Hurt

Bolstered during the night,
Clutching bed for comfort on waking.

No relief, no answers.
Silent plea for care, grim understanding.

Plagued and incapable, learning.
Last life’s memories, ignorant jewels.

Sweetness, poisoned by experience.
Let no one else suffer, but they do.

Beyond imagination, reality for us.
All we can offer, a precious spoon.

Relief

I hate answering “how are you?” because the answer is typically “crap”, but the bummer for the asker is a bigger bummer for me who lives it. 

Yes, others have it worse. Others share similar stories. This is just one small story of one small day.

No advice please. Do not make a single suggestion. Tweet me @antheaw or read more about my health starting here: The problem with my head, or just the #health tag.

I have used my most coveted pain relief concoction for four out of the last five days. That’s more than I usually resort to within an entire month.

Yesterday, I went without. “Without” does include the following medications which I take daily:

  • Acetazolamide
  • Citalopram Hydrobromide
  • Propanolol Hydrochloride
  • Paracetamol
  • Ibuprofen
  • Clonazepam
  • Pantoprezole

This list excludes vitamins, contraceptives, a digestive aid I sometimes need to prevent constipation, and additional occasional (i.e not everyday) medications.

Yesterday I woke around 6:30am, helped my partner in the kitchen to prepare for work before settling onto the couch. I have a a guest in the house but I didn’t dress yet. This couch session is for taking morning medication, hoping that being upright will help the fluid drain from my head and lessen the pain of the pressure built up there. #IIH

I played a little Minecraft on Xbox, got cold and too sore, returned to bed around 8:30am, and slept until midday when my guest also got up (they are on a different timezone, different body clock).

They made me poached eggs, I ate two and a slice of toast. My stomach could handle that, just, followed by some tea and a return to the couch. In the dark. It was a beautiful day outside but the glaring New Zealand sun sears my eyes and feels as though it fries my brain.

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I researched online streaming, gaming, watched some streamers, played more Minecraft. At least within the game it feels as though I am making progress, and it takes my mind off of so many things until my pain becomes too much again.

Late afternoon, my guest went to walk in the lovely park across the road from my house. I was in too much main to go, and the idea of doing so was awful. It used to make me feel good to do that.

Alone I stretched, some yoga type moves, working with my body weight to trigger my weakened muscles. After more sleep, which is excellent pain avoidance, I showered in the hopes of feeling normal for my partner returning home from work and my friend from their walk.

This was quite an achievement, to shower and wash my hair, dress in clean clothes and get to the couch in one burst of energy and pain. Tolerable for long enough to complete that set of tasks. It’s impossible to overstate how hard a shower can be, not just for me.

By the time everyone returned to the house I was adamant I could do no more. No more. And yet.

From leftovers of two previous nights and various pantry staples I invented dinner, and made a disastrous mess of the kitchen. I didn’t need the food, and I’m finding it hard not to feel or to show resentment for having to provide a meal. My partner loves to cook and often will take over.

There was really no energy left for me to clean up. The only person I was letting down by allowing the kitchen to stay a mess overnight is me. My Mum always cleans her kitchen before bed, even after a party.

I watched TV with my guest and relaxed, I finally started to feel a bit better as often happens at night. My mind off the pain, I enjoyed her company and the show before everyone left for bed while I wanted to savour feeling ok.

If you are in pain and feel horrible 70% of the time, you want to enjoy the remaining 30% of your time as much as possible. I get too excited though, many of the things that I might like to do could set me back to feeling horrendous so, I can enjoy, but have to take it easy.

Bed again, my favourite place in the world but also the last place I would like to be sometimes. Three hours sleep until my partner wakes for work, my cat wedged against my other side, witness to my day.

Paying for dinner

My partner and I went out for dinner and to see Deadpool* at the cinema tonight. After a decent meal, hosted by the restaurant owner or manager and a team of rushed young women, we were perfectly timed to get to our film.

From a seat basically under the bar I got up, and reaching into my bag for my wallet, sought to pay our bill. The manager was at the till and as I approached I was cut off, by a middle aged white man in a blue t-shirt brandishing his credit card. I couldn’t see more than his blue-clad back as it blurred before my eyes in its haste to deposit the credit card on the counter.

I was stunned. Am I actually invisible? Was there a secret ingredient in the pizza that rendered me translucent, nothing but a breeze to be brushed by unseen? Standing at 5ft 8in, of generous size and dressed (also) in blue, I was plainly fucking visible and arriving first to pay a bill.

Pissed off indulgently on my own behalf, I stood by and fumed. Those who know me would recognise the utter disgust I was feeling in the flare of my nostrils and furious flashing of eyes, raising of brows.

