Thursday 14 October 2021

World Arthritis Day

I am not good at these ‘days’ that people cook up for whatever reason. I’m notorious for forgetting my wedding anniversary or my parent’s birthdays. This year I managed to almost forget my own birthday. I love a celebration, but why tie it to a date? So it isn’t at all surprising I found out the 12th of October is World Arthritis Day only after it happened. Not a celebration, but an excellent way to bring attention to a rather invisible disease that can make life quite miserable for a lot of people. People like me.

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

Impetuous April

I’ve often heard people say they miss the seasons whilst living in the tropics. To be honest, the only season I ever liked is summer – so living in an eternal one suited me just fine. But, now I’m experiencing it for the first time in almost a decade, I have to admit spring too has its charm. 

Describing spring makes one resort to clichés that don’t suit the sense of naïve wonder I feel looking at the tiny flowers suddenly sprouting up everywhere, battling up in unexpected places, between tiles on roads and in the sand of the dunes. Spring beauty is so fragile. The weather is still cold, and too early an abundance can be punished by night frosts. Still, spring sunshine has unexpected powers. When you find a spot that is sheltered from wind and showered by sun, you (and hereby I mean me, an extremely cold-hating person) can sit fairly comfortably outdoors. Until the tiniest of clouds obscures the sun and I need to rush back inside, to my electric blanket. And yes, I still wear my thermal underwear most days, in case you were wondering.

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.

What makes spring in cooler climes so special is that everything happens at the same time. In the tropics birds nest year round, here a massive muddle of building action explodes in April. Spellbound, I stare at Mr and Mrs Blackbird going back and forth into the tree in the back of our garden with little twigs, for an hour. Mind you, we are still in a lockdown. It does not take a lot to excite me these days. 

A few weeks back an exuberant frog orgy exploded in our pond. Now this was proper excitement, to see these frogs do what we humans have not been allowed in ages. Dozens of them attended the party of the year, right in our garden, and for some of them, the tight embraces got so intense that they lost their lives in the kerfuffle. This week the first tadpoles emerged from the huge patch of frog spawn that resulted, and I have no idea how the tiny pond will be able to sustain this sudden invasion of thousands. I’m sure the herons are sending out invitations for their big party, happening soon, snacks are being prepared.

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.