A hospital staff with walky-talky pushed me in wheelchair. While we were waiting for an elevator, she chatted with people she knew. Just looking and hearing their conversation was amusement to me. Sitting in a comfortable wheelchair, I continued to feel I was in Harry Potter’s magical world.
Since I need to my head down when I walk in order to conserve energy and strength and to avoid collapsing from exertion, I can no longer observe scenery while I am out.
In the wheelchair, just look at walls, doors, ceiling and people passing by without worrying about collapsing was the realisation of how much abilities I have lost to ME/CFS. While we were moving on terrace like hallway, I noticed a huge food court area on the ground floor. There was a big sign of Starbucks. I wished I could go there and have a nice cappuccino. I don’t remember when I had a good coffee at café last time. But today, I just have to be satisfied with looking at the coffee shop and lots of people getting their favourite coffee at the counter.
It is a huge hospital. Even though she was pushing me from Transit Centre, not from the front entrance, the ride seemed to be forever and I was grateful again for my GP to organise the transport service. Now I was very sure that I wouldn’t have survived the day without the service.
Finally, we arrived at a quiet Neurology Department. The hospital staff talked to the receptionist and left for her next patient.
After a short wait, I was greeted by a lady. She had a cool salon hair cut, but somehow kept her warm personality. And it was creating unique and welcoming atmosphere. She introduced me that she is a technician not a doctor. She calmly chat with me and asked what my problems were. She asked about my life. But I didn’t have much happy or positive story to tell her, so I asked if I could ask about her life. She didn’t mind and told me about her work, what she likes to do if she gets some spare time and etc.
She started putting gel on my head and connecting wires. She explained that it was the most time consuming part and the actual test would be only about 10 minutes and I would not feel any pain at all.
We kept talking about epilepsy and ME. Funny thing was she told me that many doctors don’t understand epilepsy and they just tell it doesn’t exist just like ME/CFS. Since my GP requested the EEG even I didn’t have hallmark epileptic seizure, I was once again impressed by his deep knowledge about medical conditions. It is not really my place to feel this way, but I couldn’t stop feeling proud of my GP.
Before the test, I imagined that the EEG would be conducted in a dark room and they might put on flushing light in my face or play annoying noise. But it wasn’t like that at all.
Room had ordinary office light throughout. There was no annoying noise, but must have some unrecognisable noise (could be some machine humming…) as I had little difficulty listening to her voice as if I was in a noisy pub trying to listen to friends.
I also thought the wires were just to monitor brain activities, but they may be sending some signals as I experienced different body movements and sensations during the test. I was asked to close and open eyes during the test. It seemed Nystagmas (uncontrolled eye movement) was out of control and she put a cloth over my eyes and asked me to press it to stop my eyes from moving around. (After the Centrelink Interview, I felt it got worse again, but usually I don’t notice it unless I try to read or focus.) I didn’t know what she was doing, but I was feeling tensions in my head. And jaw jerking and Myocolonus (involuntary muscle jerking) started. One stage, I was getting overwhelming tension in frontal and temporal lobe area and she asked if I was okay with concern in her face.
Then she asked me to breathe deeply. As she had explained that deep breathing would not be needed, I suspect something was showing as abnormal. Because of asthma, taking deep breath was not easy. Dr TL explained before that asthmatic has more difficulty breathing out than breathing in. And it was exactly like that. I tried to breath in more air but my lungs were already full and I was just puffing air like a fish out of water…
When the test was ended, she pulled all wires off from my head and wipe off thick gel from my head. They didn’t come off completely and it felt like I had hair gel.
It was a very easy test. All I had to do was to open and close my eyes whenever she asked, and then take deep breath. But I was feeling very exhausted and my body was moving around as if I had a mild Parkinson’s disease while I was waiting for someone to take me back to the Transit Centre.
EEG is the test when epilepsy, Parkinson’s disease or dementia is suspected. From the symptoms I was having, I wouldn’t be surprised if I was diagnosed with frontal lobe epilepsy or mild Parkinson’s disease. But as a typical of ME/CFS, there may be no abnormality at all despite of all the symptoms.
