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Down into the valley, where the beast has his throne. There I sing my song, and I sharpen my blade. I am the hunter of invisible game – Bruce Springsteen.
I have been here before, but I am struggling to find my way, to locate familiar landmarks and prepare myself for the process that will be surgery. I was three years younger, I was a graduate of English Literature and Criminology, yet even to gain my acceptance into nursing school, I had never been in hospital, the last time I was here. This time I have been a nurse for six months, I have spent three months in the operating theatres as part of my student years and am intimately familiar with every aspect of the perioperative journey – every smell, every curve of the hallways that make up the twenty two theatres of my hospital, the trolleys that line the halls of our day of surgery unit. All of my memories have been replaced with these ones, this hospital I am in is not my own and I feel like I have lost my nursing wings. I lie on a trolley in my gown and TEDs, my hair under a cap instead of my scrub scarf, my uniform can’t protect me here. On a trolley you can see very little of the environment around you, it’s merely a series of twists and turns and suddenly you are at your destination. At work I know the names of the porters, they are a welcome site, here I know no one. The first time I had surgery here I was afraid, everything was new and unknown and all of it terrified me. Anaesthesia was a terrifying black hole that I could have lived without travelling through. This time there is not so much fear, for the operating theatres and I share a special relationship of love and loss, it is a different feeling this time – anxiety, an air of disconcertion. I am not in my usual position in this environment. The surgeon senses it when he comes to see me, he makes his usual jokes and promises to text my Mum everything that happens so that I know. But at the end he puts his hand on my shoulder and tells me I don’t look quite right. His mind goes to physiology first – do I have a fever, am I sick? He knows I am a nurse, and a born theatre nurse at that, perhaps he has forgotten that I would rather be where he is standing. He tells me it’s all going to be okay.
“I’ve got you sister,” he smiles, he is one of a generation of doctors who still call nurses by the name of sister. “Sorry my hands are bloody freezing.”
But when anaesthetics takes me inside and I crawl across to the table the feeling dissolves. I see the scrub nurses and their trays, intimidating to most people, but they comfort me. This is what I love to do, this is the place where I have felt the most joy. Today I am part of the magic, but instead of the magician’s assistant I am the trick itself.
“I’m going to give you something to get you started,” the anaesthetist says.
“Is it midaz?” I ask hopefully.
He nods and laughs, remembering that I speak doctor.
“I love midaz, hit me with it,” I smile. “Can’t be scared when you’ve got midaz.”
When the anaesthetics nurse pre-oxygenates me for induction she tells me to imagine myself somewhere nicer.
“Where are you?”
“In the corner doing the count with the scrub nurses,” I tell her.
What can I say? I’m a joy.
Her smiling and telling me I’m doing great is the last thing I remember.
When I wake up there is an overwhelming sensation as though I’ve been hit by a truck, combined with crippling nausea. Apparently I am halfway through a fentanyl pain protocol, 100mcgs in, I have no memory of being awake or in pain before this – quite possibly a good thing. I have apparently also gone through two different classes of antiemetics. I remember none of this, but trust from my dizzy head and the way the student nurse is eyeing my breathing that I have indeed been gifted with a lot of opioids.
This time when I wake up I am less scared, less desperate for answers, more able to focus on the task at hand – breathing, recovering, and not throwing up on the two lovely PACU nurses who are taking care of me. The familiar squeezing, somehow both dull and sharp simultaneously, is there too, it is almost comforting how familiar it is – nothing has changed. The familiarity may be comforting, but the pain itself certainly is not. The fog of anaesthesia has begun to clear and everything is suddenly sharply in focus, as though I am on a ride that has jarred suddenly to a stop.
“Ow,” I whimper suddenly, instinctively touching my abdomen, but stopping myself – nurse Dannielle is still in the house and she clearly doesn’t want patient Dannielle to mess up her incisions.
The nurses give me another IV dose, and then some sub-cut morphine when the pain only dulls slightly. I watch the nurses make the same face I have dozens of times – that one where you see an abnormality in the vitals but don’t want to panic your patient, but even intoxicated I have nurse powers. I ask what’s wrong and they tell me my systolic blood pressure is only 90. I laugh a little, relieved that this is all they are worried about. I reply that in these types of situations, anything above 85 for me should be considered a bonus, my blood pressure thinks it’s still 2003 and getting low is the trend du jour.
I promise myself I’ll stop backseat nursing as I am wheeled back to the ward.
You can’t really trust someone as high as I am right now though, can you?
Endometriosis is often called an invisible illness, and it’s not a statement I thought too thoroughly on until this time last year when my symptoms began to flare and didn’t stop for ten months. It was invisible to my colleagues when I was a student nurse, trying to make it through my final placement as the pain began to creep into each week, insidiously, more days each month, like a slow growing strangler fig taking over a once blossoming tree. It was invisible to the young resident in emergency trying to decide if my excruciating, syncope-inducing pain was a mere flare up or something more sinister, frowning and dissatisfied as he tried to feel the anatomy beneath his finger tips. It was invisible to all but my surgeon, who looked inside to find what he was looking for, what he had suspected since I came to see him in June – the unseen became seen. A hunter of invisible game.
What he found was adenomyosis, a dark cousin in the endometriosis family, where endometrium grows into the muscle of the uterus. My uterus, party child that it is, had adenomyosis growing out it’s front, which the surgeon quickly took to with diathermy and inserted two Mirena IUDs to ensure plenty of local progesterone coverage to discourage both it and my endometriosis from planning further hostile takeovers. It provided an explanation for the kind of pain I had been feeling – as though I constantly had a knife sitting through the centre of my peritoneum, throbbing and twisting at a moment’s notice. Pain that radiated like fire down my legs and into my back, making walking or moving a task on par with climbing Everest. Central, inevitably horrific stabbing pain when any doctor or nurse dared examine my abdomen. Adenomyosis fit the bill on every occasion. It helped me complete the puzzle, the something that was missing from every explanation I tried for what was happening.
Adenomyosis suffers the same invisibility as endometriosis, even more so, especially among health professionals. It particularly tends to erase younger women – as many doctors will hold fast to the notion that adenomyosis is a disease of older women and not even consider adenomyosis in their diagnosis. Though if one is considering endometriosis as part of a differential diagnosis for pelvic pain, adenomyosis should appear alongside it in considerations. Something that I, once again, learnt too late and after the fact. As I continue on my endometriosis journey it becomes even more sharply focused how little I was taught about what is normal or not, and about pelvic pain. It also becomes clearer that this is something that needs to change for the next generation. The earlier endo and adeno are found, the more treatment options are available, damage to organs can be prevented, and fertility more likely to be preserved. Moreover, the earlier one is diagnosed, the less one has to suffer with pain, with uncertainty, and with all of the painful emotions that come from years battling a disease that no one else can see.
If you have an invisible disease I encourage you to make it visible by talking about it, helping to raise awareness and educate people. The word endometriosis should be as well known and understood as other diseases that are as common, such as asthma, diabetes and breast cancer. Keep the conversation going. We have only just begun to speak and now that others are listening, we must persevere. To do right by those who have spent their lives doing battle with this condition, and to create a better experience for those that will come after us – our daughters, young women who just now are beginning to feel that something isn’t quite right; they deserve better than what we have had to endure.
Through the empires of dust, I chant your name, I am the hunter of invisible game.
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The time is 2:57 am
I am struggling to keep my eyes open in the darkened nurses station. My next medication round doesn’t start for close to an hour and I have completed my documentation. The feeling overcoming me is unsettling, there is seemingly nothing to do on my busy medical ward and that is always inviting trouble. Do not think the ‘Q word’, even thinking that it’s quiet is asking for it. I yawn and right on cue a patient’s son comes out of his room, his eyes filled with tears.
“Sister I think he’s gone,” he says.
I have been looking after his father, a palliative patient in his final hours since I began shift. I have written up several doses of dilaudid for him over the shift and moved him into a comfortable position. He has looked peaceful all shift, his son wiping at his mouth and whispering “come on Dad, you’re too stubborn – you can go. Mum’s waiting”. I relate, I tell him my Nanna was the same – held on right until we all went for cake, then she decided that there ain’t no party without her, and rightly so. He smiles and tells me his Dad is the same.
My night started at 10:45pm.
I go in to see my patient. He has no respiratory rate, his pupils do not react when I shine light into them, and there are no pulses. Despite all obvious evidence that he has died, I have to wait for the doctor to declare him. At this time of night that’s medical ward call, and I know he is slammed. He’s run past on his way to a code three times already. Three of the other nurses have pages into him for patient reviews. I know it may be some time. I leave his son to say goodbye, and page the doctor. He is gone, but I have seven other patients who are still here, and I have to keep looking after them.
