Expectations vs. reality

On the unpredictability of chronic pain.

I’m in pain a lot these days. I don’t know what’s happening to my joints, but they are often stiff and ache when I sleep. When I investigated similar symptoms a few years ago, I was told nothing was wrong. Every blood test and examination announced that I should, in theory, be fine. But I wasn’t. I couldn’t get out of bed for days, and everything I did took twice as long. It sort of went away after I began accepting the situation and resting more. The year after, I went travelling, and I think more movement was good for me. I also wasn’t stressed about work. I had lost weight too, which put less pressure on my joints.

However, since I’ve been back in England and working full-time, the pain has slowly crept back and firmly established itself in my neck, shoulders and feet. It rarely budges unless I soak myself in a hot bath, beg my partner for a massage, or drink two tablets of ibuprofen. It’s bad on days I don’t move much. It’s worse on days I eat refined sugars. It’s relentless if I dare to touch alcohol or have a bad sleep. It’s also confusing, because despite feeling like I am forcing my body through treacle most days, on rare occasions, I am as light on my feet as those crazed Duracell bunnies and momentarily forget all the pain. And then it returns.

All of this is to say that I didn’t expect to feel like this approaching 30. Frankly, I thought this type of physical body pain was reserved for people a few decades older than me. But I’ve arrived at a place where I can’t ignore it anymore.

Three years since I last tried to decipher this chronic pain, I have several new theories about what could be behind it — hyper-mobility, fibromyalgia, insulin resistance, PCOS or autistic burnout, maybe a combination of some of these things — but fret not, I’m also consulting a doctor to ensure my hypochondria is cross-referenced with actual medical expertise. Though one thing is clear to me: whatever it is, I need a whole lifestyle change to quieten my body’s screams. The cycle of what feels like chronic inflammation must end. In practice, this will look like a strict routine of no stress, no alcohol, good sleep, exercise and a healthy diet. That is the reality I am faced with, and one I may be forced to accept.

An effigy in Byrsa Hill in Tunis.

I falsely thought that a holiday to my family home in Tunisia, which I was on last week, would help me press the big red reset button on the pain. It had all the right ingredients: the sun, the sea, and day trips to see Carthaginian ruins. My mum even booked me a trip to the spa, where I got a whole-body scrub. But when I got there, the trip demanded far more from me than I had anticipated. Every day was crammed with activities that would show my partner the city, as it was his first time there. Then, in the spare pockets of time, my little brothers, who don’t see me often, wanted to hang out and play games. I was craving downtime in my room, but more often than not, wound up cross-legged on the living room floor playing Ticket to Ride and Smells Fishy.

My body held up for most of the week, but on the last day, it weighed down with exhaustion. A simple walk to the beach felt an impossible task, though I did manage it with patience. At that point, I knew I desperately needed to get back to my routine in London, to eat my own food, and most of all, enjoy the long periods of silence at my flat. My mood had plummeted, as had my energy and social battery levels. This is the thing with chronic pain: pushing through makes it worse in the long run.

Like many disabling conditions, chronic pain is dynamic. One day, I’m on my feet and seem fine to those around me, but the next, it takes me an hour just to get dressed. The brain fog makes everything play out in slow motion. I’m trying my best to accept that this is where I currently am, because I know that to start healing from the physical pain, I have to work with my reality, not some mad, unsustainable expectation of myself as a superhuman who never rests. But deep down, I do want to be that superhuman. As well as excelling at my job, I want to be at every event I get invited to, I want to have more energy to do my hobbies, to study, to exercise. I want to be the version of myself when my joints are not at the forefront of my mind.

It does scare me deeply, where this pain might lead me. There are days when I can’t stop the questions: What if nothing I’m trying works? What if this is degenerative, and I slowly lose my ability to move with any freedom? What if the worst days become the default? Can I afford that, especially when the political backdrop is that disabled people are having their support cruelly taken away by the state? It’s not just fear of the body breaking down — it’s fear of being left behind in a society that views disability as a burden rather than something to be protected. Who will I be if I am not as productive as I am now? If my value can’t be measured in output? These are tough questions to sit with, especially in a culture that worships resilience and views rest as a luxury. I don’t have the answers, but I’m trying to remind myself that my human worth, like anyone else’s, isn’t conditional; it’s inherent.

Feeling so physically beaten down by your body is arduous, but having to keep up the act that everything is normal, mainly because you desperately want it to be, makes it even harder. And because sometimes I do actually feel “normal”, or really what I mean is, more able, I get mad at myself for having done something to cause a new flare-up. But on the days when everything feels impossible, like last night when I missed a friend’s book launch and instead spent the evening trying to gently stretch my body in the confines of my bedroom, I’m trying to be more forgiving — of myself, of how things pan out, the expectation vs. reality.

Sometimes you plan a healing escape to the Med, and instead you return more tired. Such is life.

Things I’m enjoying at the moment:

• Organising a party! Me and

  Issey Gladston
  are throwing an event tonight in southeast London for
  Hothouse Bookclub
  in collaboration with No Music On A Dead Planet. We’re kicking off with a panel talk, featuring authors Adele Zeynep Walton, Joycelyn Longdon, and then we will have DJs from 9 to late. Please come down if you’re around! Grab a ticket here or just get some on the door, but we may sell out.

• I Want To Go Home But I’m Already There by Róisín Lanigan. Excellent. Five stars. Roisin is a very talented writer, and I was completely absorbed in her debut novel. The book follows the story of Áine, her new haunted home, and the twelve months she has to spend living with her boyfriend in there. I loved it because at times, it’s hard to separate the horror of renting in London vs. the actual horror of a ghost roaming the house.

• I’m reading Enter Ghost by Isabella Hammad. It’s a novel about an actor who returns to Palestine and joins the local production of Hamlet. I’m enjoying it for two reasons: Hammad’s incredible storytelling, the type that makes me want to improve as a writer, and also learning about the differences in the lives of Palestinians in Gaza, the West Bank and in Israel, and how these differences came to be, which are explored in the historical context of the novel.