The priority transaction took long enough that I had recognised not only my own previous experience of being “invisible”, but that of so so many others. This shit happens all. The. Time.

What could I have done? Persisted “excuse me, I was here first”, which would cause discomfort for all parties and share the bad interaction, or (the “ladylike” option) internalise the rage and carry the affront myself.

As so many others do, I kept my mouth shut. I tolerated it and let it slide. The credit card man would not have even considered my existence, and the venue manager only saw me when he had departed. I was only marginally colder with her than normal. Payback. Sick burn.

Next time this is you, if you feel safe enough and have the fortitude, stand up for yourself when someone is rude. Don’t bear the injury by yourself, spread it round so others feel it and can stop being The Worst in public.

I’ll try too.

*Yes, Deadpool was good, go see it

Fly like a woman

Assigned seat 6E on an A320 plane, I know it’s not likely I’ll have a seat empty beside me. I’m hopeful to be seated next to good people.

I’m first to arrive in my row, tentatively sitting in the middle seat and not fastening my seatbelt because at best, no one will be seated by the window, and I can move there. Or, I’ll have to move to let my neighbour in to their seat.

Smaller than I once was, there is as much room as possible around me. My short legs mean there is room to walk by in front of me to get to the window seat. I can now easily buckle the belt, where 16 months ago it would have cut into my flesh. My thighs are no longer so big, they raise the arm rests. I fit perfectly well.

Dump. A large bag lands in the seat to my left, by the aisle. A tall-ish, balding and grey-clad older man is stuffing another bag into the overhead locker. He then reclaims his bag from my left and moving toward me, motions that he is to sit in the window seat to my right. There isn’t really anywhere for me to go, so I awkwardly squirm backward in my seat in a show of making space for him to pass.

His bag installed beneath the seat ahead of him, the grey man extracts an iPad and circles the entire arm rest between us with his left arm. He isn’t a big man, but he presses against the right side of my body, unwelcome. The warmth of him uninvited, reaching through my cardigan to spread along my skin. I feel anxious and uncomfortable, “please don’t touch me” repeating in my head. I try and recede to the left.

With more respect, a greeting, a man wearing blue arrives. He is shorter than the first and completely bald. He sits and I adjust myself to the extreme centre, elbows tucked tightly against my sides and held painfully in place by the arm rests. The blue man sits comfortably, and though resting his arm along the inside of our shared arm rest, he doesn’t touch me. I can no longer lean left to escape the grey man, the heat of him encroaches.

The grey man’s arm is rubbing in an unpleasant pulse against me as he scrolls text on his iPad. It turns my insides, my panic rising as the plane is filled with more, more people.

I feel a tapping on the backs of my feet, left bare by my sandals. The man behind me has somehow stretched his feet so far forward that he is using the foot rest below my seat. Annoyed, I move my feet back against his to clarify that the space is occupied. The tapping continues. The rubbing against my arm from the grey man continues.

I realise I am surrounded by men in every direction. I can’t see any women. I send a distressed tweet, and women in my network respond with compassion and understanding. They all understand. They have been here.

Elbow him back, put earphones in, a hacking cough? Coping strategies emerge. Press the call button and be moved by the flight attendants. Breathe.

I am too afraid to shove back for space, confrontation in the subtlest form is terrifying, I am threatened already. I will not ask for more space. It doesn’t occur to the grey man that he is touching me.

My face feels tight and I realise my muscles are tense. I close my eyes and try to mindfully focus on my breathing. The darkness heightens my sense of awareness, and the hideous warmth of the grey man becomes my focus, punctuated by the tapping against my feet by the man behind me.

I open my eyes and realise there are two hours to go before the flight arrives in Auckland. The back of my seat tightens against my arse as the man behind me presses into it. We are still on the tarmac. The plane hasn’t yet moved.

The grey man twists, retrieves a business document relating to a former client of mine. He’s making notes, the twist has lodged his elbow against my rib and each new line is a fresh dig. I have nowhere to go, the only movement is the increase of my irritation, discomfort and despair.

My Twitter support network, if only they were with me to shout a resounding “fuck off!”. It’s suggested I spill a drink, but I feel all I could do is spill tears. The plane moves, and too soon it’s time to shut off my understanding friends with airplane mode.

The plane is in the air, and while there is the odd reprieve from the grey man’s excavation of my ribs, the gentleman in front of me has reclined his seat. I have an unwanted, intimate view of his scalp. I’ve had to move my feet forward, as the man behind me has extended his own to reach my ankles. I remember, wryly, I was the most flexible girl in class.