I spike fluids, draw up antibiotics, turn bed bound patients, and have an interesting conversation with a very confused patient. An entire shift happens in the time it takes for medical ward call to come. A son grieves, and it isn’t until I handover that my patient leaves his room for the last time and the porters take him to the mortuary. His son gives me a long hug and whispers thank you.
It’s 12:10 am.
“Hello sister,” the nurse whispers. “How are you feeling? Are the walls melting?”
I laugh and tell him no, but that my pain has mercifully become a background noise instead of an unrelenting torrent of abuse to my lower abdomen. It’s freezing and he gets me another blanket and a heat pack, because there’s very little that a heat pack won’t make better. When my infusion finishes he removes the IV cannula smoothly so that it won’t leave the same bruise as the last time I ended up in emergency, where the resident practically ripped it out of my hand.
“Should I get the doctor? Do you want to go home and be a nurse again?”
“That would be nice,” I murmur, thinking about the shift I can no longer go to that starts in six hours.
His night started at 6:45pm.
He had many patients before me, and by the end of twelve hours he will have had many more after I am gone, but while I was there he looked after me the best he could – the way I would my patients. I started my night in triage, then fast track, sitting when all I wanted to do was lie down. The nurse that did my vitals in triage looked like she wanted to give me a hug when she found me curled over in my chair, pain 9/10 – because as a nurse I feel like there’s always room to grow. Then she told the triage nurse to re-think my category, because I needed to move up. Then there was the night nurse in fast track who I overheard tell the doctor, in no uncertain terms, that he was not to ultrasound me in this condition unless he actually suspected ovarian pathology – well, I wanted to hug her. There was the doctor I was assigned – overrun with his own patients, as well as signing off on the work of his residents – who apologised every time he left me for more than five minutes, murmuring “sorry my dear” each time he sat back down, and wouldn’t accept my unrelenting pain as reality until he had done everything he could to stop it; even in the face of “normal” results.
I know they were tired, I know they were busy – because I am all of these things on night duty, and yet their care did not diminish. Their touch remained gentle, and their resolve remained strong.
In these dark hours we do some of our best, our most vital, and, yes, at times some of our saddest work. Night duty is an underrated shift, in my opinion. On nights I have had some of my worst moments – patient deaths, big codes, falls, body fluids all over my uniform, but I’ve had some of my best too. There is a special kind of camaraderie and friendship on nightshift – perhaps because management has gone and it’s just us floor nurses. We have strange conversations between pad changes, and sometimes even serious ones that wouldn’t have slipped out any other time. Those special, privileged moments where we bring in new life, save lives, or help someone come to the end of theirs with dignity and comfort all seem to happen so often in the midnight hour. The hospital changes. Sometimes, on meal break, I walk its quiet halls in a fatigued, slightly delirious stupor, enjoying the quiet and stillness – so different from the day time. Often it’s the only true quiet I find all shift.
It’s hard work, we are tired, and the problems are often big and emergent, but there is a poetry in it. For me nights have a rhythm and a flow, and it can change so quickly, but I think that’s what I love even more. Nights call for a type of bravery, for courage – sometimes you realise in any given situation that it’s just you and you alone must be enough. Resources are scarcer, hand holding is out of the question, and advocacy is perhaps your most important skill alongside a good chest compression.
It’s not often one sees their profession from the other side, but when I do I am reminded of just how important the small and everyday things we do as nurses are. I don’t keep track of how many times I touch a patent’s shoulder when I talk to them, or call a sweet elderly lady honey, or tell someone in pain how well they’re doing – but it matters. It matters when our colleagues in medicine do too – no matter how busy or burnt out, your small mannerisms loom large in the minds of patients. My surgeon likely barely notices when he tells us, “chin up, hey?” and holds our hand, in holding bay before we go in, but I know we as patients do. A patient often doesn’t see the bigger picture, they don’t see our patient load and politics, our policies and procedures, they see themselves – sick, scared or in a place they’ve never been, and so they need us. They need our little gestures, and our advocacy, and our care. We must not forget the privilege that is caring for people, even alongside its many challenges.
Goodnight patients, goodnight sisters, goodnight ward call, goodnight wardies and cleaners, goodnight day shift, and goodnight management. At dawn we return to our beds for much needed rest, we’ll see you again tonight.
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Dear Grad Nurse….
You possibly feel as though you know a great deal, but simultaneously nothing at all, at night, in a hospital, while you’re responsible for eight people. I know you’ve studied so hard that you’ve feared your head will actually combust, only to step onto a ward as a student – the anatomical landmarks of the kidney firm in your mind – only to find that you in fact know nothing about showering, or making beds the right way. You might feel both accomplished and useless at the same time.
That’s okay…I have too.
The graduate nurse role is such that one is constantly in a state of haze, wondering if one even knows what one is doing – hint, you do. This is the moment you’ve been training for, you’ve trained hard, and made it through years of soul crushing academia, plenty of practical experience, and a series of often deadening job interviews to get where you are, right now. You made it through having to narrate what you were doing every time you gave a panadol, and smiling and nodding when a patient asked if you had done this procedure before; you have arrived. Your first day without a preceptor feels like you’re a child left at home alone, as though someone is forgetting something very important – that you’re unsupervised and clearly shouldn’t be left alone with real patients. You’ll get over it, you’ll find that somehow, like muscle memory, you just fit. The feeling of being a child in a candy store will only increase when you realise you can go in the medication room unsupervised, make up the IV meds yourself, and, good grief, administer them to the patient without someone eyeballing your every move. You’ll feel like a real nurse when someone else, without thinking twice because there you are in that RN uniform, comes up to you and asks you to check their meds. At the end of the shift, when you write your note, you’ll feel a little heady and ridiculously happy when you sign them off and the signature line reads RN. It’s all you now baby.
Know this newbie, there will be a moment, a moment where you feel wise and sage, like you made it to the promised land. For me it came one late shift in my fifth month as a pool nurse. I was sent to cardiology for the shift, a third year student nurse following close behind. I was tired, it was my fifth shift that week and eight hours stood between me and four days off. Little did I know, that shift I would put on my grown up nurse pants and prove to myself that I was leaving grad behind, and that no matter what I had thought as a final year student – I was a damn good nurse. First, I had a patient outlied from the upper GI ward, one of my favourite surgical wards, she hadn’t eaten in days and the treating team had charted her for parenteral nutrition – food in a drip basically. The team leader came to me and said that she would try to get the TPN nurse in to help me, but that it was likely she had already gone home. I was confused, and asked her why I couldn’t do it. She looked suddenly overjoyed.
“Oh, you’ve done TPN before? Sorry, I haven’t in years, we don’t usually have these patients here,” she said.
“It’s fine,” I told her. “I’ve worked on the gastro wards where we do this all the time.”
When I went to the medication room to prepare the TPN, done by rolling a giant plastic bag filled with fluids until the inner chambers break and they all mix together, three of the cardiology nurses asked if they could watch. I laughed a little to myself, did they seriously want to watch the grad nurse break a bag? But I did it, I told them my secret that Donna on UGI had taught me as a student to make sure the bag didn’t just explode, leaving hundreds of dollars worth of medications on oneself and the floor. It was all me.
Later on when they analysed telemetry for the end of shift, I asked if I could watch, because there’s always something to learn in each specialty.
Later in the shift I received a train wreck of a patient from emergency, and the handover had failed to reveal the code criteria vital signs the patient had been sporting for the last hour. I told the team leader and said that I was calling a code, because our doctors were gone and medical ward call would be swamped. This would get everyone in a room and swift action would be taken. I didn’t want my patient sitting tight with a blood pressure of 240. My favourite med reg attended the code, I told him what was going on and that I thought she was fluid overloaded, he examined and agreed, telling me he would write me an order for a frusemide infusion. The team leader came over to me and smiled, raising her eyebrows knowingly.
“Grad nurse kills it again, God I love pool.”
The med reg looked surprised and asked if I was really a grad. I said I really was. I had the moment, the one my nurse manager had promised I would have when I started. I hadn’t wanted to believe him, thinking it would take me years to feel as though I was in fact a valuable member of the team, an asset and not just a bandaid solution to save the shift from being short staffed. The moment happened though, sooner than I thought it would, and it felt good.
Trust me when I tell you then, that there will be a day when you look behind you and realise that you made it. There is still a long way to go, such is the beauty of this profession, but you will come so far so quickly that it will be nearly incomprehensible how you have grown from student to practitioner, and even to teacher. Nothing demonstrates to you how much you know quite like having a student nurse ask you questions, because they don’t usually know just yet that half the time you have no idea either.
