Blog
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How to convince them to 'get it together?'
Friday 6 September 2024
Life has a way of throwing us curveballs when we least expect them and this week has thrown me a massive one.
It is more like a beachball than a small curveball.
I was scheduled to be admitted on Tuesday September 3rd, and was supposed to undergo surgery the following day.
As I prepared for this pivotal moment, I found myself reflecting deeply on what it took to simply show up.
The anxiety in the leadup to admission was all-consuming, manifesting in many ways. I spent restless nights grappling with my racing thoughts, finding myself seated on the bedroom floor at two in the morning on the day of admission, trying to breathe through the whirlwind in my mind. The feeling of my head spinning made it difficult to hold on to any semblance of calm.
As the time to leave the house approached, my stomach churned, and anxious vomiting became a bizarre reminder of the weight my emotions carried.
But… I Showed Up!
Despite all this turmoil, I showed up. I walked through those hospital doors with a mixture of fear, trepidation, and an underlying sense of resilience that I didn't know I had. Showing up wasn't just a physical act; it was an emotional triumph. It symbolized my determination to confront my fears head-on, to push through the panic, and to embrace what lay ahead.
The journey was fraught with challenges, but to finally stand there, acknowledging the fear yet moving forward regardless, is an incredible feat, although so difficult.
Navigating the healthcare system can be a daunting experience, especially for individuals with disabilities. On a day that was filled with certainty and anxiety, I was fortunate to have my best friend. Her calm kept me movable, she kept me from totally freaking out. We went for coffee and lunch. We took our time and she drove me to the hospital. Once dropped off at the hospital, I met an extraordinary advocate whose kindness and support made all the difference. At exactly 1:50 PM, not long after I arrived at the hospital, I was welcomed by a member of the Western Health Disability Advocacy team—an organization I had not known about for long but soon realised was a vital resource. I had contact them via email only the week before when I decided that I needed help to be able to take this major step, both with surgery and with the next stage of my formal complaint about the hospital that caused my PTSD earlier this year.
The moment I saw the advocate walking towards me at the main entrance to the hospital on Tuesday, I felt an immediate weight lift off my shoulders. Her warm demeanor put me at ease, and I quickly recognized that I was in compassionate hands.
Until that day, I had never required the services of a disability advocate, but in that moment, I realised how essential such support can be in navigating the complexities of healthcare.
With gentle patience, she guided me through the admissions process. As we sat in the admissions office, she attentively listened to me, asking the questions of myself and of the medical staff that I, overwhelmed with anxiety, could neither articulate nor remember. It was clear that her role went beyond mere assistance; she was a source of emotional support, genuinely invested in my well-being.
Once my admission was complete, she accompanied me to the ‘transit lounge’—a temporary waiting area between admissions and the ward. Throughout our time there, we engaged in conversation about various topics, including the meeting I need to attend concerning the formal complaint I had filed (see above). Her ability to seamlessly switch topics and keep me engaged was comforting, allowing my mind to shift focus from my impending surgery to more grounding discussions.
As I sat in the lounge waiting for doctors, blood tests, and a bed, I fought the urge to flee. The thought of running was tempting, but her reassuring presence kept me grounded. “I’ll call you a taxi if that is what you need,” she said, which, surprisingly, calmed my nervous energy. It was sweet, compassionate gestures like this that showcased her genuine care and commitment to helping me through this challenging time.
After we shared over an hour together, the advocate had to leave me to attend to her other responsibilities, but not without first ensuring I felt somewhat secure in my situation. As she departed, I was left with a heart full of gratitude and a sense of reassurance.
This experience has highlighted how essential advocates like her are in the healthcare system, especially for those living with disabilities. Their role is invaluable—not just in terms of assistance, but also in the emotional support they provide.
Navigating healthcare can often feel like traversing a labyrinth with no clear path. High-stakes scenarios, such as scheduling a surgical procedure, can amplify the anxiety felt by patients, especially when critical information about medication is not communicated effectively or at all. My recent ordeal serves as a glaring example of how lapses in communication can impact patient care and outcomes. I am good at advocating for other people, but when it comes to doing the same for myself? I find it very difficult, so am so grateful for the WH advocates.
Not long after an advocate left my hospital room, a doctor entered, ready to assess my situation. He asked a series of questions about my medical history and current medications, then left with a promise to return. Soon after, he reappeared and proceeded to ask me the same questions again. This repetition was bewildering, but I chalked it up to the busy nature of the healthcare environment. Perhaps he wanted to ensure he had all the details straight.
My (kind of) calm was short-lived.
A few moments later, I was informed that the surgery, scheduled for the following day, could not proceed. The reason? I had taken my blood thinners. My immediate reaction was a mix of confusion and frustration. Throughout the entire process of preparing for the surgery, I had consistently asked for clarity regarding my medications, specifically the blood thinners I was prescribed.
