On Wednesday morning, I went to the Logan Hospital for Bond Uni ME/CFS Research blood collection.
Dr TL authorised Ambulance Transport for me about a month ago. I get community transport by Senior Citizen Centre, instead of Ambulance these days. I think Qld Government has cut their spending. Accordingly the use of Ambulance for hospital transportation has significantly reduced. There used to be Ambulances come and go at the hospital Transit Centre, but I hardly see any these days. It’s okay by me because I feel Ambulance is too dramatic. However, I wish I could lie down while being transported so that the burden on my body would be less.
Dr TL expressed his wish that the research team would collect blood from his surgery(, so that the burden on me is a minimum). He is compassionate like that. The research team had explained to me before that they couldn’t do that due to their budget. I told Dr TL that I would be okay and I would manage. It is important to me to participate because I feel I’m doing something for my future.
It was my lucky day and I had lovely drivers both way, which makes a huge difference. The first driver remembered me. He volunteers once a week, and enjoy meeting and chatting with senior citizens. He mentioned again that I’m much younger than his usual clients. He expressed his sympathy and wished I would get better one day. I appreciate it although there is no cure for ME/CFS at the moment. I hope the research could bring something to treat ME/CFS one day… He has a Japanese friend and he tells me about her as if she is my friend. We mentioned about the earthquake and tsunami, and he explained how nice Japanese people are. It’s so nice to hear nice things about my race instead of being hated because how I look.
The driver assembled my wheelchair and pushed me in it to the hospital transit centre. I was starting to feel weak and nauseous already from being the passenger of the car. I should have reclined the back of the seat since there was no other passengers. But I don’t feel comfortable to do so with the male driver I don’t know well…
A staff from the Transit Centre pushed me to the Pathology straight away. I felt it would be too early since the research assistant suggested to be there around 9:45 am.
There wasn’t many people waiting at the Pathology. I didn’t spot anybody for the research, either. It was a little disappointing because I was hoping to meet someone and have a little chat. At the same time, it was for my favour because I didn’t have to wait long to give blood. I didn’t see any research team, either.
Pathology staff is always friendly there. One of them remembered me from the very first blood collection when I crashed in the car on the way to hospital and had to lie in the bed at the Transit Centre. She came to my bed side to collect the blood. It’s nice to be remembered, I think. (It’s possible that my “crash” coincide with pathological change, but it’s just one off incidence of one participant…)
The staff took about 10 tubes of blood as usual. Then, I had to fill one page questionnaire to tell how I’ve been feeling prior to the blood collection.
Transit Centre staff pushed me back to the centre. I started feeling I was slowly crashing, so I struggled to shift in one of their reclining chairs. I lift the foot support, but I already lost the strength to pull the chair to reclining position. So, I rest my head on the arm rest. I covered my face with my scarf because the light was too bright to bear. Nobody came to ask if I was okay… I heard someone mentioning I was here for pathology. I could visualise her eyes rolled…
I heard commotion. I looked and saw other patient was about to go home. Someone came for her with a wheelchair. Transit Centre staff told me I was going home. It confused me…
The driver from the Senior Citizen Centre misunderstood the note on the form and brought their wheelchair. Since one of their drivers got angry with me in the past because nobody told him I have a wheelchair, I persistently request the surgery receptionist to write the note that “I’m taking my own wheelchair with me” on the form. The driver misunderstood the note as they have to provide a wheelchair for me… And she also thought other patient was her client because I’m too young for her usual client. She is not the first one to make that assumption.
The driver introduced herself with a friendly smile. She seemed a little nervous… She excused as she had to put her wheelchair away before she takes me to her car. Then, she realised she has two wheelchairs for one car… Ah, oh…
When she came back, she helped me to shift back on my wheelchair. With half crashed body, everything became effort. I was grateful that she didn’t boss me around what to do, but wait for me to ask what I need. When we got to her car, I saw she somehow managed to pack her wheelchair at the foot space of back seat. This means I cannot recline the seat backwards… And she packed my wheelchair in the boot.
She had air-conditioning on in her car and she only had short sleeve uniform, while I was freezing with winter wool jacket and scarf. She asked if I wasn’t too cold. I couldn’t tell I was because she was obviously feeling hot after pushing me in the wheelchair and managing two wheelchairs packed in one car for me.
She realised my hands were icy cold and turned the air conditioning off even she was feeling very hot. She tried to open her side of window, but she decided to close it for me as well. I felt very bad, but I didn’t have strength to ask her to be comfortable. While being driven home, my body crashed slightly more and dyspnoea was getting worse. I was once again grateful that the driver kept brave face and gave me smile to assure that she is there for me if I need something. I could still tell she was very nervous.
When we got to my place, I asked her to drive into the drive way because I didn’t think I could walk the sloped driveway now. She didn’t mind the request, opened the tricky front gate and drove in. The little help like this makes a huge difference and it is such a great relief when I have someone to do it for me.
She admit that my wheelchair is a little tricky to assemble, but she did a good job. I waited for her to drove out the drive way and close the front gate for me before I open the front door and let Basil run out. The house was icy cold despite I left a bed room heater on for him.
My body remained half crashed for the rest of the day and the next day. And I got very sick in the afternoon probably because the flu got worse from the exertion or I picked up extra virus from the hospital.
As I told to Dr TL, I managed and I would be okay. There will be one more blood collection at the end of the year, and that will be the last. Since the research is proving positive result as there is some pathological abnormality in people with ME/CFS, I feel all my efforts and set-backs from participating is worth it.