It’s a privilege to do what we do, you will come to realise, poop and all. That pad change at 2am may kill you a little inside, but it means everything to the person you did it for – the person who is no longer lying in their own waste, the person who is now positioned comfortably on clean sheets. You know the feeling when you climb into bed after night shift, the bed yielding beneath you, hugging you, welcoming you? Your pad change and reposition just got someone closer to that feeling. For every seemingly small task, there will be bigger ones that you will face and being part of them is the honour of this job we call nursing. The night shift where you watch a palliative patient take their last breath; the code where you pound a chest because when someone’s time is up you want to be able to say you did everything you could to save them; the diagnosis you help a patient through after the doctor is long gone; the hand you hold of a terrified patient before the midazolam kicks in before theatre – these intimate moments are ones you will be thankful for being a part of, because you are good nurse. Whether grad or seasoned veteran, you have the power to change patients for the better, to be of comfort when there is fear, so never forget it. When things get tough and you doubt yourself, because you will – you will spend a lunch time crying in the bathroom at least once, this is what you must remember.
You know more than you think, so long as you’re willing to learn. You’re stronger than you think, so long as you’re willing to listen to your patients and your team. You will keep getting better at your job, even if you feel like you’re getting nowhere – trust me on this. Nursing is s team sport, use your team, learn from them, and use them to help you do your job better, to better serve your patients. Find out which specialty makes you happy, and remember that it’s okay to completely hate some. It does not make you a bad nurse, it does not make you unappreciative of your work when an area isn’t your cup of tea. One can be so many different people in the world of nursing, there’s no reason you should have to love being all of them. You’ll find your tribe.
Today I am no longer a grad, but I am still learning and always will be. I am no longer a grad, but I still doubt myself sometimes, as do we all, and as will you. Today, new grad nurse, you are where I was and one day you will be where I am, just as I will be in the shoes of my senior colleagues. It’s a hellride and a joyride, so get in there and enjoy it.
That’s how I got here.
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She is funny, because there is no other way, in her opinion, to face each day. She is shy, introversion has always been her default and she is perfectly comfortable to be lost in the world on the page rather than the world around her. She dreams big, ambitious dreams, years too soon, always planning what will be when she tires of what is now, imagining that one day her life will be a certain way – just the way she likes it. She is kind and a loyal friend, but stand between her and the chance of a top grade and you’d be better off dead. There is an unrelenting fire inside that pushes her to do more, be better, and not accept good enough from herself, sometimes too much. She is all of these things and more, she is young and probably pretty naive, but that’s okay because there is still time to learn all of the things that make us older and wiser.
She is gone, but she used to be mine.
I was fifteen years old when I started to feel the pain that I have come to recognise as my endometriosis pain, just beginning to figure out who the hell I was and wanted to be. I know that endo changed me, before I even knew I had it, because it was inevitable – it was always going to be that way. When my first thought about my pain was that it was normal, and not something I needed to worry about, it was inevitable that the experience would change me as a person. When I couldn’t cope with the pain, I blamed myself, told myself to be stronger, to suck it up. Doing that burdened parts of my mind that I hadn’t dealt with before. As I got older and I began to question the pain more, I started to listen to other people who told me it wasn’t as normal as I had convinced myself it was. Questioning became worry, and worry lead me to my specialist for the first time. Then I spent another year and a half, battling with myself, about whether I had endo or if it was just me as I had always thought.
Who at fifteen years old is equipped to deal with the burden of a crippling pain of unknown origins, hoping that it’s just your period, but deep down worrying that it is something more? After “she” got involved, and I began to deal with my pain and confusion in maladaptive ways, I knew it was time to grow up. The real world awaited, because I had just been thrust into it, big time. Of course I clung to the safety of fifteen and sixteen, a place where one was expected to think about growing up and the future, but it was more than permissible to be lost in the present, being a stereotype of the typical teenage archetype. I lost track of the amount of times I told myself, “it’s just period pain, suck it up”. There would be times where I was not convinced of this fact at all, where the pain became consuming and I thought – this isn’t the way it’s supposed to be. Just as quickly the pain was gone, and I would forget how awful it was, thus assuring myself it was okay. Other people seemed to agree – other girls in my class said they had pain too, I should just wait until sixteen came around, then I could go on the pill and everything would be better. When going on the pill didn’t make things that much better, I again assumed it was my coping skills that needed work. This is the way it was, until I had my first surgery and Graham Tronc told me once and for all, this is not in your head, this is not just period pain, this is endometriosis.
After I was diagnosed I began to think about fifteen year old me.
I still think about her now, what she would have become if she didn’t have endo, if she would have been almost the same, or fundamentally different. I like to think I still have her sense of humour, her loyalty to friends, and maybe even a bit of her “give me perfection or give me death” approach to academia. I have rediscovered her ambition, and I still plan things to take a break from reality, just like she did, but I am much happier in the present than she was. Sometimes I wish I could re-write parts of her story, to take away the pain she felt and the sadness it brought. When I think about this, I am reminded of a surprisingly sage quote from my boss after my first patient death. He said to me, “part of me wishes I could take this feeling from you, so you wouldn’t have to feel the angst, but another part of me doesn’t want to because I want you to learn from it”. Endo changed me, but I can’t say it never gave me anything I could use either.
It’s normal to grieve for the person or the life you had before endometriosis, especially if your endo journey has taken a lot of what you once had. Endo brings so many challenges – pain, fatigue, sickness, infertility, social isolation; but it can bring other things too. Take a moment to think of some of the things that endo has given you. They may not be obvious at first, but I’m sure amongst all the disappointments (and there are so many, I know), there are parts of you that are the way they are because of endo, for the better. When I see women with endo, I see strength, because how else would we have survived all of this? I see women who are strong enough not only to do battle with their illness every day, but to help others deal with theirs through education and awareness. I see women smart enough to cope with multidisciplinary issues, to keep track of multiple medications, appointments and treatments, all while dealing with exhaustion and fatigue. I see women who are tenacious enough to keep trying, even when they face barriers, to seek another opinion, try another treatment, or speak up when they were told to be quiet. By all means, take the time to grieve the woman that you used to be if you feel that she was lost along the way. Give her the respect she deserves, leave her in the life that was before, honour her. But do not forget to celebrate the woman that you became, because there are so many great things about her too, you just have to see it. I see it.
Endometriosis may have brought me pain I didn’t realise existed, confusion, loneliness, and, at times, the questioning of my sanity, but when I look within myself and the people around me, I see how much it gave me. It gave me a voice with which to advocate, to educate and to help, where before I was quiet and believed what I was told. It gave me strength, when I was sure that I had none, because I had no other choice; I realised all of the things I was capable of doing despite horrific pain. It gave me a purpose, where before I had a drive to care, and to help, the same drive that lead me to become a nurse; but now I have focus, I see clearly the people whom I want to make things better for, my endo sisters. Most importantly, endo gave me a second family, full of exceptional women who look to the skies with the same hopeful and determined ambition as me, where before I was satisfied with my own company and the conversation in my mind. The most important thing to learn from your experience with endo is that you are never alone, not really, because one in ten of us know exactly what it is to be thrust into a new life and a new world with no idea what to do next. We roam the world that is endometriosis like travellers in a foreign country without a map, but others help us to reach each place, even if they’ve only just figured it out themselves. We walk hand in hand, because we go far when we go together.
As for fifteen year old me, I hope she’s happy back there in 2010, before all of this, when her biggest problem was the B she got on a paper instead an A, or whether she would get the good biology teacher next year {don’t worry girl, you so did). I hope that if she knew who she would become, that she would be happy that she became me, despite the path she has to take to get here. It’s pretty okay here in 2018, enjoy the ride.
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Reflections from a new member of an extraordinary organisation.
Imagine a place where you feel accepted and understood; a place where you are welcomed with open arms and a warm smile. Imagine a place where you are surrounded by amazing women, who are united by a common goal and fuelled by common experiences; a place where no tragedy is taboo, no tear is shed in vain, and you don’t have to be alone. For me that place is Endometriosis Queensland, more commonly known as QENDO. It’s more than just a support organisation, it’s a family.
Founded in 1988, QENDO came from humble beginnings – a group of women determined to make a difference – their goals support, education, and awareness. The spirit of our founding members has carried through the decades and seen QENDO evolve into the organisation it is today, thirty years later. QENDO is tenacious and passionate in its mission to make endometriosis a known name to every Australian, to provide evidence-based and up to date resources for sufferers and medical professionals, and to facilitate support on an individual and group basis across a wide area.
Our thirtieth year has been one of tremendous growth and achievement. Our EndoMeets are a QENDO institution, and 2017 and 2018 has seen the rapid expansion of these meets from the Brisbane Metro area to eleven locations across Queensland, including regional areas. Our facilitators come from far and wide, their connection to their communities palpable in every meeting. In 2018 QENDO held a three part education series, our featured speakers not only doctors, but allied health and the women behind QENDO. It was a privilege to bear witness to the wonder and curiosity of those in the audience, many of whom came up to me after each event overwhelmed.