I had spoken with multiple healthcare professionals, over many weeks, including doctors from the hospital and my cardiologist. I diligently voiced my concerns about what medications I could and could not take in the days preceding the surgery. I was given a medication to take regularly beginning the week before surgery. However, I knew that blood thinners would have instructions. Each time I asked what the final instructions for these tablets were, the only response I received regarding blood thinners was, “I have already given them my instructions” or “I have been informed that someone will call you” creating a sense of uncertainty that hung over me. In the absence of a definitive answer, I continued my routine as normal, without knowing that such a simple act of taking my medication would have massive implications for my surgery.
No-one had followed up with me, and my frustration deepened. The lack of communication felt not only like a personal oversight but as a systemic failure that put me in a precarious situation. Why had no one thought to directly provide clear instructions regarding my medication? Why was there no system in place to ensure that urgent information reached the patient? My repeated inquiries seemed to have fallen on deaf ears and on Tuesday, I quickly became very distressed.
This experience underscores a critical issue in healthcare—the need for effective communication. Medical professionals are often overwhelmed, attending to myriad patients and tasks that can lead to oversights. Yet, in an era where technology exists to streamline communication, it is disheartening that fundamental information about patient care can be neglected.
In the realm of medical procedures, the anticipation and preparation leading up to surgery can often be emotionally draining. For many patients, the prospect of undergoing an operation can evoke a mix of anxiety, hope, and dread. However, when unforeseen complications arise, these feelings can intensify significantly, as I recently experienced firsthand.
I had mentally and emotionally tried to prepare myself for a surgery that is a critical turning point in my life. The date was set, and I was ready to confront my fears with determination. But the day before my scheduled procedure, I received news that shattered my resolve. My doctor, after consulting with his team, returned with a message that lingered in the air like a heavy fog: due to medication I had been taking, the surgery could not proceed as planned. Not only was it postponed for the next few days, but I was ultimately told to return on Monday morning for an expected operation that wouldn’t happen until the afternoon.
At that point, I felt a wave of despair wash over me. The very thought of waiting for nearly a week after having finally worked up the courage to face this moment was devastating. It felt as if I was being tossed back into a whirlwind of anxiety and uncertainty, stripped of the control I believed I had regained. I recall how desperately I’d hoped that everything would go smoothly, that I would simply get through it, and yet here I was, facing yet another hurdle.
The reality of the situation was that my surgery had been unknowingly jeopardized by NOT being informed about the necessity of halting my medication at least 72 hours prior to the procedure. In moments like these, it's easy to turn the blame inward. It felt like another brick added to the wall of frustration building in my mind: “maybe they did tell me,” “Why didn’t they tell me?” and “get your shit together people!” I bounced between self-blame and a yearning to redirect my anger towards the healthcare system for its shortcomings in communication.
PS- they did NOT tell me.
The emotional turbulence became overwhelming, and as soon as the doctor left the room, I burst into tears, sharing my distress over the phone with a friend. Thankfully, her comforting reminders and calm demeanor helped ground me when my own thoughts spiraled into chaos. It’s astonishing how someone else’s steady presence can serve as a much-needed anchor during overwhelming times.
The hospital staff began preparing additional medication – Lugol’s iodine solution, a pre-operative requirement. However, the prolonged wait in that cramped room gnawed at my anxiety. Hours stretched interminably as I sat, consumed by worry and the remnants of tears. Why was it taking so long to merely leave? It felt agonizing, and the ticking clock only seemed to amplify my distress.
Eventually, hours lates and after what felt like an eternity, I was cleared to leave. The night air hit me, cooling me down as I stepped outside the hospital, moments that seemed both familiar and foreign swirled around me. I called a cab to return home, clutching my phone as I waited in the dark, where loneliness mingled with a flood of emotions, ranging from relief to lingering anxiety about what awaited me on Monday.
This experience underscored an essential truth about medical care: it is equally about the emotional journey patients undergo as they navigate their health challenges. Communications must be clear and proactive, and the pressures of hospital environments can be overwhelming for those already on the brink. Ensuring patients are well-informed can make all the difference in their mental preparedness and overall experience.
Now, I have withheld the medication that they failed to give me instructions about, and I am once again, trying to keep busy so that my anxiety does not overtake me again. It is difficult and it is very unfair. PTSD around anything medical, makes any admission or even just a simple GP visit overwhelming and having had to force myself to show up already this week and to stay 6 hours or so as I did, with the urge to run sky high, has worn me out.
I am exhausted and I still have to do it all again on Monday. This is before the big surgery and recovery!
To be honest, maybe being put under will allow me a rest...
Crossing fingers they do it this time!
x x Tab
Friday 6 September 2024
Life has a way of throwing us curveballs when we least expect them and this week has thrown me a massive one.
