The next appointment after the Centrelink Interview was EEG on Thursday the 6 th.
I couldn’t relax after the interview as there was possibility that the peak of payback would fall on the day of the EEG. My payback is slow to kick in and sometimes its progress is very slow as well.
As you know, my wonderful doctor had organised ambulance transport to the hospital for me. When I was checking the copy of the form, I started getting anxious again. I was not sure if the form also covers the transport back from hospital to home. If not, I need to take a long distance taxi ride and was worried how much it would cost me, how difficult for me to catch one, if they would accept credit card for the ride as I don’t carry cash (because I cannot go to bank or ATM), and etc.
It really sounds ridiculous, but I need to know exactly what would happen so that I can plan how to conserve energy to survive the outing. Nothing is simple and easy anymore…
The day before the EEG, I took a decent shower and washed hair so that I could get away with quick one in the morning if my condition is really bad on the day.
I was told that the ambulance would pick me up around 10 am in order to be at the appointment at 11:30 am. So I planned to get up from bed around 8 am in order to get ready. I was not well and was still struggling in bed at 8:20.
Then I heard knock on the door. When I managed to get there, there was a well dressed ambulance officer to pick me up. I got confused and panicked. I finally managed to explain that I was expecting him at 10 and my appointment was 11:30. Then he told me, “No, no. You have an appointment at 10, so you need to leave now!”
I assured him that the appointment was 11:30. But I was not ready to go yet. Even I can get away with quick shower, it would still take at least an hour for me to get ready. I am very slow even I try to be as fast as I could.
“What can I do?” I asked the officer with misery and desperation. He seemed he is used to slow people. He wasn’t upset that I wasn’t ready. He understood it wasn’t really my fault. He contacted the office and told me someone else would come and pick me up, so I better start getting ready now.
Before he went, I asked if someone would take me back home as well. He kindly explained how the system works. They take me to Transit Centre in hospital, and hospital staff will wheel me to the department I need to go. After the test, I will be wheeled back to the Transit Centre. And the staff will contact ambulance office to take me home. This information made me feel much easier. I thanked him and apologised for wasting his time.
According to the officer, next ambulance would come anytime around after 9:30. But he also advised not to worry if they come later.
With extra efforts, I made myself ready around 9:40 and relieved that they were not here yet. At 10 o’clock, no sign of ambulance, but I remembered the officer’s word “not to worry if they were late”. 10:30… And around 10:45, I was anxious because I really should be on my way in order to be there for my appointment.
I started to panic, but I didn’t know what to do. There was no phone number on the form. I checked on Yellow Pages and White Pages. I phoned St John’s Ambulance, but they told me I should contact Queensland Health. I asked if they knew the telephone number and they kindly gave it to me.
I spoke with the blunt operator and she told me that they were on their way to my place. I phoned the hospital and left a message on voice mail that I was coming.
11 o’clock… 11:15… I was completely panicked and almost crying not knowing what to do. I started telling myself that this was not the end of the world, even if the hospital decided not to do the test today, it could always be rearranged, it just a matter of inconvenience and I just have to wait for another appointment and go through the effort of getting ready again… This is not the end of the world! Everything can be rearranged.
Around 11:20, I phoned the ambulance office again. This time, there was a long wait. When I got to the same blunt operator, I miserably explained that I need to be at the hospital now for my test. She explained without emotion that there were some delay and she would contact hospital that I was coming late. I hoped her phone call would help.
Around 11:50, the hospital phoned me. It was a friendly person. She told me she got my message and asked if the ambulance came to pick me up yet. I said no with misery and prepared my mind. I expected her to tell me to reschedule the appointment. But she chuckled and said it was difficult when I needed to rely on transport. She, then, told me not to get too stressed out and she would fix me up as long as I got there before 4 o’clock. Tear of relief came out and I thanked her.
Around 12:15, finally the ambulance came. I was bit hesitated as it was ordinary ambulance, not a van as my doctor explained.