“I didn’t even know things like this existed,” one woman said to me, nearly in tears. “Thank you.”
Our smaller spotlight education events “An Hour of Endo With QENDO”, in partnership with Eve Health, inspire a similar following. Even the seasoned endometriosis warriors among our committee found themselves learning things they never knew before, determined to keep trying new ways to improve their quality of life and manage their symptoms. I have seen a transformation around me, women in the dark are stepping into the light and finding that they are not alone, that there is help, and most importantly – there is hope. Education is transformational, and I have been so thrilled to be a part of the provision of quality education in 2018 through QENDO.
2018 has also seen the announcement of the National Action Plan, the result of partnerships between Australia’s endometriosis support networks that would come to be known as the Australian Coalition for Endometriosis (ACE). Our hard-working and inspirational president Jessica Taylor has been essential in helping this come to pass. She is a force to be reckoned with – never giving up, fuelled by her passions and a notion that we deserve better, and so does the next generation. The work Jess does for QENDO cannot be understated, she gives it her all, and inspires all of us to dream big, work hard, and make QENDO everything it can be and more. Her leadership has produced a team of women that I adore working with, every one of us with our own endometriosis journey and area of expertise that provides our members with the best we have to offer. Additionally, our partnerships with medical professionals committed to best practice for endometriosis patients helps us to provide for our members. Many doctors have been long time QENDO supporters and have helped us with education resources, support clinics, and of course our education series and Hour of Endo – they include Dr Susan Evans, Dr Peta Wright, A/Prof Anusch Yazdani, Dr Graham Tronc, and Dr Donald Angstetra. Our partnerships are part of what makes it a pleasure and an honour to work with QENDO.
QENDO boasts the only endometriosis support line in Australia, a service accessible internationally. That’s where this newbie comes in. I joined QENDO in 2016 after my diagnosis in November 2015. I can still recall at eighteen being handed a neat blue business card with the damsel fly on it by Graham Tronc, overwhelmed by the half hour that had just been. I picked it up again when I was nineteen, awaiting surgery, looking for some reassurance that what I felt was endometriosis and not in my head. Once I had my diagnosis and came to terms with the what would be my new way of life, I wanted to do more. Jess answered the phone when I called about being a support worker, we spoke for nearly an hour – I was in. After being a support worker for a year Jess offered me the opportunity to be support work coordinator, taking over from the incomparable Darlene Scott who had done an exceptional job in the role for many years. I was honoured that I was trusted to take on such a role – support workers are the heart of QENDO, they answer support calls and are present at our events to ensure women with endo have somewhere and someone to turn to. It’s been an amazing eight months so far. I manage an extraordinary roster of support workers, women who have been through so much themselves but are so willing to use those experiences to help others. They do so much more than our support line. They accompany women to their appointments, answer questions at our events, and link people to doctors and health professionals that will understand what others have failed to. It is an honour to be part of this team and I am so proud of my support workers.
At Saturday night’s Gala Dinner we celebrated 30 Years of QENDO with style, surrounded by our supporters, friends, and families. It was a pertinent reminder that we are a part of something extraordinary, a long tradition that came before us, and a legacy that we will bequeath the next generation. I have only been a part of QENDO for a short slice of 30 years, but I hope to be a part of it for as long as our QENDO Advisor and founding member Jude Perryn. We are determined, we are strong, and we are just getting started. A quote from a favourite Sylvia Plath poem, ‘Mushrooms’ seems fitting:
In spite of ourselves, our kind multiplies.We shall by morning inherit the Earth. Our foot’s in the door.
Happy 30th Birthday QENDO, thank you for letting me be a part of something extraordinary.
Why The National Action Plan for Endometriosis Matters
Don’t cry, keep your shit together sister, he’ll think you’re a lunatic.
This is what I told myself at eighteen, sitting in the office of my new specialist, trying to not to completely lose it when he told me, firmly, that my pain was not normal and I didn’t have to live with it – he could help. After so long convincing myself that there was nothing to be done but learn how to suck it up and carry on, I wasn’t prepared to hear that a) the pain wasn’t normal and b) that I could find out why and treat it. I thought about the classes I had sat in, scared that I would pass out from the pain, telling myself to just hold on, each minute an eternity. I thought about the people I had told, the ones who told me it was normal and I just needed to change pills. It sucks, they said, but we all have to put up with it. Had all of this turmoil, this suffering and angst, had it actually been for something real?
It would appear so, judging by his kind reassurances and the surgical consent form he waved in front of me. Safe to say, I did not keep my shit together, not even close.
By the time I received my official diagnosis, endometriosis, at twenty, I had been having symptoms for five years. Five years of people doubting me, and me myself. Five years of worrying that I was crazy or weak, unable to cope with my biological inevitabilities. Five years of feeling alone and misunderstood, like nobody, not even people who loved and believed me, quite understood what it was like. My initial feeling was one of immense relief, for a name to call my torment and a plan to banish it. This soon enough gave way to grief, for the girl I lost in going through the pain and the consequences that came with it. Eventually even this passed and I found a gentle acceptance, my pain was well controlled and my wonderful doctor had done his duty, he kept his promises. Then I found QENDO. Gentle acceptance became community, and education lead me to another place: anger that I, or anyone, had to suffer because of the doubts of other people. So it came to be that I joined a band of fearless and determined women whose goals were support, awareness and education, but also to make a difference and not accept the current state of things – the doubting, the waiting, the dismissing by doctors. We wanted more for ourselves and the next generation of women who would unfortunately be unlucky enough to do battle with endo.
That’s why every one of us experienced a special kind of joy when the National Action Plan for Endometriosis was launched last week. The plan is thanks to the tireless work of women with endometriosis and members of the Australian Coalition for Endometriosis (ACE), as well as hard work by MPs Gai Brodtmann and Nicole Flint to bring endometriosis into the parliamentary spotlight. The action plan sets out to improve awareness, treatment, understanding of and research into endometriosis. Most importantly, it is a public acknowledgement that the treatment of women with endometriosis has not been satisfactory and more needs to be done to improve our quality of life and improve everyone’s understanding of this disease that effects 1 in 10 Australian women. This plan means something incredible to us, and everyone should know why.
It is for every teenage girl told that her pain is just women’s business and she needs to get on with it, or stop complaining. It is for every woman who makes it through the day, only just, just so she can make it home to lie down because her pain is killing her. It is for every partner who doesn’t understand why you can’t have sex, or why you cannot go out, not tonight dear God, or why you may not be able to have children. It is for every time you think, ‘I cannot do this anymore’, but have to anyway because endometriosis is not a job you can quit or a lover you can leave even though it causes you nothing but pain and heartache. It is for every woman whose own doctors didn’t believe her, take her seriously, or just waited too long to say ‘hold on, maybe this isn’t okay’. It is for every surgery before finding the right specialist, and the scars across our abdomens that tell the story of the ones who came before who didn’t quite get it right, or who didn’t quite fix it. It is for every one of us who thought that things were okay now, only to find themselves back in pain, back in familiar offices asking ‘why is this happening again?’. It is for every woman who has to watch the negative pregnancy tests pile up, and her money go just to catch a glimpse of her dream to have a family, sometimes never grasping it, or sometimes for only a moment before it slips away again.
This plan means so much to us because in one way or another all of us have suffered disappointment, misunderstanding, or apathy when we share our condition with the world. Most of all, we have all experienced pain – pain beyond belief, pain we probably thought we could never endure until we weren’t given any other choice. It no small feat to have that acknowledged on a national scale with plans to change this reality. It will be hard work, and the fight has only just begun, but there are many of us prepared to stand up and be part of it. Women are coming out of darkened rooms to the light of a new day, looking around to see that they are in fact not alone, quite the opposite.
We see you, I see you, welcome to the sisterhood, we’re so glad to have you here.
Read the National Action Plan Here: http://www.health.gov.au/internet/main/publishing.nsf/Content/58AD1EF08402AC9FCA2582D5001A271E/$File/National%20Action%20Plan%20for%20Endometriosis.pdf
She taps me on the shoulder, my hungry, doubting companion. She’s always with me, like a jealous streak, a trick knee, a weak stomach, a bad heart, this hunger is DNA you cannot undo.