It is more like a beachball than a small curveball.
I was scheduled to be admitted on Tuesday September 3rd, and was supposed to undergo surgery the following day.
As I prepared for this pivotal moment, I found myself reflecting deeply on what it took to simply show up.
The anxiety in the leadup to admission was all-consuming, manifesting in many ways. I spent restless nights grappling with my racing thoughts, finding myself seated on the bedroom floor at two in the morning on the day of admission, trying to breathe through the whirlwind in my mind. The feeling of my head spinning made it difficult to hold on to any semblance of calm.
As the time to leave the house approached, my stomach churned, and anxious vomiting became a bizarre reminder of the weight my emotions carried.
But… I Showed Up!
Despite all this turmoil, I showed up. I walked through those hospital doors with a mixture of fear, trepidation, and an underlying sense of resilience that I didn't know I had. Showing up wasn't just a physical act; it was an emotional triumph. It symbolized my determination to confront my fears head-on, to push through the panic, and to embrace what lay ahead.
The journey was fraught with challenges, but to finally stand there, acknowledging the fear yet moving forward regardless, is an incredible feat, although so difficult.
Navigating the healthcare system can be a daunting experience, especially for individuals with disabilities. On a day that was filled with certainty and anxiety, I was fortunate to have my best friend. Her calm kept me movable, she kept me from totally freaking out. We went for coffee and lunch. We took our time and she drove me to the hospital. Once dropped off at the hospital, I met an extraordinary advocate whose kindness and support made all the difference. At exactly 1:50 PM, not long after I arrived at the hospital, I was welcomed by a member of the Western Health Disability Advocacy team—an organization I had not known about for long but soon realised was a vital resource. I had contact them via email only the week before when I decided that I needed help to be able to take this major step, both with surgery and with the next stage of my formal complaint about the hospital that caused my PTSD earlier this year.
The moment I saw the advocate walking towards me at the main entrance to the hospital on Tuesday, I felt an immediate weight lift off my shoulders. Her warm demeanor put me at ease, and I quickly recognized that I was in compassionate hands.
Until that day, I had never required the services of a disability advocate, but in that moment, I realised how essential such support can be in navigating the complexities of healthcare.
With gentle patience, she guided me through the admissions process. As we sat in the admissions office, she attentively listened to me, asking the questions of myself and of the medical staff that I, overwhelmed with anxiety, could neither articulate nor remember. It was clear that her role went beyond mere assistance; she was a source of emotional support, genuinely invested in my well-being.
Once my admission was complete, she accompanied me to the ‘transit lounge’—a temporary waiting area between admissions and the ward. Throughout our time there, we engaged in conversation about various topics, including the meeting I need to attend concerning the formal complaint I had filed (see above). Her ability to seamlessly switch topics and keep me engaged was comforting, allowing my mind to shift focus from my impending surgery to more grounding discussions.
As I sat in the lounge waiting for doctors, blood tests, and a bed, I fought the urge to flee. The thought of running was tempting, but her reassuring presence kept me grounded. “I’ll call you a taxi if that is what you need,” she said, which, surprisingly, calmed my nervous energy. It was sweet, compassionate gestures like this that showcased her genuine care and commitment to helping me through this challenging time.
After we shared over an hour together, the advocate had to leave me to attend to her other responsibilities, but not without first ensuring I felt somewhat secure in my situation. As she departed, I was left with a heart full of gratitude and a sense of reassurance.
This experience has highlighted how essential advocates like her are in the healthcare system, especially for those living with disabilities. Their role is invaluable—not just in terms of assistance, but also in the emotional support they provide.
Navigating healthcare can often feel like traversing a labyrinth with no clear path. High-stakes scenarios, such as scheduling a surgical procedure, can amplify the anxiety felt by patients, especially when critical information about medication is not communicated effectively or at all. My recent ordeal serves as a glaring example of how lapses in communication can impact patient care and outcomes. I am good at advocating for other people, but when it comes to doing the same for myself? I find it very difficult, so am so grateful for the WH advocates.
Not long after an advocate left my hospital room, a doctor entered, ready to assess my situation. He asked a series of questions about my medical history and current medications, then left with a promise to return. Soon after, he reappeared and proceeded to ask me the same questions again. This repetition was bewildering, but I chalked it up to the busy nature of the healthcare environment. Perhaps he wanted to ensure he had all the details straight.
My (kind of) calm was short-lived.
A few moments later, I was informed that the surgery, scheduled for the following day, could not proceed. The reason? I had taken my blood thinners. My immediate reaction was a mix of confusion and frustration. Throughout the entire process of preparing for the surgery, I had consistently asked for clarity regarding my medications, specifically the blood thinners I was prescribed.