I was back at the waiting area, and I had to lay my upper body over two chairs. Myocolonus was in its full swing as well, and I remembered reading the test might trigger epilepsy episode. The kind technician came out check on me as she knew I cannot sit up for long time. She double checked with the receptionist who was ready to go home that the Transit Centre was requested of picking me up. Then, she took me to a quiet room to lie down on a comfortable day bed. As she left the room, she turned the room light to dim and I just amazed and appreciated for her compassion.
Finally the transport staff picked me up. He took a different route back. According to him, he was taking a short cut. We cut through wards, and I exchanged lots of smile with staff and hospital patients while going through the wards. We also chat on the way and I enjoyed the wheelchair ride back to the Transit Centre. It is just amazing to realise that people around me become friendly and nice when I am being cared by someone else.
I was settled into a comfortable chair next to a beautiful and friendly 89 years old lady. We enjoyed chatting and I was amazed that she can do much more than I can and her quality of life is much better than mine. And I was very happy to hear that she is enjoying her life. When her ambulance came to bring her back to her excellent nursing home, she wished me to look after myself as much as I could. The way she wished me was very considerable as she knew I am struggling to take care of myself and I cannot do much. The chat we had was really present as there was no pity or resentments. We just enjoyed each other’s company and smile. Even her ambulance officer gave me gorgeous smile as he pushed her stretcher out of the Transit Centre.
Then I noticed an old gentleman with overnight bag brought in. He was frail and his body language was telling that he was very scared. Friendly staff was asking if he needed to lie down on the bed, but all he could do was just mumble some words to himself and nobody seems to understand what he wanted.
A nurse came and trying to take his information and was trying to coordinate something over the phone. She was obviously frustrated by unfruitful conversation with the man, so she was concentrating on the telephone conversation with hospital ward.
Little earlier, I saw a man waiting for his father to be brought into the Transit Centre. As soon as his father arrived, he was there at the side of the stretcher and they were wheeled out from the Centre straight away to their destination.
This old man didn’t have anybody. He must be alone just like me, and he was very scared just like I would be in his situation. He tried to get attention from the nurse who was on the phone to organise something. But she was looking at the other way. It really broke my heart as I have been ignored when I needed help many times before. So I stood up and walked towards her to signal that the poor man needed her help. She was very frustrated and didn’t even smile. She went to the man, but couldn’t understand what he wanted. She told him that she was trying to get him to the ward and went back to her phone. The poor man became even more curled up and was talking to himself as if he was crying. My heart sank. I felt I was looking at myself.
I stood up again and sat next to him. He tried to move his bag to give me more space. But I begged him not to worry about it. I caught his eyes and smiled at him. I knew it would only frustrate him if I try to talk to him, so I didn’t say a word. He weakly smiled back. I hope he knew I wanted to help. His body language showed he was relaxed a little bit. I remembered the day when I collapsed at supermarket and a kind lady sat next to me and assured me I was not alone. I remembered how she comforted me just sitting next me and holding my hand.
Friendly staff noticed me and came to ask if he would like foot rest so that he could be little more comfortable while he was waiting. This time, he accepted the offer and the staff brought the foot rest and pulled his legs to sit comfortably. She even brought a blanket to keep his legs warm. I noticed the man relaxed a little bit more.
My ambulance arrived. I waved the man good bye. I wished he would be okay. At least, I knew he was in good hands, and he would be looked after. Most of the hospital staff I met on the day was friendly and happy to work there. I felt their pride that they are helping people in needs.
It was a private ride back home. There was no other patient to be picked up or dropped off. I felt the exhaustion of the day, but was satisfied inside.
The ambulance officer even accompanied with me walking very slowly from the ambulance to the door to make sure I would not fall. I mentioned to him that I was very impressed. And he said I had to wait to see him save lives before I get impressed. I felt, “Dah!!! That is his job; saving lives! Not just transporting sick people.” But I didn’t need to see him saving lives. That would be an extremely amazing thing to witness. But what he and his co-workers did for me that day was more than enough to impress me. Maybe, he didn’t realise how his support and friendly attitude saved me and how great job he is doing.
I didn’t know how to express my gratitude. I tried to tell him that I was very grateful for his service.
I crashed on my couch receiving overwhelming welcome from my dogs. I was relieved that I surviving the day and back home safely to my dogs. I was also feeling rich inside from people I met on the day.
It was a long exhausting day. At the same time, it was equally satisfying day.
