Learning to live with an autoimmune disorder – A mosaic of my journal

Cathy Beesey Founder Stories Connecting Us

Part 2: My Once Strong Healthy Body

The link to my memoir Contents and published chapters is at the end of this post.

Chapter 6: Crickets, Sleep, Temperature, Bowel Movements

Day 5, Friday 13 February 2019. Wake at 4.00am, six hours sleep. Crickets chirping in my ears. Craving iced water. My mind on its journey of what does this mean. I take my temperature, and it is 36.1. Perfect. I have one of ‘my’ bowel movements. These things giving me a sense I am coming back and giving hope I am coming back stronger.

Writing, Symptoms and Side Effects 

Living with the enormity of Wegener Anca Vasculitis, its symptoms so powerful. Coming to realise more and more the impact and intensity of three months of chemotherapy, two tablets daily of Cyclophosphamide 50 milligrams and high dosage steroids of Prednisolone, 50 milligrams a day. I constantly wonder: is this a symptom or side effect? Noticing and adapting is now what I do. Every day I record symptoms and side effects in my journal, wanting to make sense of what is happening to my body, to me. I share with you, impressions from my daily recordings.  

Crickets always. Waking every morning, they are with me. Sitting for a while, they quieten. My ears blocked, I can’t hear properly. Lunchtime my crickets getting louder. Smiling at the way I have taken them to be my own, not understanding why. Is it because it didn’t sound like ringing in my ears? Did I not know another way to describe this noise? Why did I so completely make them mine? Maybe I will come to understand as I re-read my journal, bringing my story together. 

My friend Danni arrives with her list of questions about my health. She has done no online research listening as I explain my condition, treatment, symptoms and side effects. She learns from me, my interpretation, wanting us to make sense together of all I have learnt and the limitations of what I know. Sitting on our deck in the warmth and shade I talk about my crickets, always talking, the steroids giving energy. Danni is closing in on herself, her head bent forward, her shoulders slouching, ‘What is wrong?’ I ask. Danni worries I have made the crickets my own. ‘They are mine. It is the only way I can explain what is happening to my ears. Please don’t worry.’ ‘Okay, but please don’t start naming them. I won’t be able to cope.’ Laughing, ‘I might call one Christina.’ 

Today feeling a reverberation, fluttering in my right ear. It isn’t constant but comes and goes throughout the day, worse at night. Sometimes when I put my finger in my ear it stops. It is annoying, a new kind of annoying. I will call these noises my butterflies. Stopping, starting, reverberating, fluttering, this is my right ear.

I’ve been trying to do things to help around our home but today I don’t make the bed or hang out the washing, it is enough to shower and get dressed. Reading Big Magic by Elizabeth Gilbert fluid moves in my ears. Writing, my pulse loud in my left ear. Hearing, feeling, thump, thump, thump. Trying to sleep with my heartbeat slow and sluggish in my right ear. It is as though my ears and chest are coming to a point of repair but not nearly. 

*

Always thirsty. I have been thirsty since coming home from hospital, craving iced water. A good thing, I think. Glass of water, taking my temperature, the first things I do each morning. It is the chemotherapy tablets making me thirsty. All this water meaning only one thing … Dr Jonathon Andrews, my main specialist said, ‘Drink lots, go to the toilet lots. This will help your kidneys,’ this is what I do. Not only because of the advice; it is my love of drinking water. 

*  

Wanting more sleep. Wake at 4.30am with six hours sleep. Wake at 2.30am with four hours sleep. Wake at 2.00am, only four hours sleep. Our bedroom dark with the familiar slithers of light through planation shutters. Wishing I’d closed them properly, different levels of light across the expanse of the window. Silhouettes of my many perfume bottles displayed on my art deco dressing table with the crystals on my bed side lamp sparkling ever so slightly in the light of the digital clock. Everything is as it is, as I know it. 

Carefully, slowly lifting myself out of bed, no spring to my movement, my left hand finding the familiar feel of the iron bed end, my right hand on the corner of the wardrobe and using both hands in the doorway to the short angular passage. The light from the glass of the front door showing the way to our bathroom. Hands leading me from this doorway to the lounge doorway, past the hallway mirrored table as I turn left to the door to our bathroom. Twenty steps. 

Wake at 4.30am lying quietly for half an hour with crickets singing gently in my ears. Wake at 4.10am, my body so tired, heavy, lying still for an hour, enough, drawn to writing. Wake at 5.00am, bed at 10.30pm, six and half hours sleep. This is how it is. The woman who bragged of eight hours sleep every night, going to sleep as her head hit the pillow, not getting up to go to the toilet and never taken a sleeping tablet. This gone, replaced with my new normal. Drooling during the night as I sleep, I wonder is this because of the drugs I take. How am I going to still my mind as I look for changes? Waking during the night to go to the toilet two or three times. I am getting use to this. 

