I paid the fee. Since I had been told how much the initial appointment would be, I didn’t get a heart attack. Comparing to the expensive fees I paid in the past to Psychiatrists and Rheumatologist only to get further damages to my body and system, I feel the fee I paid for ME Specialist today was worth every dollar.
I got about 1/3 rebate from Medicare, and the rebate was already in my bank account that night. The out of pocket part of the fee was covered by my kind friends as a gift. I’m very grateful that I have friends who are understanding, considering, sharing the every aspect of suffering from ME/CFS, and concern about my crisis and theirs.
While I was trying to ring the Senior Citizen’s Centre to let them know I was ready to be picked up, the driver walked in. What a timing!
I was a little surprised that the driver was much younger than usual volunteers. He must be a staff driver. There was a little apologetic tone in his voice that we were on traffic chaos hour and he had to pick three more passengers from different hospitals, therefore, I might be in the car for a while. I assured him that I know that nobody can control traffic and I’m grateful that he would take me home. The most important thing was to see the ME Specialist. Now that it happened successfully, nothing else worries me.
I think we were surprised that we were both much younger than we expected. His apologetic demeanour continued, so I assured him that I would be okay. In fact, there was nothing he should feel bad about. Being a housebound, I don’t have an opportunity to get out. Being in a car and be driven through the City was entertainment for me, so I take the advantage and enjoy.
The silence between us was also making us feel awkward. So, I asked if there was a possibility for me to access the transport service by the Senior Citizen Centre without doctor’s authorisation. I don’t mind paying the small fee each time. I need to go/do a few things, such as visiting optometrist, dentist, shopping for the items I cannot get online, and etc, but I cannot go/do it without having someone help me. Also, I still want to participate in the future biomedical researches, however, that wish became impossible since my local Surgery refused to authorise the future transport for me. So, I hope the Senior Citizen’s Centre would take me if I paid a fee.
The driver explained about other support the Senior Citizen’s Centre provides for its members. I asked what is involved to apply for the membership. He was hesitant because I was too young to apply… He suggested that community/home care would provide the service for me. I explained that there is only one organisation that provides the service in my suburb, and they had refused to give me the service I needed. I had to cancel the service all together because they made me feel as if I was being bullied.
He encouraged me that there is something out there, but we just need to know the right person to access it. His boss might be the person and he promised me to ask her about it on behalf of me. That was very nice of him, and it made me feel a little easier about my life.
Time has shifted into my functional hour, which helped me not to collapse in the car. And I did enjoy the drive through of the new City Tunnel, looking at skyline of humongous new and historical city buildings. There were lots of constructions going on to each hospital, which made the traffic worse. The driver explained that the paintings of children in earth-moving equipment at the side of Children’s Hospital construction site represents each children living in the hospital and there was the children’s name of each painting. I should have taken photos of those paintings…
One by one, the driver picked the passenger up from different hospitals. They all have different personalities, yet the conversation was interesting. And the driver even gave us his personal story… I liked the woman who sat behind me who talked quietly but had lots of stories about people with rare and difficult illnesses. She is having tough life for herself, but she had gratitude. We had an old gentleman who mostly pretended he wasn’t there. Then, we had this woman who gives commands and complaints as if she is a queen. I was relieved that her strong perfume didn’t reach me this time.
One by one, the driver dropped the passenger at their home.
When there was just the driver and me again, we kept talking. He talked as if we were good friends and it was very nice. Since I lost the caring GP, I haven’t talked with anybody like that.
The driver looked a little worried when he dropped me. I wished all the best with the study he is undertaking. He was a little stressed by that, so I cheered him up to think about the day he finished the study. It would be nice if we could be friends, but I suspect it’s against their policy.
Suddenly, the heavy and overwhelming exhaustion pounced at me. Before my body gets paralysed eventually, I grabbed a packet of snack and ate it while I could. I realised I should organise a few days supply of ready to eat meals when I have the next appointment. Preparing decent meal and washing up after were definitely impossible.
I was in the car for nearly 3 hours this time and it was becoming very clear that my body and system were under heavy strain from the day.
The driver’s boss phoned me the following day and suggested to contact another community/home care organisation. She kindly phoned them on behalf of me and found out they would service in my suburb. When I recover from the current on-going PENE, I will ring them to organise their assessment visit.
I’d leant from my past experiences that people/organisation don’t take me serious when I ask for a help by myself, however, they become a little open minded when someone else who concerns about me contact them. Therefore, a manager from the Senior Citizen Centre contacted them on behalf of me is giving me a little hope.
At the same time, I’ve learnt that government funding in this area is sucked by aged care/support and there is not much left for disability care/support. So, I still prepare my mind for the disappointment that they wouldn’t help me because of my age or their funding restriction.