They say, stress is an enemy for immune system and ME/CFS. In fact, stress is enemy for any illness.
I have been on bad flare with higher than usual low grade fever. My mobility is also deteriorating that I now need to use wheelchair for the GP appointment in order to avoid collapsing. When I start collapsing, I lose strength, so that I cannot lift wheelchair back to the car boot or I cannot hold onto walking stick. When I collapse, I became paralysed, possibly twitching and shaking as if I’m having a seizure, unable to talk or communicate with other people. I feel humiliated and become emotional when this happens in public. All I need is to lie down in quiet until all these go away, but public doesn’t know. On my bad day, I am more likely to collapse by pushing my limit just a little. Sometimes, unfortunately, I have no choice but have to gamble with my luck and go out to get things done.
ME/CFS is the condition that is keeping me disabled. The fact that I no longer have any doctor who would understand and treat it became a massive concern to me. Seeing a ME/CFS Specialist in Brisbane became my hope. To make it happen, I had to find someone who would drive me and push me in wheelchair to the clinic.
A kind friend offered me to ask her family to be that person. It means her family has to drive at least 1 and half hour to pick me up, drive to the clinic for about 40 minutes, wait for me to finish the appointment, then drive back to my place and back to his home… He might have to repeat it for a couple of times depends on how appointment goes… I felt it was too much trouble to ask, but I need the help for my future. At least, I wanted to make sure I have checked all possibilities before I accept such an extremely kind offer.
I made an appointment with my current GP to renew some prescriptions. I was also going to ask if I could have the medically aided transport to the specialist clinic in Brisbane. I was told that the medically aided transport was only for hospital visit. I just wanted to make sure it was absolute that they cannot make any exception for an isolated and very sick disabled patient that seeing the specialist is very important for her health and her future.
When I phoned to make an appointment with the local surgery, a rude woman answered angrily with just “Yeah?” From her rude manner, I knew it was the Practice Manager/Nurse. When I told her who I was, she got panicked. Without giving me the opportunity to tell why I rang, she put me on hold to transfer to the reception. How pathetic! This is the woman who promised to support me and I could ring anytime when I have any problem… (Obviously, she doesn’t want to talk to me now.) She attempted to get rid of me in a very mean way. Two faced person disgusts me. I would have walked out and found another surgery if I was the healthy and able-bodied patient who could do so.
Receptionist was just as cold and she also didn’t tell me who she was. I just made an appointment and ended the call. I didn’t bother double checking it. If the Practice Manager delete the appointment without telling me again, so be it…
After this interaction, “finding another surgery” was added to my wish list. I don’t deserve to be treated like I’m an unwelcome patient. First, I need to become a patient of the ME/CFS Specialist who can explain and instruct how to treat me to GPs who don’t have any knowledge about ME/CFS. I have to be patient not to fire the current GP because I still need him for prescriptions. He is the only GP I can have at the moment.
To my surprise, there was a sense of relief on the appointment day. Receptionist on duty wasn’t hostile towards me. The GP kept his friendly demeanour and dropped some hints that he was aware that I’m very ill and conscious that I was waiting long in the waiting room. I told him that I don’t mind waiting and I didn’t want him to hurry because of me. I mean it. All patients need his attention, too. If my GP gives good attention to other patients, it’s a sign that he/she would treat me the same. Patients without medical knowledge cannot plan how long their consultation should be. GP wouldn’t know it either, until they listen to their problem. I understand it’s impossible for GPs to be on time.
I still don’t know how to think of him, but it was good enough to know that he still consider I’m one of his patients despite of the last uncomfortable meeting. I managed a small talk with him to let him know that I’m a cooperative patient.
Prescription wasn’t a problem. He managed to get approval for authority prescription. He checked how I take each medicine and double checked the timing of the prescription request. He double checked he issued all prescriptions I listed. I can tell he is a meticulous person who cross all ‘t’s and dot all ‘i’s.
Then, I explained my hope that he would authorise “Medically Authorised Ambulance Transport Form” for me to be able to see the ME/CFS specialist in Brisbane. There was a little difficulty in making him understand “medically authorised transport” and “ambulance”. I tried to explain differently. My ex GP authorised the form when I needed to go to hospital. I just don’t know what Ambulance Office does with the application, but these days, a volunteer from Senior Citizen’s Centre would come and take me to the destination with their car instead of ambulance.
There was a little pause, then he asked how often I would see the specialist. Well, I don’t know… I might need to see him several times at the beginning, but it might become once a year… The GP worried that I might need to see the specialist every week. Well, I doubt it.
He asked when the appointment is. I explained that I cannot make the appointment until I find someone to take me to the clinic. I hoped he realised how desperate I am to have a doctor who understands and treats ME/CFS.
He told me to come back to fill the form when I made the appointment. That was his way of saying “Yes, I will authorise the transport.” I jumped in my mind! I expected him to say “No”. He had no idea how delighted I was to hear his agreement. It changed everything.
He also doesn’t mind me having ME/CFS specialist while I’m under his care despite he doesn’t want to hear anything about ME/CFS. He showed to me that he cares and is willing to support me as long as it has nothing to do with ME/CFS. With his transport authority, I can have a ME/CFS specialist. This meeting changed the tide. Now, the situation has changed and it is the best if I stayed as his patient.
Two days later, a misunderstood receptionist phoned me and tried to fill the form over the phone. It surprised me. I explained her that I don’t have the appointment yet. I just confirmed that the GP would authorised the transport the other day, so that I can make an appointment with the specialist. And I would make another appointment with the GP when I ask for the form. (I don’t expect or demand people to do things differently for me. I’m not arrogant. I follow their rules as much as my body can cooperate.)
I made the appointment with the specialist. Waiting time was only a little over one month, which was another surprise. I’m waiting for the questionnaire to arrive before organising the transport. One thing at a time…
I’m nervous about the meeting with the specialist. But, I’m not scared because my friend gave me a very nice character reference about the specialist. She gets alone very well with him. It means there is a good chance that I can, too.
I’m excited. It is a one step forward for my positive future.