This is awful, and no one around me has a clue. They won’t have a clue. This experience will join the others in my past which condense to anxiety, fear, distrust. To avoidance of situations in close quarters with others.

This is one small part of what it means to me to be a woman.

Post-op

I’m writing a few posts about my health issues.

It’ll make the most sense if you read from part 1: The problem with my head. Each post has the next link below it, this is part 4.

If you wish to talk to me about what I write, please do so via twitter: @antheaw, or on Facebook if we’re friends there.


It’s my birthday! And I don’t feel nearly as awful as I’d suspected! I’m getting a tonne of messages asking how I am which is lovely, if a little hard to keep up with.

As Monday the 12th of January (operation day) was the first day operating this year for North Harbour Hospital where I had my surgery, they weren’t open when we arrived. There was one other patient waiting outside, it was very strange, and still dark at 5:45am.

When we were shown in, I was taken to my room first and given a gown to change into. I promptly put it on backwards. I had compression stockings put on (I have to keep them on for a week!) and some precursory medication given. Beta blockers, blood thinners, stuff to reduce stomach acid. People came and went and mum made herself comfortable in the recliner in the room, wrapped in a blanket.

I met the anaesthetist and while she was very nice and smiley, she was also very brisk. I’d been worried that paracetamol does nothing for me, and that I usually take tramadol and neurofen to help my migraines (though I have only had this once in about 4 months), but this was dismissed as “different pain responds to medication differently” and she was off.

Just after 8am it was time to go, and I was wheeled in my bed through the hospital to theatre. Mum’s tears as I was rolled away were probably the hardest part at this point so I had my brave face on.

The nurse and orderly handed me over, my identity and operation being performed were double checked and I was taken into the operating theatre. It wasn’t quite Shortland Street! Very bright and there was a large white board with “Whittle” on it had a long list of writing, labels for mysterious instruments.

I moved to the operating table and positioned myself in the middle. Monitor sensors were put all over me including my forehead, and the anaesthetist inserted the IV lure and injected me with something that started making me woozy. The gas came next and I was out.

As with the last time I woke from general anaesthetic I don’t remember much. I remember being wheeled back into my room and “them” saying to mum “here she is”, and then I drifted in and out of sleep. It was after midday so I’d been away for about 4 hours.

I was up out of the bed by about 2pm, sipping 30mL of water every hour. Pain was definitely present but the nurses had that under control pretty swiftly. I moved to the recliner chair and around 6pm my dad and sister came to visit. 

I have five “entry points”, about an inch long each tightly sutured, they should all heal well. One aches more than the others.

The night after the op was ok, every few hours I would wake up, page the nurse and have my wires unhooked so I could bathroom and do a few laps of the hallways. They get you “mobilising” early and often, as during surgery your body is inflated with gas and that gas needs to come out, so walking about helps get it moving. I had maybe 4-5 hours sleep and the hospital kicked back into day mode from about 6am. 

I started my 60mL of water per hour and had to down my regular medication crushed in water – it was like taking shots from a toilet bowl and I have to do that every day for the next month. Worst.

Mum arrived again around 11am hoping to take me home, I showered and had my wound dressings changed. We had to wait for a particular bodily function before I could progress, and I was pacing around my room like a pregnant woman willing the baby to move along. 

I was home by about 4pm the day after surgery, responsible for sticking to the fluids and monitoring the pain relief schedule.

The night was pretty bad, I got nauseous and diarrhoea had me up in the night, some dry retching. I phoned the nurse day 2 post op (yesterday) and she said it was all fine, all normal, just residual effects of the general anaesthetic.

During day 2 I managed to get all my fluid in, an optifast shake, some berrocca, water, and I had about a cupful of extra protein milk too and it all went well. I managed a small walk, a visit from a dear friend and to pat Local Cat. My insides seem to have stopped warring and making awful noises for now, and I almost managed to sleep the whole night last night!

I forgot what day it was when I woke this morning, but my phone was particularly busy with birthday messages so I was soon reminded. I’m up and about, feeling pretty good just not as nimble as usual.

I have a lot of fluids to drink! I’ll be on this liquid diet until two weeks post op, then puree and soft foods before slowly reintroducing (very well chewed) solid foods. I haven’t had any discomfort from taking in liquid to my new tummy yet so let’s hope the good-ness continues to last!

Yes, my head has been a bit sore too – the past two days but nothing really beyond the usual.

Will I do anything special for my birthday? Nope, but I plan to celebrate in 6 months time when I’ll be healed and hopefully doing much better!