A hospital staff with walky-talky pushed me in wheelchair. While we were waiting for an elevator, she chatted with people she knew. Just looking and hearing their conversation was amusement to me. Sitting in a comfortable wheelchair, I continued to feel I was in Harry Potter’s magical world.
Since I need to my head down when I walk in order to conserve energy and strength and to avoid collapsing from exertion, I can no longer observe scenery while I am out.
In the wheelchair, just look at walls, doors, ceiling and people passing by without worrying about collapsing was the realisation of how much abilities I have lost to ME/CFS. While we were moving on terrace like hallway, I noticed a huge food court area on the ground floor. There was a big sign of Starbucks. I wished I could go there and have a nice cappuccino. I don’t remember when I had a good coffee at café last time. But today, I just have to be satisfied with looking at the coffee shop and lots of people getting their favourite coffee at the counter.
It is a huge hospital. Even though she was pushing me from Transit Centre, not from the front entrance, the ride seemed to be forever and I was grateful again for my GP to organise the transport service. Now I was very sure that I wouldn’t have survived the day without the service.
Finally, we arrived at a quiet Neurology Department. The hospital staff talked to the receptionist and left for her next patient.
After a short wait, I was greeted by a lady. She had a cool salon hair cut, but somehow kept her warm personality. And it was creating unique and welcoming atmosphere. She introduced me that she is a technician not a doctor. She calmly chat with me and asked what my problems were. She asked about my life. But I didn’t have much happy or positive story to tell her, so I asked if I could ask about her life. She didn’t mind and told me about her work, what she likes to do if she gets some spare time and etc.
She started putting gel on my head and connecting wires. She explained that it was the most time consuming part and the actual test would be only about 10 minutes and I would not feel any pain at all.
We kept talking about epilepsy and ME. Funny thing was she told me that many doctors don’t understand epilepsy and they just tell it doesn’t exist just like ME/CFS. Since my GP requested the EEG even I didn’t have hallmark epileptic seizure, I was once again impressed by his deep knowledge about medical conditions. It is not really my place to feel this way, but I couldn’t stop feeling proud of my GP.
Before the test, I imagined that the EEG would be conducted in a dark room and they might put on flushing light in my face or play annoying noise. But it wasn’t like that at all.
Room had ordinary office light throughout. There was no annoying noise, but must have some unrecognisable noise (could be some machine humming…) as I had little difficulty listening to her voice as if I was in a noisy pub trying to listen to friends.
I also thought the wires were just to monitor brain activities, but they may be sending some signals as I experienced different body movements and sensations during the test. I was asked to close and open eyes during the test. It seemed Nystagmas (uncontrolled eye movement) was out of control and she put a cloth over my eyes and asked me to press it to stop my eyes from moving around. (After the Centrelink Interview, I felt it got worse again, but usually I don’t notice it unless I try to read or focus.) I didn’t know what she was doing, but I was feeling tensions in my head. And jaw jerking and Myocolonus (involuntary muscle jerking) started. One stage, I was getting overwhelming tension in frontal and temporal lobe area and she asked if I was okay with concern in her face.
Then she asked me to breathe deeply. As she had explained that deep breathing would not be needed, I suspect something was showing as abnormal. Because of asthma, taking deep breath was not easy. Dr TL explained before that asthmatic has more difficulty breathing out than breathing in. And it was exactly like that. I tried to breath in more air but my lungs were already full and I was just puffing air like a fish out of water…
When the test was ended, she pulled all wires off from my head and wipe off thick gel from my head. They didn’t come off completely and it felt like I had hair gel.
It was a very easy test. All I had to do was to open and close my eyes whenever she asked, and then take deep breath. But I was feeling very exhausted and my body was moving around as if I had a mild Parkinson’s disease while I was waiting for someone to take me back to the Transit Centre.
EEG is the test when epilepsy, Parkinson’s disease or dementia is suspected. From the symptoms I was having, I wouldn’t be surprised if I was diagnosed with frontal lobe epilepsy or mild Parkinson’s disease. But as a typical of ME/CFS, there may be no abnormality at all despite of all the symptoms.