Two sleeping tablets, one when I go to bed the other 2.45am, giving eight hours sleep. Waking when it is light, hearing birds singing. A smile, laughing as I talk with Stan and our granddaughter Tahlia over breakfast. Another night, slept ten hours, resting peacefully, my mind still and calm. Seven and a half hours sleep and what a difference it makes. Sleeping four hours, lying quietly for an hour, my body exhausted. 

Tonight, I am a good tired, bed 10.30pm sleeping soundly I don’t hear Stan when he comes to bed.  Sleeping longer, not waking to the dark of the morning. My new approach: go to sleep without a sleeping tablet, waking a couple of hours later to go to the toilet, taking a sleeping tablet giving more sleep. What a relief. Up at six with breakfast at 7.30. Extra sleep improving my days, knowing this is what I need. Looking at the clock, it is later in the day than I thought, a pleasant surprise. Staying up later, sleeping better. 

Wake at 7.30am, the latest I have woken since coming home from hospital. Over dinner Stan asks, ‘Did you have a better day?’ ‘Yes, it is time to find my confidence and do more, so I sleep better at night.’ I do not say more, knowing he has noticed and knowing I will love him forever. 

Exhausted barely making it to bed. Sleeping six hours, no sleeping tablets, feels natural. Sleeping nine hours with two sleeping tablets with an extra hour as daylight saving ends. Extra sleep giving strength. No sleeping tablets, slept well, peaceful. Lying quietly for nearly an hour, joyful thoughts of yesterday with family. Ideas swirling with what I want to write in my journal. My mind moving from one idea and feeling to another and then the swirling intensifies to negative thoughts. Time to get up, a new day. 

*

Feeling cold, not sure whether it is the outside temperature or my inside temperature. I can’t sit in the sun to warm myself, the chemotherapy. A high temperature for so long before diagnosis, confused as to what is reality. 

4.30am wanting to take my temperature and still I can’t use the thermometer. How is it I can do all this technology stuff and not use a thermometer? The wonders of who I am. My temperature is normal and hooray finally learning how to use this thermometer. Another day, I know I don’t have a temperature, hesitating, I take my temperature anyway. It is normal. 

My bowel movement perfect, just like I know it. Next day, no bowel movement when I first get out of bed. Give my bowel a break, it is the middle of the night. Am I constipated? It’s been a day since my last bowel movement. It’s really all okay, just a different day, maybe different food, I relax. Another day, 4.30am my bowel works like it is mine and my temperature is normal. Thank you, my body. You may have fucked up big time, but you are helping me get well, returning to myself. I won’t keep recording my temperature and bowel movements. They are as they should be. I will monitor and notice. 

*

And there is more. Occasionally, I think this is like a hot flush, happening mostly at night and waking me from sleep. I didn’t go through this during menopause and felt quite smug. Sometimes I smell chemotherapy coming from my skin, tasting it as I rub my tongue around my mouth with my bowel movement smelling stronger, chemical. It is the smell when I was with my friend Penny as she was having chemotherapy last year. Bleeding when I blow my nose first thing in the morning: long, soft globules of snot changing from yellow to green, streaked with dark or bright red blood. The occasional nosebleed. Feeling nauseous, is it tiredness? 

My vision isn’t as sharp this morning as I write. Is it worse because of the tears I cry, anxiety, treatment or is this the symptom of Wegener Anca Vasculitis strengthening? Watching television there is flashing from the corner of my right eye. It is like when I had my cataracts done: psychedelic patterns, the ones I was told I would see. Now fearful, sitting quietly, eyes closed, not knowing what else to do. The flashing stops after twenty minutes. One to tell my specialist Dr Jonathon Andrews. 

In hospital, always hungry, waiting for my next meal, I shared with Stan in detail the food I had eaten. Loving Stan’s cooking I listed all the meals I wanted him to make when I came home. Within a few weeks I have eaten everything on my list. Stan buys blue serviettes with the word EAT on them, I laugh, ‘They are perfect.’ At home, always hungry as I wait for my next meal I eat fruit and yoghurt each afternoon around four o’clock so I can wait for dinner around seven. Stan saying, ‘We’re too young to eat our meal at five.’

All of this is so much more than my heart, mind and spirit. It is my physical health. My body has let me down, wondering will it let me down over and over. How will I cope with this betrayal? 

Breakfast, Always Hungry 

Copyright Cathy Beesey, March 2025. All rights reserved; this intellectual property belongs solely to Cathy Beesey.

This is the link to my memoir Contents and published chapters.

Grateful – Contents