how much to use because I know working intuitively is difficult if you are less familiar with these spices. Based on the strength of the spices you use and your personal taste, use more or less of each. If you use dried, about one teaspoon of dried spice roughly equals 3 tablespoons of fresh.
Chop all rempah ingredients coarsely and blend them to a paste. Add some oil and/ or water if needed. I do this in a bender, if you are a traditionalist you can use a grinding stone or pestle and mortar.
Fry the spice mix in large pot with thick bottom until fragrant, five minutes should do it. Add your vegetables (see below for some suggestions), a few cups water and bring to boil. You an add more water later if it gets too dry, you are looking for thin curry/ think soup consistency. Add some salam leaf, kaffir lime leaf, and salt to taste.
Boil 15-20 minutes then add coconut milk, about 400ml should do it. If you use fried tofu, add this only at the end. Sprinkle with crispy fried onion. Sayur lodeh can be part of a nasi campur or rijstafel, a selection of different dishes served together with rice and spicy sambals. But for a simple weekday meal it is fine on its own served with rice.
As I said, you can throw anything you like in this gravy, but I’ll share two classic versions that I love.
|Singkong lodeh is even better the day after as leftover lunch!|
|Classic sayur lodeh|
Classic Sayur Lodeh
The best known version that is served over Indonesia usually contains a mixture of green beans, carrots, aubergine and cabbage as well as cubes of fried tofu. It is the one that can be seen in the picture of the rijsttafel above right in front.
Wash and chop the vegetables into bitesize pieces, then blanch them briefly - be careful not to overcook, they still need some crunch at this stage. You can either buy ready fried tofu puffs or fry cubes of firm tofu in oil before adding them. Add the tofu to the curry at the end only, and boil until thoroughly heated and the tofu has soaked up all the flavours.
Traditionally this pudding is made on stir-up Sunday, the last Sunday before advent, but my Dutch brain can’t do Christmas before St Nicolas has left for Spain, so just after the 5th works well for me. For luck, the whole family is supposed to take turns stirring!
Festive Pudding for all
900 g mixed dry fruit, chopped fine
100 ml liquor (brandy, or for non-alcoholics use fruit juice)
3 ts mixed dry spices (nutmeg, cardamom, cinnamon, allspice, ginger)
1 ts baking powder
pinch of salt
100 g chopped nuts (almond, macademia, walnut)
175 g dark sugar (palm sugar, or any other)
sugared lemon/orange peel
175 fat (suet, coconut, butter)
100 g flour (can be wheat or glutenfree)
225 g breadcumbs (can be glutenfree)
300 ml liquid (apple cider, fruit juice, sweet wine, port, sherry, dark beer)
The heart of the pudding are the dried fruits. Ironically for a pudding often called ‘plum pudding’ plums, or their dried version prunes, are not necessarily included, but they do work well. Raisins, currants and sultanas are your obvious choice, but I love dates, apricots, cranberries, apple, and dried mangos as well. There are really no limits. I’ve done a tropical version once with pineapple. Whatever you choose, dose them in brandy or your liquid of choice and soak overnight.
(I’m suddenly thinking up a gin & tonic themed pudding, well, there’s always next year… this year I opted for Middle Eastern with dried limes, apricots, mango and lots of cardamom)
For the fat, make sure to use one that is fairly solid, so olive oil is out. Even in the UK the traditional suet is getting harder to get (particularly if like me you boycott the nasty supermarket ‘vegetarian’ version of chemically hardened palm oil covered in wheat flour) If you want to be proper, do ask your butcher for suet, but by all means butter or coconut fat work perfectly fine too .
When the fruit is ready, add all the dry ingredients together in another bowl, then add the fat, eggs and last your liquid of choice. When mixed well toss the dried fruit in as well, let everyone have a stir and your mixture is ready to steam. All you need now is patience.
My first puddings I steamed in a earthenware bowl with some parchment, but water leaked in and they became soggy, so I invested in some plastic pudding bowls with lids. Place them in a pan with water, that does not reach the top of your bowl, as no water should get in. Add a lid and steam them for hours, at least five; the longer, the darker and richer the pudding will get. Then let it cool and rest in a cool dark place until Christmas. If you like your pudding proper boozy you can ‘feed’ it with a few spoons of brandy once in a while.
At Christmas dinner steam it again for half an hour to heat it up, or cheat by popping it in a microwave. Don’t forget to add brandy butter, which is butter mixed with generous slosh of brandy and some powdered sugar (mix 100g of room temperature butter with 100g icing sugar and 4 spoons of brandy, then stiffen in fridge). For a real show stopper heat up some brandy in a metal spoon, let it catch fire and serve your pudding flaming!
Tuesday, 24 November 2020
In Singapore we had squirrels, flying lemurs, pangolins and pythons in our garden, amongst many, many other representatives of jungle wildlife. When we moved to the Netherlands, I worried about getting my fix of crazy creatures. Thankfully there are plenty around, perhaps less exotic, but not less cute. Next to our house is the Westduinpark, a nature reserve that sports Den Haag’s hedgehog shelter. Somehow I ended up volunteering there, and that is how Rob the blind hedgehog made his - albeit brief – appearance in our house.
|Rob the blind hedgehog aka Houdini|
Hedgehogs are nocturnal and don’t need much in the way of sight, so Rob’s biggest problem is that he cannot distinguish day from night. Wandering around in broad daylight is unsafe - many hedgehogs end up as roadkill. The plan was for Rob to live in our small enclosed garden, so we could observe him to see if he was fit for release. However, Rob aka Houdini had other plans. He came to us because he was stressed in his cage in the shelter and kept escaping, but that wasn't the end of it.
We pick him up in a small cardboard box. In our garden he spends half an hour crisscrossing around at high speed, bumping into people’s legs, like Sonic the Hedgehog on speed. We retreat inside, hoping on his own he will calm down. When we can’t see him anymore, I hope he’s settled down into the big heap of leaves I raked together especially for him. As a good hedgehog should, in the middle of the day.
|Release into the garden|
These little guys behave as hedgehogs should: sleep all day. In the evening we can see them roam around the garden, digging up the lawn and wolfing down the food we put out for them gratefully.
Every few days we weigh them, and clean out their little pen – hedgehogs are messy animals that love to relieve themselves where they sleep and eat. But when they look at us with their beady eyes and pointy snout, we will forgive them all their sins. The weather is mild and they are still underweight, it will likely be a while before they start their long sleep. So in the meanwhile we can enjoy their company.