– Giselle, Skinny by Ibi Kaslik
I am sitting in an uncomfortable chair with an unfortunate red and teal pattern, opposite from the deputy principal while he looks at me with an apprehensive expression. With tented fingers he looks at his desk, trying to think of something to say to me, and settles on asking me how I can enjoy throwing up. What he fails to understand is that I don’t enjoy throwing up, but that isn’t even close to being the point. I don’t expect him to understand, in fact I don’t even want to be having this conversation, but the guidance counsellor is an over-sharer. Do people really think that bulimics purge because we enjoy throwing up? As though vomiting is some hidden aptitude that makes me look down into the toilet or sink with pride and say, damn fine purge, damn fine indeed. I lean back in the chair and let my gaze drift to the window with its crooked Venetian blinds. This is not the first time I have heard these questions, the few people that have come to know about my condition have asked, but I struggle to answer. They do not come right out and say it, they resist in the name of polite conversation or the facade of respect, but it gnaws at them, like an itch they know they shouldn’t scratch, until they cannot help but come out with it – why do you do this? I long to tell them that I don’t exactly know myself. There is a dysphoric feeling that I cannot identify, there are anxieties and insecurities, but there is no simple reason why; so I mutter something about it being complicated. People do not often like this answer, it is not satisfying to them, it isn’t simple.
I have come to understand that people crave simple answers. They like simple cause and effect relationships. As a nurse I have seen the longing for these simple answers in the eyes of patients, desperate to pinpoint an instance in their timeline that has led them to their current state of being. I understand the appeal. It’s comforting to have straightforward reasons for why things happen, especially in a world where few things are certain.
However eating disorders are not a simple disease, and they do not have simple reasons behind them.
At first she is a whisper, and my sensible self easily dismisses her or shows me the “right” thing to do, but from the beginning she intrigues me. She is me, she speaks with my voice like any other thought a person might have, but somehow different. I will come to realise that she is the voice of my bulimia. She appears out of nowhere, an apparition, sent from hell or heaven I’m unsure. She is as sweet as syrup on pancakes, encouraging me, telling me how smart I am, congratulating me on this newfound power I have discovered within myself. In English class she whispers to me, doesn’t that feel great? You can feel it anytime you want and no one will ever know. My other thoughts immediately chase her off, telling me that not eating is a stupid idea because I’ll get hungry, eat, and hunger will control me as it always does, as it does anyone – the drive to eat is the drive to survive and I must surely want it that way. I hear my other thoughts and accept their logic, but she knows that I have heard her and that I am quietly curious about what else she has to offer.
The quiet chug of the train is soothing as I lean my head against the window. The world outside is cloaked in the dark of night and watching it fly by brings me momentary peace from her tiresome voice. I have a thick pathophysiology textbook on my lap and Bruce Springsteen sings a mellifluous tune in my ears; I am transported to the Asbury Park boardwalk, I walk through the darkness on the edge of town, and I face a wall of fiery light with a firefighter. The carriage is empty and I am alone not only physically, but with my thoughts too. In these dark hours her voice is quiet, and more logical thoughts slip into the front of my mind. I question why I am doing this to myself, her voice becomes a source of fear and helplessness. I don’t feel in control anymore, instead it is though she controls me. I crave control so badly that cannot let her go, even as I begin to realise that I am sick. She has helped me through year eleven so far, praising my triumph and keeping my head in the game when I fail; sometimes she is cruel and mean, but she also takes care of me when I think no one else understands.
I am travelling from Varsity Lakes back to Brisbane after my university class on a Wednesday night in July. I have started taking a first year communications course at a university on the Gold Coast, a program open to year eleven and twelve students with high grades and faculty permission. Due to the distance it takes to travel to the campus and my array of extra curricular activities human biology with the practical and lectures on different days is out, so is Monday morning law and society. I don’t mind though, because access to collections of journal articles to add some much needed collegiate pizazz to my high school work is reward enough, true nerd that I am. Wednesdays completely to myself are another perk, one that I am more than happy to indulge. It is my escape, a place where I do not have to worry about who sees what. It is a whole new dimension of my intoxication, being able to sit in university classes as a fifteen year old and not only keep up, but excel. This is another reason, it occurs to me, why I cannot give her up; other people had already burnt out in year eleven and more would surely follow, but she made me feel protected. I have managed to excel in spite of my crippling anxiety, in spite of my pain, in spite of everything. Everything is fine, and everything would be fine. I whisper this to myself as watch the world fly by, my stomach empty and aching.
‘I’m fine’ is one of those lies we tell ourselves, right up there with ‘I’ll start tomorrow’, and ‘I don’t need to write that down because I’ll remember it’. For one reason or another everyone tells themselves little white lies to get through the day or justify whatever behaviour. I would tell myself that what I was doing was no big deal. It wasn’t at all a problem that I frequently went without eating, tried to throw up what I did eat, and had panic attacks. It wasn’t a big deal that when I eventually gave into the normal cues of my body and ate, or worse, ate something indulgent, I hated myself and had to endure some sort of punishment. That was all totally fine. Fine is one of those words that rarely ever means what its supposed to, because we’re always using it to lie.
My first day on campus I discover a veritable cornucopia, located on the fourth floor of the university library. I have never been to a university library, only the paltry collection at the local council library, and though in year twelve I will take a class at the University of Queensland where there are multiple libraries across three campuses, at fifteen this one is still compelling. Medical books are my kryptonite, and I will spend many hours pouring over the books in this library. I read surgical manuals, case studies, anatomy textbooks and physiology books on every topic from haematology to endocrinology to microbiology. As I examine the pages, with the studious work ethic of a fourth year medical student, I am doing more than just reading for fun. It’s as though I am trying to uncover some kind of anecdote to the maledictive thoughts encroaching my mind, as though the secret is hidden in these pages. Part of me is desperate to understand the body’s complex machinations so that it won’t matter what I do to myself, because if I understand how everything works then I can fix whatever happens. Deep inside is a terrible fear that what I am doing is deeply damaging, and buried deeper is the familiar yet confronting dysphoria that drives my illness. I am finding myself coming back to the same books, and keep coming across a familiar name: endometriosis. It’s a disease I’ve heard of, thanks to a book I read at fourteen where the troubled protagonist finds herself with endometriosis towards the end of the story. It does not even occur to me that this may be what afflicts me. The descriptions are violent, blood pouring, the pain brutish and unyielding. I think that I cannot have such a disease, because I function, because I enjoy moments without pain, and endometriosis seems like a disease of women who lie in bed, crippled with pain, unable to function. Yet I find myself drawn back to those books, the surgical manuals, the obstetrics and gynaecology case studies, because a part of me wonders if there’s some concrete reason for my worsening pain that isn’t just my failure to cope. The problem with my acquisitions is that I have only learned enough to pique my curiosity, enough to scare myself when things begin to feel less than normal, which only makes my anxiety worse. Knowledge begins to feel less powerful and more terrifying, but I maintain that I am fine. I am different from everyone else not in spite of her, but because of her, I will not burn out, I am stronger than that. I reassure myself, even as my breathing quickens and my heart pounds. Even as I know every word is a lie.
We do this against our better judgement, we pretend there is nothing wrong when to an outside observer things so obviously are. It is a special skill, not only for those with eating disorders, but for many women with endometriosis. So often, despite years of trying to have our pain taken seriously, we brush away those every day symptoms, we pretend everything is okay. Often times I feel that the chronicity of our disease leads to this need to show a face to the world that is well. As though our pain will only be tolerated for a certain amount of time, or that people have a finite capacity for sympathy. If we’re in pain or suffering for a little while, it’s okay, people want to understand and help; but be like that for too long and people lose patience.
Aren’t you better yet?
I felt this feeling press down upon me when I finally blurted out my secret to my teacher. Not from him, he was always supportive, and not even from my parents who I felt the need to shield from the extent of things, because I hadn’t yet grasped how deeply I was lost in my thoughts. It was this hard to describe feeling that permeated my conversations with those more removed from it. Other teachers and administrators, the guidance counsellor, there was this vague question that hung in the air when they asked how I was. They were asking with a particular answer in mind, they wanted to hear that I was better, even thought it was nowhere near that simple. So I said yes. I learnt how to give people the answers they wanted to hear because at heart I am a shameless people pleaser. I did to everyone, including my psychologist. I didn’t want her to think it was worse than it was, otherwise she might think this was full on, drag off to a program, bulimia, and might want me to go to a psychiatrist. I had ten free sessions, and as far as I was concerned, that was all the time I had. I didn’t really know how much eating disorder treatment cost at sixteen, but I knew it could be a lot. Like so many other things I told myself I would be okay, because I didn’t quite understand how much of a slippery slope my habit was. I had to be better, that was it. Everyone would be happy and things would be easier if I was better.
The Butterfly Foundation has in the last few days released the results of a survey into the financial burden of eating disorders, and the figures show that we desperately need to do better. Among the statistics uncovered by this report is the astounding figure that 1 in 3 people had to go into debt in order to treat their eating disorder. Furthermore, 1 in 4 people had to delay or stop treatment due to financial burden. These are statistics that demonstrate firmly that financial burden is having an impact on the treatment of Australians with eating disorders, delaying or disrupting their recovery, and causing undue strain on sufferers and carers during an already difficult time.
