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?