Young officers apologised for the delay and explained that the vehicle had broken down. They were also relieved to hear that the hospital was flexible to give me the test even I was extremely late for the appointment.
They asked if I wanted to sit on the seat or on the stretcher. I explained I cannot sit up for long. Then they told me I better be on stretcher. They organised the stretcher and cover my legs with fresh sheet and buckled me up, then hoisted me into the ambulance.
The ride was comfortable. I enjoyed blue sky and view from the side window. They stopped at Logan Hospital to pick up another patient. Then they delivered him to another hospital. Soon after, we arrived at my hospital.
They wheeled me into the Transit Centre and let me settle into a big comfortable chair. There are several beds if I needed to lie down, but I didn’t think I would be waiting for too long as I was already 2 hours late for the appointment.
One of the officers quickly chatted with me before they went. According to him, I was the first Japanese he helped although he helped many Chinese and Koreans. He was curious because he couldn’t tell my origin. They were really friendly officers and made me feel I was a normal person.
The Transit Centre had the similar atmosphere as an air port lounge. In the middle of the room, there was a staff station. Friendly staff took my information and advised the Neurology Department of my arrival.
Occasionally, another stretcher wheeled in, and another came to pick up patient. And there were friendly greetings or quick chat between staff and patients.
I was starting to feel I was facing Harry Potter’s invisible magical world. It is the world that exists, but not all muggle can see.
The outside of the hospital was busy, noisy, dusty and chaotic. There was construction of parking building. There were tall parking buildings at far across the street. There was no chance for me to walk the distance. I tried to spot disabled parking area, but I didn’t see any. Any available parking spaces were already filled with cars, building materials and something. There were more vehicles constantly moving along the small space. People were walking on the slope towards the hospital entrance.
I was grateful again for my GP to organise the transport. Now I was sure that I could not make it safely to the appointment if I had to drive by myself. And lucky me, I was surrounded by friendly staff and sitting on the comfortable big chair with option of lying on comfortable bed, and did not need to worry about anything.
The next appointment after the Centrelink Interview was EEG on Thursday the 6 th.
I couldn’t relax after the interview as there was possibility that the peak of payback would fall on the day of the EEG. My payback is slow to kick in and sometimes its progress is very slow as well.
As you know, my wonderful doctor had organised ambulance transport to the hospital for me. When I was checking the copy of the form, I started getting anxious again. I was not sure if the form also covers the transport back from hospital to home. If not, I need to take a long distance taxi ride and was worried how much it would cost me, how difficult for me to catch one, if they would accept credit card for the ride as I don’t carry cash (because I cannot go to bank or ATM), and etc.
It really sounds ridiculous, but I need to know exactly what would happen so that I can plan how to conserve energy to survive the outing. Nothing is simple and easy anymore…
The day before the EEG, I took a decent shower and washed hair so that I could get away with quick one in the morning if my condition is really bad on the day.
I was told that the ambulance would pick me up around 10 am in order to be at the appointment at 11:30 am. So I planned to get up from bed around 8 am in order to get ready. I was not well and was still struggling in bed at 8:20.
Then I heard knock on the door. When I managed to get there, there was a well dressed ambulance officer to pick me up. I got confused and panicked. I finally managed to explain that I was expecting him at 10 and my appointment was 11:30. Then he told me, “No, no. You have an appointment at 10, so you need to leave now!”
I assured him that the appointment was 11:30. But I was not ready to go yet. Even I can get away with quick shower, it would still take at least an hour for me to get ready. I am very slow even I try to be as fast as I could.
“What can I do?” I asked the officer with misery and desperation. He seemed he is used to slow people. He wasn’t upset that I wasn’t ready. He understood it wasn’t really my fault. He contacted the office and told me someone else would come and pick me up, so I better start getting ready now.
Before he went, I asked if someone would take me back home as well. He kindly explained how the system works. They take me to Transit Centre in hospital, and hospital staff will wheel me to the department I need to go. After the test, I will be wheeled back to the Transit Centre. And the staff will contact ambulance office to take me home. This information made me feel much easier. I thanked him and apologised for wasting his time.