The state of mental health treatment in Australia, including access to appropriate services, is already in need of serious attention and overhaul, but these new findings highlight the impact that poor access to public funded services has on patients with eating disorders. I wonder how many people with eating disorders thought as I did at sixteen…if I don’t get better, how will I afford this? How will my family cope? Do they feel the same guilt as I did over letting their once well guarded secret seep out and ruin everyone it touches, even though it’s the furthest thing from true?
We need to do better.
Source; The Butterfly Foundation, MayDays.
Ten sessions, an hour each. My psychological treatment totalled ten hours, plus a few more spent with my GP. They were extremely helpful, and I learnt so many effective strategies that I can say I still use. But you cannot cure bulimia in ten hours, no matter how “mild” you think it is. I did so much work alone and with unlikely allies, I had so many moments where recovery seemed so much harder than just surrendering, when that voice in my head that didn’t want to go back into the cage fought me every step. There would be times where I would make it for weeks, a couple of months even, and think that I had done it, that I was okay now, only to fall down again spectacularly. I can still remember sitting in the back of year twelve chemistry after a slip up one lunch, trying to get the taste out of my mouth. My chem teacher came to stand near the lab bench, once everyone was working and talking a bit.
“You okay?” she asked quietly.
I nodded, feeling ashamed.
“Did you do a thing?” she asked.
I nodded again.
“That’s okay, this thing you’re doing, it’s like a mountain, it’s okay to go back to base camp a few times if things are hard. I’m really proud of you,” she told me, still quiet enough that no one could hear her but me.
“Thank you,” I whispered.
Those moments and those people were the reason I got better at all. They helped me to find that place inside that wanted to be rid of her, that realised the real control was beating this – I wasn’t in control at all, this disease was, and I wanted it to stop. Would having money have changed things? Maybe, I cannot say for sure, but perhaps having access to more services would have made things easier. I wouldn’t have had to pretend so much, maybe I wouldn’t have fallen back on my mechanism of control so much, maybe, maybe.
Ten hours, that’s all the time I had to do battle with a well equipped enemy, one who was prepared to weather the storm, and often felt so much stronger than me.
During my final semester of nursing school where my pain began to return, I was quick to brush it off as related to the stress of being on placement, the familiar and unwanted thoughts I began to have about not being good enough, of feeling control slip through my fingers and desperately wanting to catch it again. The thoughts were so much like high school it was frightening. It was her. Eating disorders have a voice, and even though it’s yours it feels separate from you, something to be excised and quarantined. It doesn’t matter how many years you’ve gone without throwing up, without listening to that voice, it always comes back – and whether it goes again depends on how much energy you have to fight it. I was lucky I had enough strength left to fight both it, and my endometriosis, because humans have a finite ability to cope with multiple problems, eventually your brain gets fatigued with pretending. This is high school with IV pumps and scalpels. The cage in which I trapped her suddenly seemed to have a flimsy lock, and I was terrified my anxiety would smash it open. I was lucky to find a way to keep the cage door from swinging open.
Would another ten hours have helped change that? Would fifty? I can’t say what could have been for myself, but I can say that more than ten hours will help people acutely unwell from eating disorders. More resources, less financial burden, and less strain on patients and families can make a tremendous amount of difference. It is imperative that we do more to serve this population moving forward.
This disease is not glamorous, or something to be taken lightly. It is barbaric and secretive, it means going to war with your own body without knowing whether you’ll ever claim victory. No matter how many portraits popular culture paints of young women slipping into bathroom stalls to quietly be ill and emerging, smoothing clothing and going back outside like nothing is wrong, it will never capture the brutality one inflicts on their body. For one, it’s never quiet, and two, there is always something very wrong. Making yourself vomit is not a cute personality quirk or a little problem that can be fixed in one forty minute episode and a meaningful diatribe from a boyfriend or best friend about being perfect the way you are. Food or throwing up is a symptom not a cause – there is something deeper beneath those behaviours. Eating disorders require an approach that is as different as the men and women who have them, and we can do better.
We can and must, do better.
If this post has brought up any issues for you, please reach out and find appropriate resources, see The Butterfly Foundation for more information -https://thebutterflyfoundation.org.au/support-for-australians-experiencing-eating-disorders/.
I am lying in recovery after my laparoscopy, unsure as to how I am ever going to get up and successfully pee again, when she texts me. I am still anaesthesia drunk and I probably shouldn’t be allowed to text, but here I am. Within minutes she has called me a layabout, demanded I save her a biscuit and added “haha kidding” to her text as though I wouldn’t know this is just the way we talk. Considering that previously we’ve used a chocolate Easter bunny as simulacrum for women’s rights and victim blaming in an entire text conversation, I am unsurprised by her particular brand of comedy at this juncture. She is my best friend, has been since we were fourteen, and she is using this particular brand of humour because she knows that I need it to distract me from the fact that I am terrified of having gone through surgery, only to find that I do not have endometriosis – because I need a reason, desperately, for this pain I feel. We joke so that I do not focus too closely on the lump forming in my throat as I try not to cry. We laugh so that I remember, no matter what, I have her. That’s the way it’s always been, she has my back and I have hers. Not talking about it can be just as helpful as talking, and she knows the difference. She is who I share everything with, good and bad, knowing that whatever it is we can face it together. When I want to forget about my problems, or she hers, she is always up for fun, or ice cream. We can fill endless hours with our conversation, never tiring, and sometimes stopping only because the cafe lights have turned off, or the hour has passed midnight. Neither of us have siblings, and so we are sisters of another kind.
♥ ♥ ♥
It starts with a seemingly shy girl with gorgeous hair who asks me if I am here for PSYC1030. I say yes and ask if she is too. She says yes. We breathe the communal sigh of relief that is two first year students thankful that they have not committed the embarrassment that is stepping into the wrong class, and then having to extricate themselves from said class as casually as possible. Then I meet two other girls in stats class, one of them offers blueberries to the PSYC1030 girl. A squad is born. Each time we go out, we add another girl, until our squad is five strong, sometimes six. We plan timetables to be in classes together, pour over endless study notes, and eat our weight in pizza and Chinese food to help the process along. We somehow lack the talent for organising nights out, but still make them happen anyway, after long and arduous group chat conversations where we try and pin everyone down on the same night before the inevitable question of where to go throws everyone, as though we won’t just end up at Bamboo Basket or The Satay Hut as always. Each girl has their own beautiful soul that makes me so happy to be part of the group, because we are close, even when we are apart. There is the girl who can always tell when there is something up with me, even when I’m trying to hide it, and lets me know by looking at me seriously and saying “Danniiiii”, while we both try not to laugh. There is another who watches all the same television shows I do, and naturally we must share our completely valid opinions of every character on a week to week basis, even as we hear everyone else getting bored. Despite this layer of fun and superficiality, she is also the one that turns to me seriously and says: “you know you can tell me anything, right?”, before going back to our discussions of Grey’s Anatomy. Then there is the sweet girl with the blueberries that joined us all together. Her love of tea, candles, and all things wonderful fills me with endless joy, and every time we meet I am met with an optimistic eyebrow raise and casual question of whether I have anything to report, and by report she means dates for her to live vicariously through. The both of us end up living vicariously through one of the other girls anyway, and so we are happy together in our wholesome little bubble where books and candles are way better than dates anyway. She always has an understanding ear and a kind word for everyone, and being near her is like being in the sun; perfectly warm and bright. They are my beautiful squad, ready for anything, and always there when needed, and have been there for all of my endo dramas with sympathetic ear, and necessary snacks. When I’d rather be in bed because I’m in pain, I still drag myself up to go out with them, because they’re worth it – and sometimes the pain is easier to bear with them around. Even though we are scattered by circumstance, we remain the twisted sisterhood, always there for whatever each other needs.
♥ ♥ ♥
She is one of many endo sisters I have been fortunate enough to gain through my work with QENDO. We like the same music, share the same profession, and know what it is like to experience unimaginable pain and still somehow get through the day. She is the most tenacious person I know, which is always great news for QENDO because when there is a goal in mind, she gets what she wants. She is braver and moves faster than I, which means that sometimes I am dragged along into things I hadn’t planned on doing but am so glad when I do. She has an understanding ear, but is quick to pull me into reality when I need to take better care of myself, not letting me forget that I have to look after myself if I have any hope of looking after my patients. She is fiercely loyal, hilariously funny, and admirably passionate. There is no one I would rather work with on a project, vent to about a crappy shift, or share dinner with even when I should probably cook. I am lucky to have met and grown close to such a person in a short time, and have many more endo sisters like her who lift me up each day.
