Chronic Illness Diary – When Saying “I’m Fine” Is A Big Lie

Chronic illness is always there. When a person with chronic illness says “I’m fine”, this is what they sometimes want to say instead.

I’m sick of my life.

It’s not my first thought this morning, but it’s definitely the overwhelming feeling as I go on.

I wake at 6, then 6.50. I fall back asleep and dream about Harry Potter until my alarm goes off at 7.15. I’m doing the school run today, the car has to be dropped off to the garage first thing, so it’s up to me. In preparation, I went to bed at 10 last night, but 7.15 comes and the alarm wakes me and my whole body, all of it, is extremely unhappy about it. My neck is like a felled tree trunk, the stiffness extending right down my back, little branch arms numb with the shock of being awake. 

I can’t get up right away. My stomach is complaining, best give it a minute to settle. The rest of me is cramping its way out of stiffness. I look at some cat videos on Facebook.

With effort, I get out of bed. My left knee threatens to buckle – I put too much weight on it too fast. I shuffle, zombie-like, to wake my child. He’s eight, but today is one of those mornings. I have to hand feed him his breakfast because he’s too distracted with everything else to eat. I go through each item in his lunchbox, triple checking that he’ll eat it.

I feel weirdly bloated with earliness, but I manage to eat about half of my own breakfast. It’s porridge, plain, with flaxseeds and nutritional oil mixed in – for my stomach and joints respectively – and with it, I take my first lot of pills for the day. I throw away the remaining half of porridge, feeling guilty.

‘I’ll be sick if I don’t eat before my pills,’ I tell myself, trying to be proud that I ate anything.

I dress him, and myself. I throw some eye drops in before I forget. I decide to go for a swim because it’s been about two weeks, and quickly pack my gym bag while he puts his shoes on. I find him barefoot, reading, a few minutes later.

Finally ready, we leave. It’s a rare sunny spring day, a little bit warm, the light golden and only a bit irritating to my sore eyes. He runs ahead, yelling ‘chop chop!’ at me, giggling. I walk slightly faster, my heart hammering wonkily in my chest. I can’t run today. No way in hell. I smile but he’s gone already, zooming ahead up the street with young enthusiasm.

I’m breathless by the time we reach the school. Some of my toes are hurting again. The cheery sun is blinding, but otherwise my eyes feel okay for the first time in weeks, and I’m glad.

‘I was meant to do the ironing yesterday,’ I remember absently, waving him goodbye with his classmates. I have six and a half hours before I need to be back up here.

I head straight to the pool. I have to sit down for a minute after changing. I look at my phone again, waiting for my frugal strength to return. I put special, expensive, anti-chlorine cream in my hair, and pile it carefully on top of my head. It’s extremely fragile, my hair, thanks to my faulty collagen, and worsened significantly by one of my pills. I take what feels like the most expensive hair vitamin on the market to counter the effects. It helps a bit.

I’m the youngest person in the pool by at least twenty years. 9AM is the unspoken oldie hour, so there tends to be some resentment. While I’m stretching, an old man bumps me in the Olympic sized, mostly empty pool, and doesn’t apologise. Later, in the locker room, an old woman will open a locker immediately behind my head as I’m changing, forcing me to move.

I’m young. I don’t need to exercise so early, surely. Just another silly girl failing to get that bikini body.

In spite of careful stretches and prep, the oldies put me to shame in the pool. I barely manage two lengths, curling up in agony at the end of each one, and stopping several times in the middle. I try to go slower but it’s no good. My left knee keeps locking in place, aching monstrously the second I stop moving. I don’t know if it’s the pain, the early hour, or the extra movement, but my chest is misbehaving, too. I hang, useless, from the pool’s side bar by one hand, the other pressed against my face, echoing my breath onto my palm, my legs curled with pain below me. Nobody checks on me.

I float then, for a few minutes, feeling a bit better, happier. Sunbeams filter onto the water prettily. I feel light, vaguely disconnected from my body. It’s nice. My many aches dulled for the first time in… I don’t know. It’s rare to feel this way. The relief is incredible.

It’s short-lived, though. Floating often helps but today it’s just not enough. The pain seeps back into my spine, oozing like a poison. I go to the hydro jet and blast my lower back, trying to force the pain back again. The jet is faulty and currently up way too high, but I stay under it anyway. I can feel my skin burning with the power of it, peppering any exposed areas with little bruises.

The jacuzzi, usually my favourite spot, makes me feel sick today, so I get out after a few short minutes. The sauna can be very helpful with my chest, so I force myself in for five minutes. I just want to leave at this point, though. Things didn’t go well today.

I lean heavily against a traffic light as I wait for it to change, considering, again, whether a cane would help on days like this. I look at it with a sort of desperate consideration – my back, certainly, could use the extra support. My knee might behave better if it had the odd rest. But my fingers, wrist, elbow, and shoulder would no doubt suffer, thinking of how I dislocated the top joint of my finger in the pool earlier by doing… nothing in particular, actually. My neck would probably complain too – I can’t even tell what’s happening with my neck anymore. It’s constantly stiff, constantly aching, no matter what I do to it. My posture would be affected, too.

‘Probably not worth it,’ I decide for the thousandth time, limping across the road before the lights change again.

I get home at 10AM, holding my breath as I pass my neighbours, who are cooking fish for later, apparently. I try very, very hard not to gag, and practically run into my home. I’m too exhausted and sick and sore to put my swimsuit straight into the washing machine, as I’d like to. I have to sit down first. I look at some more videos of assorted cute animals.

A shower is waiting for me. Heat is restorative, and a hot shower can do a lot of good for me. I find myself unable to move towards it, though. My stomach is roiling, so I slowly eat a dry, gluten-free, dairy-free peanut biscuit, and accidentally gulp a glass of water. I guess I was thirsty.

I try to be productive while I wait for my stomach to settle. I check my emails and look at some of the paperwork I have within grabbing distance. I’d love a nice coffee, but it’ll destroy my chest. It’s not worth it today, I decide, not for the first time, and opt to use a fancy exfoliator that smells of coffee in the shower instead.

Eventually, I put my suit into the washing machine en route to fetching another glass of water. I have to sit back down for a second after. But then, finally, I make it to the shower.

It’s wonderfully hot. My skin is turning red, but I don’t care. I breathe deeply, my shower gel smells amazing, this is wonderful. I wash, and take the time to routinely, boredly examine my breasts, safeguarding myself against future mystery lumps, like the one that nearly killed me last year. I use my new ‘fine hair’ shampoo but the water is running out, so I hurry up. It smells a bit like beer, but not unpleasantly. I forget about my exfoliator.

After I get out, swaddled in towels, I feel worse again. The rest of my home feels very cold now, so I have a little brainwave and make myself a hot water bottle to sit down with. It burns at first, but quickly becomes too cool to provide any pain relief, so I switch it out for a heat pad – forgetting that I got it in the first place just to warm up a little.

My fine hair is wrapped carefully in a towel on the top of my head, and it shouldn’t feel heavy but it does. The gravity of it presses on my vertebrae. My toes hurt again and I can feel my left hip, overcompensating for all that locking my knee did, starting to tighten up. I still feel nauseous, but I sort of want something salty, so I’m probably hungry – I can’t quite tell.  I make some tea while my stomach decides what it needs.

There’s a fancy hair treatment above the fridge that my stylist told me to use this week, but there’s no way I can bend over the bathtub to rinse it out by myself. Right now, I don’t even feel able to dry my own hair, my arms are so heavy. I have to get dressed but I really feel like I need a nap.

It’s not even midday yet.