I was back at the waiting area, and I had to lay my upper body over two chairs. Myocolonus was in its full swing as well, and I remembered reading the test might trigger epilepsy episode. The kind technician came out check on me as she knew I cannot sit up for long time. She double checked with the receptionist who was ready to go home that the Transit Centre was requested of picking me up. Then, she took me to a quiet room to lie down on a comfortable day bed. As she left the room, she turned the room light to dim and I just amazed and appreciated for her compassion.
Finally the transport staff picked me up. He took a different route back. According to him, he was taking a short cut. We cut through wards, and I exchanged lots of smile with staff and hospital patients while going through the wards. We also chat on the way and I enjoyed the wheelchair ride back to the Transit Centre. It is just amazing to realise that people around me become friendly and nice when I am being cared by someone else.
I was settled into a comfortable chair next to a beautiful and friendly 89 years old lady. We enjoyed chatting and I was amazed that she can do much more than I can and her quality of life is much better than mine. And I was very happy to hear that she is enjoying her life. When her ambulance came to bring her back to her excellent nursing home, she wished me to look after myself as much as I could. The way she wished me was very considerable as she knew I am struggling to take care of myself and I cannot do much. The chat we had was really present as there was no pity or resentments. We just enjoyed each other’s company and smile. Even her ambulance officer gave me gorgeous smile as he pushed her stretcher out of the Transit Centre.
Then I noticed an old gentleman with overnight bag brought in. He was frail and his body language was telling that he was very scared. Friendly staff was asking if he needed to lie down on the bed, but all he could do was just mumble some words to himself and nobody seems to understand what he wanted.
A nurse came and trying to take his information and was trying to coordinate something over the phone. She was obviously frustrated by unfruitful conversation with the man, so she was concentrating on the telephone conversation with hospital ward.
Little earlier, I saw a man waiting for his father to be brought into the Transit Centre. As soon as his father arrived, he was there at the side of the stretcher and they were wheeled out from the Centre straight away to their destination.
This old man didn’t have anybody. He must be alone just like me, and he was very scared just like I would be in his situation. He tried to get attention from the nurse who was on the phone to organise something. But she was looking at the other way. It really broke my heart as I have been ignored when I needed help many times before. So I stood up and walked towards her to signal that the poor man needed her help. She was very frustrated and didn’t even smile. She went to the man, but couldn’t understand what he wanted. She told him that she was trying to get him to the ward and went back to her phone. The poor man became even more curled up and was talking to himself as if he was crying. My heart sank. I felt I was looking at myself.
I stood up again and sat next to him. He tried to move his bag to give me more space. But I begged him not to worry about it. I caught his eyes and smiled at him. I knew it would only frustrate him if I try to talk to him, so I didn’t say a word. He weakly smiled back. I hope he knew I wanted to help. His body language showed he was relaxed a little bit. I remembered the day when I collapsed at supermarket and a kind lady sat next to me and assured me I was not alone. I remembered how she comforted me just sitting next me and holding my hand.
Friendly staff noticed me and came to ask if he would like foot rest so that he could be little more comfortable while he was waiting. This time, he accepted the offer and the staff brought the foot rest and pulled his legs to sit comfortably. She even brought a blanket to keep his legs warm. I noticed the man relaxed a little bit more.
My ambulance arrived. I waved the man good bye. I wished he would be okay. At least, I knew he was in good hands, and he would be looked after. Most of the hospital staff I met on the day was friendly and happy to work there. I felt their pride that they are helping people in needs.
It was a private ride back home. There was no other patient to be picked up or dropped off. I felt the exhaustion of the day, but was satisfied inside.
The ambulance officer even accompanied with me walking very slowly from the ambulance to the door to make sure I would not fall. I mentioned to him that I was very impressed. And he said I had to wait to see him save lives before I get impressed. I felt, “Dah!!! That is his job; saving lives! Not just transporting sick people.” But I didn’t need to see him saving lives. That would be an extremely amazing thing to witness. But what he and his co-workers did for me that day was more than enough to impress me. Maybe, he didn’t realise how his support and friendly attitude saved me and how great job he is doing.
I didn’t know how to express my gratitude. I tried to tell him that I was very grateful for his service.
I crashed on my couch receiving overwhelming welcome from my dogs. I was relieved that I surviving the day and back home safely to my dogs. I was also feeling rich inside from people I met on the day.
It was a long exhausting day. At the same time, it was equally satisfying day.
Filed under: Disability, ME/CFS