♥ ♥ ♥
Living with endometriosis is no easy feat, it presents challenges one never knew existed, and tries the very limits of mental and physical strength, It is a feat that requires teamwork, but finding the right team can be the biggest ask of all. Having endo can be an isolating experience, finding people who understand what it’s like to experience it and who are supportive even if they don’t know is an understandably difficult task. Yet it shouldn’t be, because one in ten women have endometriosis – surely there should be an abundance of people around who understand. Sadly this isn’t always the case, as endometriosis has only recently begun to break through into mainstream thought, media, and conversation in a big way. We have the generations of women who came before us to thank for fighting to get us to this place, as well as the current generation of endo sisters who are tirelessly working for recognition and education. There are still so many women going it alone on the endo front, and it shouldn’t have to be this way.
I have been blessed with understanding friends who supported me before I was diagnosed, and educated themselves once was, so that I know I don’t have to hide my endo from them – it is part of me, and so part of my friendship with them. In joining QENDO I also found home with an entirely new sisterhood of other women with endometriosis, who understand first hand what it is like to do battle with this thing we call endo for years on end. We share a passion for creating change and educating others, as well as providing much needed support. I felt embraced from the first time I attended an EndoMeet by women who pour their heart and soul into helping others, and so naturally I wanted to become one of them.
The importance of having an endo team cannot be overemphasised, and that team includes not just the friends and family who help you get through your days, but the health professionals that help you manage your endo. If I’ve learnt anything from QENDO, and nursing, it’s the importance of the multidisciplinary team and having more than one person to turn to for a complex problem. When I admit a patient to a ward, I do not work alone, I have doctors, physiotherapists, occupational therapists, social workers, and many other professionals I can turn to in order to create the most holistic experience I can for patients. One person cannot handle the task alone, you need others, because we all have our own knowledge base and experiences that can contribute. Endometriosis treatment can be thought of in the same way. Your health professionals are members of your team and part of your endo toolbox, which you can draw upon to help manage the challenges presented by this complex disease process. Don’t allow yourself to be alone when you can have your very own endo team. I’ve got mine, who will be yours?
The West Wing – And It’s Surely To Their Credit
Because of you I am a good nurse.
My favourite preceptor never introduced me as his student nurse to the surgeons, I was always his sidekick. The first time I played scrub nurse it was for the morning orthopaedic list with the upper limb surgeon. After I carefully scrubbed in his presence, managed to slip on both sets of sterile gloves without ripping them, and didn’t contaminate myself all the way to the operating table, I went to introduce myself to the surgeon. I was terrified that he’d refuse to have a student nurse on her first day in theatre scrub for him. He had every right to feel that way too – I had absolutely no idea what I was doing. My preceptor slid in beside me, freshly gowned himself, before I could even speak .
“This is Dannielle, my sidekick, she’s gonna scrub for you,” he said, and even behind the mask I could tell he was grinning.
“Well, goody,” the surgeon said in his polite British accent. “Skin knife and artery forceps to start please sister.”
“Yes, right away,” I’d said, smiling widely even though he couldn’t see that part of my face.
I spun around and turned to my preceptor in a panic. Which one was the skin knife? I had learnt 10 and 15 blade. What in God’s name were artery forceps? He laughed at my expression and called to the surgeon.
“Ya know Matt normal people say 10 blade and a haemostat, give the poor girl a chance, she doesn’t speak British.”
The surgeon laughed and rolled his eyes, and I handed him the instruments, feeling stupid. My preceptor didn’t allow me to feel stupid for long. He let me scrub for countless procedures, taught me how to be a circulating nurse, and annoyed other scrub nurses until they let me observe their surgeries – a kidney transplant, a liver transplant, an aortic valve repair, and a coronary artery bypass graft (CABG). Having a preceptor who teaches with the same passion with which you want to learn undoubtedly shapes one’s career as a nurse, they help make you into the kind of nurse you want to be.
During training, other nurses overwhelmingly influence what sort of nurse you will become when you graduate. More often than not they guide and teach you, showing you how to be a competent nurse, but one can learn just as much from poor experiences, learning about the kind of nurse you don’t want to be, the behaviour you want to improve and learn from. I carry all of these experiences with me as a graduate nurse, because now I am the nurses that taught me, patients are my responsibility, and I have students of my own to teach from time to time. However nurses are not the only ones who influence us in our path to become RNs, there are many reasons we even come to nursing, and so many people who shape those ideas. For my first year as a qualified registered nurse, I would like to pay respect to those individuals and thank them for the nurse that I have become.
The Teacher
I am fifteen years old, in year eleven, hell bent on going to medical school. I sometimes wish I had a curtain to hide myself behind, because the voice in my mind makes it hard to see anything good about me, only problems to be fixed. Control is the only drug I need, and it’s an addictive one, one that leads me to the bathroom lunch time early in September. I have chemistry in fourth period, but my mind is thinking of other things. The ritual is terribly familiar by now. I choose the farthest cubicle, checking to see that there is no one around, and attend to the cutthroat business that is making myself sick. Then I go about the other business – hiding it. I rinse my mouth with mouthwash to kill the smell and get the acid off my teeth. I place a cotton pad soaked in icy water around my eyes to stop the redness and stinging, so I do not draw suspicion by looking like I’ve been crying. I smooth my clothes and follow the command from my mind to act normal. I make it to chemistry class, my facade holding, I make it all the way through class too, even though I feel a panic attack coming on, because a familiar feeling is beginning in my lower abdomen. Pain. When the bell for end of class rings I walk along one of the upper levels of classrooms, away from the rush of people who might notice that my mask is cracking, because my heart is racing, my stomach churning – from anxiety or as a side effect from vomiting it is unclear, but it hardly matters. I see my biology teacher, my heart races faster – I am bad at maintaining this face around him, he sees right through it so often, he is too nice and I feel guilty for lying. But this is a secret that burns everyone who touches it, so I always try. Today something is different though, I don’t know what, perhaps I have managed to wrestle back control from “her”, if only for a moment, because when I smile and wave at him, strolling past quickly, he turns back. When he asks me if I am okay, I say no – against better judgement, against her screaming voice, even though I know it may mean the end of my secret.
I learnt the first thing about being a good nurse before the thought of becoming one even occurred to me. From my high school biology teacher I learnt what it meant to do more than the confines of your job description, because when you care for other people duty calls you someplace higher. To have the privilege to care for, teach, or mentor others as part of your job is to understand that people are more than the task in front of you, they are more than a policy, and more than what you can ever be taught in university. When I told my teacher that I didn’t just spend my lunch times not eating, I spent them throwing up too, I expected him to panic. I figured it wasn’t part of teaching curriculum to know how to deal with teenage bulimics, you just passed them on to people whose job it was to fix them. I expected that maybe he would say that he was sorry, but he had to drag me kicking and screaming to our school’s guidance counsellor – who I was not a fan of. I even expected that maybe he would be sad, and ask me why, why did I do this? How could I like throwing up, perhaps he would ask – like the school’s deputy principal would ask two months later when he found out. He didn’t do any of those things, there was no panic, there was no passing me on, no dragging, For many weeks and months after that day he listened to me, helped me figure out what I wanted to do, and let me realise on my own that I wanted to stop, and was there for me when the time eventually came to tell my parents, he even called my mother when I was too nervous to go home and face her. During this time he never let me forget that I was enough – smart enough, good enough, capable enough, and soon I started to believe it too. He wasn’t obligated to do any of this in his role as my teacher, but he did anyway, because it was what I needed. He realised that what I told him was the hardest thing I have ever told anyone, and respected the kind of honour associated with that. I trusted him enough to tell him my darkest secret, and he never let me down.
My teacher taught me what it meant to be empathetic, and not just do a job, but be genuinely passionate about what you do – enough to go the extra mile without missing a beat. When I admit a patient for surgery, or care for someone on a ward, or attend to an emergency patient, I have a list of requirements that I must fulfil. I must abide by policy, professional frameworks, refer to my knowledge and assessment skills. If by the end of a shift my patient has had their prescribed interventions, I have helped them with activities of daily living, prevented harm, and reported deterioration to doctors – my job is done, legally and professionally. I am busy in a shift, and sometimes there is not time to hold hands or give reassurance – but I do it anyway. My patients are more than a list of tasks to complete, and my job is not just to carry out such a list. I make time to listen to these conversations, because it’s an honour to be chosen to hear them. If a patient trusts me enough to tell me they are scared, I must give them the respect of my attention and my comfort. This comfort isn’t an extra, it is part of being a nurse, and why I became one.
Thank you for teaching me the power of empathy to help and empower another person, because of you I am a good nurse.
The Doctors
Frank
To become a nurse, or any health professional, is to learn a new language – a plethora of jargon and acronyms that become part of your everyday vocabulary. You don’t go to the toilet – pt PUIT. No more do you eat three meals a day, one “tolerates diet and fluid”. To enter an environment where people freely use this language is akin to travelling to a foreign country. This is how a patient feels when they enter a hospital. As well as this new language, one learns a new set of social rules and skills. In real life, we learn our social skills through experience and develop schemas, we observe and put into practice that which we have observed. In nursing world, we have to learn this all over again with interesting new observations. No one ever taught me the appropriate conversation to have with a patient when they’re half naked, or when you’re violating their personal space, or how to ease the awkward silence that exists as you stare at someone’s chest to count their respiration rate. However there is a doctor that stands out who taught me that all of these things can be done, and done well, and his name is Frank.