According to the officer, next ambulance would come anytime around after 9:30. But he also advised not to worry if they come later.
With extra efforts, I made myself ready around 9:40 and relieved that they were not here yet. At 10 o’clock, no sign of ambulance, but I remembered the officer’s word “not to worry if they were late”. 10:30… And around 10:45, I was anxious because I really should be on my way in order to be there for my appointment.
I started to panic, but I didn’t know what to do. There was no phone number on the form. I checked on Yellow Pages and White Pages. I phoned St John’s Ambulance, but they told me I should contact Queensland Health. I asked if they knew the telephone number and they kindly gave it to me.
I spoke with the blunt operator and she told me that they were on their way to my place. I phoned the hospital and left a message on voice mail that I was coming.
11 o’clock… 11:15… I was completely panicked and almost crying not knowing what to do. I started telling myself that this was not the end of the world, even if the hospital decided not to do the test today, it could always be rearranged, it just a matter of inconvenience and I just have to wait for another appointment and go through the effort of getting ready again… This is not the end of the world! Everything can be rearranged.
Around 11:20, I phoned the ambulance office again. This time, there was a long wait. When I got to the same blunt operator, I miserably explained that I need to be at the hospital now for my test. She explained without emotion that there were some delay and she would contact hospital that I was coming late. I hoped her phone call would help.
Around 11:50, the hospital phoned me. It was a friendly person. She told me she got my message and asked if the ambulance came to pick me up yet. I said no with misery and prepared my mind. I expected her to tell me to reschedule the appointment. But she chuckled and said it was difficult when I needed to rely on transport. She, then, told me not to get too stressed out and she would fix me up as long as I got there before 4 o’clock. Tear of relief came out and I thanked her.
Around 12:15, finally the ambulance came. I was bit hesitated as it was ordinary ambulance, not a van as my doctor explained.
Young officers apologised for the delay and explained that the vehicle had broken down. They were also relieved to hear that the hospital was flexible to give me the test even I was extremely late for the appointment.
They asked if I wanted to sit on the seat or on the stretcher. I explained I cannot sit up for long. Then they told me I better be on stretcher. They organised the stretcher and cover my legs with fresh sheet and buckled me up, then hoisted me into the ambulance.
The ride was comfortable. I enjoyed blue sky and view from the side window. They stopped at Logan Hospital to pick up another patient. Then they delivered him to another hospital. Soon after, we arrived at my hospital.
They wheeled me into the Transit Centre and let me settle into a big comfortable chair. There are several beds if I needed to lie down, but I didn’t think I would be waiting for too long as I was already 2 hours late for the appointment.
One of the officers quickly chatted with me before they went. According to him, I was the first Japanese he helped although he helped many Chinese and Koreans. He was curious because he couldn’t tell my origin. They were really friendly officers and made me feel I was a normal person.
The Transit Centre had the similar atmosphere as an air port lounge. In the middle of the room, there was a staff station. Friendly staff took my information and advised the Neurology Department of my arrival.
Occasionally, another stretcher wheeled in, and another came to pick up patient. And there were friendly greetings or quick chat between staff and patients.
I was starting to feel I was facing Harry Potter’s invisible magical world. It is the world that exists, but not all muggle can see.
The outside of the hospital was busy, noisy, dusty and chaotic. There was construction of parking building. There were tall parking buildings at far across the street. There was no chance for me to walk the distance. I tried to spot disabled parking area, but I didn’t see any. Any available parking spaces were already filled with cars, building materials and something. There were more vehicles constantly moving along the small space. People were walking on the slope towards the hospital entrance.
I was grateful again for my GP to organise the transport. Now I was sure that I could not make it safely to the appointment if I had to drive by myself. And lucky me, I was surrounded by friendly staff and sitting on the comfortable big chair with option of lying on comfortable bed, and did not need to worry about anything.
Filed under: Disability, ME/CFS