I had spoken with multiple healthcare professionals, over many weeks, including doctors from the hospital and my cardiologist. I diligently voiced my concerns about what medications I could and could not take in the days preceding the surgery. I was given a medication to take regularly beginning the week before surgery. However, I knew that blood thinners would have instructions. Each time I asked what the final instructions for these tablets were, the only response I received regarding blood thinners was, “I have already given them my instructions” or “I have been informed that someone will call you” creating a sense of uncertainty that hung over me. In the absence of a definitive answer, I continued my routine as normal, without knowing that such a simple act of taking my medication would have massive implications for my surgery.
No-one had followed up with me, and my frustration deepened. The lack of communication felt not only like a personal oversight but as a systemic failure that put me in a precarious situation. Why had no one thought to directly provide clear instructions regarding my medication? Why was there no system in place to ensure that urgent information reached the patient? My repeated inquiries seemed to have fallen on deaf ears and on Tuesday, I quickly became very distressed.
This experience underscores a critical issue in healthcare—the need for effective communication. Medical professionals are often overwhelmed, attending to myriad patients and tasks that can lead to oversights. Yet, in an era where technology exists to streamline communication, it is disheartening that fundamental information about patient care can be neglected.
In the realm of medical procedures, the anticipation and preparation leading up to surgery can often be emotionally draining. For many patients, the prospect of undergoing an operation can evoke a mix of anxiety, hope, and dread. However, when unforeseen complications arise, these feelings can intensify significantly, as I recently experienced firsthand.
I had mentally and emotionally tried to prepare myself for a surgery that is a critical turning point in my life. The date was set, and I was ready to confront my fears with determination. But the day before my scheduled procedure, I received news that shattered my resolve. My doctor, after consulting with his team, returned with a message that lingered in the air like a heavy fog: due to medication I had been taking, the surgery could not proceed as planned. Not only was it postponed for the next few days, but I was ultimately told to return on Monday morning for an expected operation that wouldn’t happen until the afternoon.
At that point, I felt a wave of despair wash over me. The very thought of waiting for nearly a week after having finally worked up the courage to face this moment was devastating. It felt as if I was being tossed back into a whirlwind of anxiety and uncertainty, stripped of the control I believed I had regained. I recall how desperately I’d hoped that everything would go smoothly, that I would simply get through it, and yet here I was, facing yet another hurdle.
The reality of the situation was that my surgery had been unknowingly jeopardized by NOT being informed about the necessity of halting my medication at least 72 hours prior to the procedure. In moments like these, it's easy to turn the blame inward. It felt like another brick added to the wall of frustration building in my mind: “maybe they did tell me,” “Why didn’t they tell me?” and “get your shit together people!” I bounced between self-blame and a yearning to redirect my anger towards the healthcare system for its shortcomings in communication.
PS- they did NOT tell me.
The emotional turbulence became overwhelming, and as soon as the doctor left the room, I burst into tears, sharing my distress over the phone with a friend. Thankfully, her comforting reminders and calm demeanor helped ground me when my own thoughts spiraled into chaos. It’s astonishing how someone else’s steady presence can serve as a much-needed anchor during overwhelming times.
The hospital staff began preparing additional medication – Lugol’s iodine solution, a pre-operative requirement. However, the prolonged wait in that cramped room gnawed at my anxiety. Hours stretched interminably as I sat, consumed by worry and the remnants of tears. Why was it taking so long to merely leave? It felt agonizing, and the ticking clock only seemed to amplify my distress.
Eventually, hours lates and after what felt like an eternity, I was cleared to leave. The night air hit me, cooling me down as I stepped outside the hospital, moments that seemed both familiar and foreign swirled around me. I called a cab to return home, clutching my phone as I waited in the dark, where loneliness mingled with a flood of emotions, ranging from relief to lingering anxiety about what awaited me on Monday.
This experience underscored an essential truth about medical care: it is equally about the emotional journey patients undergo as they navigate their health challenges. Communications must be clear and proactive, and the pressures of hospital environments can be overwhelming for those already on the brink. Ensuring patients are well-informed can make all the difference in their mental preparedness and overall experience.
Now, I have withheld the medication that they failed to give me instructions about, and I am once again, trying to keep busy so that my anxiety does not overtake me again. It is difficult and it is very unfair. PTSD around anything medical, makes any admission or even just a simple GP visit overwhelming and having had to force myself to show up already this week and to stay 6 hours or so as I did, with the urge to run sky high, has worn me out.
I am exhausted and I still have to do it all again on Monday. This is before the big surgery and recovery!
To be honest, maybe being put under will allow me a rest...
Crossing fingers they do it this time!
x x Tab
Lost it once, about to lose it again face.
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It felt like I was the only one there
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copied or used without the express and written permission of Tabitha J Page.
Sharing pages straight from the website is welcomed however/please give credit if sharing and use the direct browser link.