Frank and I met in my first semester of nursing school and three months after my laparoscopy. I was sent for a scan as a follow up after surgery and to ensure my IUD hadn’t attempted any sort of breakout from my uterus, because perforation of any organ is absolutely no one’s friend. Those endo sisters among you will know said scan as the delightful process where one lies with an ultrasound between one’s legs for twenty or so minutes and tries to focus on something other than the fact that this is the least fun you can have without your skirt on, ever. Frank was uniquely gifted at conversations you can have without pants on. Within five minutes we had covered our shared university alma mater, how he thought nurses were the greatest thing to happen to the world, and several jokes about the absurdity of a former premier’s head. I laughed, I felt comfortable, and yet I still wanted to throw up, and my endometriosis flared up which made things fifty shades of shit. He managed to seamlessly swing from laughter and manner that could only be described as ‘jolly’, to quietly asking me if I was alright and reassuring me that everything would be okay. I am one of those people who cries stupidly when people are nice to me, so naturally I went right on cue. This doctor did not make me feel stupid for feeling this way, he didn’t tell me not to cry or that there was nothing to worry about – because clearly for me there was. He just patiently waited while I let the anxiety out, offering a helpful hand on a shoulder, or sympathetic nod. Then when I was ready he went right back to his jokes.
Sometimes the only way is through. In nursing I cannot dance around the fact that something will be awkward, or that it will hurt, but if I act like I am asking them if they’ve seen any good movies lately, rather than whatever organ system I am focused on at the moment, things go alright. Patients can read you like a book, make no mistake. If you act like what you’re doing is a big deal, or makes you nervous, they will mirror those feelings. Frank taught me the importance of treating the awkward as routine, while still acknowledging the foreign environment the patient finds themselves in. You must be as prepared to make small talk as you are to hold hands, and treat both as a completely normal part of the process. I am still not as adept at these situations as Frank, but I have a standard to aspire to.
Graham
The first time I left Graham’s office, I cried for a long time; it wasn’t because I was sad, not really, despite much talk of surgery and endometriosis. The only thing I was sad for was the knowledge that before this I had accepted less than being taken at my word. I cried with an unusual mix of relief and something unidentifiable, because I had never felt so understood in all my life. I’ve written plenty in the past about how I have been so fortunate to have a great specialist, but it cannot be understated how greatly this treatment has impacted on how I treat my own patients. It’s not only how his kindness, patience, and consideration made me feel better, it’s how it empowered me to trust myself and become my own advocate – because not every medical professional will understand or even try to understand endometriosis, sometimes you have to be the one to push.
No matter how many times I find myself sitting in the same spot in his office, usually three months too late, to tell him that things have not been so good, he acts like it’s the first time I’ve even bothered to ask. There may be some theatrical sighing and a head shake as he tells me that for a nurse I am a terrible patient, but every word I say is taken seriously. If it matters to me, it matters to him. If there is a story that goes with it, he listens. It’s not so hard to figure out what patients want on a basic level, they want to be heard, to feel like what they say matters, that the person they are telling cares. A few times during an appointment he has answered a call from one of his children or another patient, always apologetically. Some people shake their heads when I tell them this, saying that he could have waited for me to leave, but I see it in a different light. The people who call know he is a doctor, and a busy one, so for someone to call and expect to be answered, it must be important. I know from my own experiences that knowing someone needs you and not knowing why can be twice as distracting as just simply answering and figuring out what you can do later, and reassuring that person that they are heard. To me that shows genuine care, and if he treats his family, and his other patients with this respect, then surely I too am in good hands. In nursing it is so often that our care goes unnoticed because it is out of sight – the phone call to a doctor at 2am to demand they come and review a deteriorating patient, the care I take to have a medication checked before administering it – but I am okay with that, because I do not care to be acknowledged, I do it for the patient.
I find myself each day on the ward using some classic “Grahamisms” – a joke he’s made to make me feel better, emulating a reassuring expression, or simply trying to think what he would say if this were me, or one of his patients. All of them have helped me with my own patients. More holistically, his attitude of listening to the patient narrative and allowing it to be one of the major tools for assessment is something that influences my practice. It is the reason I listen with interest as someone tells me the story about their grandchildren, because sometimes it’s important, and give a clue to something we may have missed – depression, decline in mobility, cognitive problems. Patient stories matter, and part of providing true patient centred care is seeing the patient in their world, rather than the artificial and controlled world we create in hospital. Graham taught me that health professionals can make differences in people’s lives, big ones, and though our names might be forgotten, and our faces may fade away in their minds – patients will never forget the care we provided or the safe and reassuring place we created for them.
Thank you for teaching me the real life meaning of patient-centred care, and how empowering it is as a patient to be heard, and understood. Because of you both I am a good nurse.
The Matriarch
My Nanna was 77 years old when she died, which seems far too young in an age where life expectancy for women is over 80. The disease was metastatic breast cancer, the cause liver failure, the complication urosepsis. Nanna always wanted to be a nurse, she once told me, a theatre nurse, just like me, so that she could watch surgery all day. Nanna never turned away from blood and gore, she loved it, even when she claimed she didn’t. I was in my first year of nursing school when she received treatment for a relapse of her primary cancer, and was taking my final exams the week she passed away. The day she found out that she wasn’t going to make it, and that mere days remained, she was braver than I thought possible. She held things together after an initial outpour of emotion, she began charging me with the responsibility of making sure each granddaughter would have something of hers, and what of granddad’s would be left to her grandson. She and I attempted on that first afternoon to cram what should have been another twenty or so years of love and life into a short space of time, knowing that each word came from a stolen moment and borrowed time.
On the third day the ward’s nurse unit manager came and told me that she heard Nanna wanted to see her dog one last time, and told us that if we could sneak her in, she would let us. Nanna was already on a NIKI pump, filled with medications to ease pain and keep her sedated enough not to feel any distress, but when Chloe came to sit on her bed, I swear I saw her smile one last time. The nurses sat at the door, trying to catch a glimpse of this sweet moment and smiling. This was a simple gesture, but it no doubt meant everything to Nanna to see Chloe one last time. She saw her three sons, two of her granddaughters, her best friend and her dog – she could go now. She didn’t wake up again after that day and died two days later. The nurses in oncology talked to her as though she were still answering, they did turns and care as though preventing pressure areas at this point really mattered, because my Nanna, no matter how close to the end, was still a person who deserved comfort and care. Those nurses were exactly what I wanted to be, but it was Nanna who taught me what it was like to be the one dying. She taught me that there is no textbook way that things go when you hear that the end is coming, and that it is possible to be brave even when inside you are not. Nanna lived a life for others, and that was how her life ended too – she was strong for us, even when it was us who wanted to be strong for her. At her funeral my father described her with a line from Bruce Springsteen – courage you can’t understand. That has been true for so many patients I have cared for. I look at them and wonder how they don’t just cry all the time, how they manage to make jokes and compliment my hair or my colleague’s tie. They find something, some place inside them, and keep going despite their circumstances. My patients have been the best teachers of all. They help me understand what it is like to be vulnerable or scared, or confused, and that these emotions matter. They are more than their disease. I have been the patient myself, and for so long I didn’t think much of myself, and for that reason I accepted it when people dismissed my pain or didn’t take me seriously. Once I found a doctor who helped me realise that I matter, I knew I never wanted any patient to feel the same way. My patients are the reason for my job, and they teach me something new every day. I see Nanna in them each day, and for her, and them, I do my very best.
Thank you for teaching me what it is to be a patient, how we as humans can handle even death with grace and dignity, and that loss changes families forever; and how I help families deal with that can also change them forever. Because of you, I am a good nurse.
On my final day of theatre placement I scrubbed for the same surgeon as on the first day. Before he even turned to ask me I handed him a yellow sharps tray and held in my other hand a haemostat.
“Skin knife and artery forceps,” I said.
“Thank you sister,” he replied.
“You know I’m not a nurse right? You don’t have to call me sister, I’m a student,” I told him.
“I think I’ll call you sister,” he said. “You’ve earned it.”
My preceptor stood to the side, supervising but letting me do the case alone; I could see his eyes smiling behind his mask.
“Thank you,” I whispered.
To every preceptor, every patient, every doctor, and friend…to every family member, every other student nurse who made it through with me: thank you for making me more than just a good nurse, but a great nurse, a nurse in progress who humbly presents herself each shift to patients and other colleagues to ask – what can I learn today?
To every nurse and midwife reading, Happy International Nurses Day sisters!
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