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Perhaps this is how I scream

Most days, I feel like I’m riding a rollercoaster. So much so, that I sometimes wonder how I manage to remain so damn calm. I suppose when you’ve lived with chronic illness for as long as I have, you have no choice but to survive. Sometimes, surviving means staying very still and composed when literally nothing is going as planned. I think this is what often shakes the people around me; when they finally learn of my medical challenges or meet me on a day when I actually look unwell, they almost cannot believe it because I’m not “acting” sick at all. At least, not as sick as my patient record suggest.

To be fair, I still don’t know what people expect chronic illness to look like. But I know that most people are mistaken. Just as I know it looks different every day, but then again, I’m living it in real time. So, excuse me if I don’t want to stay in bed every time I feel shitty—if I did that, there wouldn’t be much left of my life. There are times I get as far as the front door and think it’s irresponsible to expose myself to the harshness of a busy life when everything inside me is moving in slow motion. Those days I usualy stay home and do very little.

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There are days when I wake up feeling a boost of energy, and I used to mistake those days for being cured. I would get so excited; I’d run ten kilometres (literally), bake bread, cook insane meals, and call my mum to declare, “I’m healed! Let’s plan my wedding for next month!” Today, however—especially after years of medical therapy—every time I feel a slight “delusion” to do something over the top because I feel great, an alarm goes off. It warns me of my therapist’s words: Don’t spend all your energy in one day just because you have it. Try to hold onto it, so it lasts longer. Obviously, as a high-achieving perfectionist, this has been the hardest lesson of my life. I am patient with most things, but for some reason, I wouldn’t listen to my own body when it told me to calm down.

That might read like a contradiction, given how calm I present as a person. But I’m a calm person who likes to do a lot and I don’t like letting people down. I like to wake up early, make my food from scratch, read books, watch beautiful films, and experience culture and travel. My hobbies are too many to name, and although my social battery is short, I truly enjoy spending time with the people I love. I just need ten days to rest afterwards. All these things seemed to work seamlessly when I was deluding myself that I was well enough to do them all—until I had to face the hard reality that nothing will ever be the same again.

That might sound like resignation, but trust me, it took eight years to get here. I am still hoping that one day, at least some of my medical issues will become a small footnote in my story. Perhaps through a miracle advancement in women’s health or the body magically healing itself. I’m not giving up hope.

I’m writing this today because I’ve had to reschedule the first leg of my day due to an unexpected change in my body. “Unexpected” because I felt great yesterday. Despite struggling with strong migraines over the weekend and the worst pelvic pain imaginable, I woke up yesterday feeling—dare I say it out loud—no pain or discomfort. I went on an evening walk that felt magical, had good food, and cuddled with my partner before falling asleep rather late (for me, anyway).

Today, I woke up and my stomach is in a riot.

I told my therapist once that the hardest thing to navigate is how my symptoms intertwine. Everything moves so fast; one thing leads to another and before I know it, a month has passed and I can’t distinguish one day from the next. There is so much that goes on in the lives of people in a situation like myself that is kept entirely private. I don’t even think my partner, who sleeps right next to me, knows the full extent of it. I wear my pain very well. I know I wear it too well. Sometimes the frustration gets to me and I’ll explode; only then does my partner realise, “Hang on a minute, it’s worse than she said.”

It helps to stay calm, but I do wish I could scream sometimes. It would be good for my soul. I remember telling my psychomotory therapist about an incident, and she looked at me and said: When you tell me this, I feel anger, but I notice you are monotonous... like it happened to someone else. I think it would be good for you to punch a bag one day. Like boxing. I hadn’t gone to trauma therapy then, but even after a year of it, I have yet to punch a bag. I am just a calm person. I internalise a lot and have an inward emotional life.

I think, however, that my way of coping is creating and interacting intellectually, with the people and things around me. That’s why I will sometimes stand up and cook a perfect meal even when my body feels like it’s about to come undone from the pain. It turns out I’m also slightly sadistic; I am so used to the pain I often feel that sometimes it’s the only thing that reminds me I’m still alive.

I had a little break last evening, but today, I’m very much back on the rollercoaster. If I listened to my body every single day, I wouldn’t get anything done. So, it’s safe to say that most of the time, I don’t. Like tonight: I’m still going with my sister to an event at the National Museum, despite not being able to keep any food down whatsoever. I’ll feel like a clown putting on my make-up and clothes, as I get ready to go. Yet out there, no one will be able to tell the difference.

Thank God for that.

me, shoot by my little cousin (10), who insisted on trying my camera this january. Most pictures she took were blurred, except this one.

Whats your strategy to cope on the days nothing goes as planned?

Thanks for reading,

M.

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