As we greeted with “Konnichiwa” on Saturday, Dr TL told me that he needed to learn more Japanese vocabulary. According to him, he only knew two words, Konnichiwa and Sayonara. I was thinking he knew much more than two. Ninja, Samurai, Katana, Sensei, Gaijin, Hi, and more…
As I was stepping up on the scale, he told me he actually knew one more; Boke. Since there was no context, I was wondering which Boke he was referring to; Forgetfulness, Japanese quince, or… He picked up my confusion and explained it means unfocused, blurred or fuzzy and it is one of photographic technique. Ah, hah! It makes sense. I knew photography was one of his hobbies.
Then he showed me a website with his son’s photo. It was really nice portrait with deliberate shade on half of his face. He told me he didn’t take it. And they didn’t give him the print, even though they used his photo on their website.
I remembered a photo journalist friend from Japan. He spoke reasonably good Japanese, but he liked me accompanying to his assignment sometimes, so that he didn’t have to deal with curious Japanese. He also liked to get in, get the job done, and get out, in order to process the films and deliver his work immediately. Sometimes, people requested him to send the photo he’s just taken, but he always refused. Taking photo was his business, not hobby. I guess there were also copy right issues as he was taking photos for news papers, magazines, and his personal portfolio.
Just in case you get a wrong idea about him, he was nice and he respected Japan and Japanese. He was like my big brother and he looked after me.
After I left Japan, I lost contact with him. I found his website recently. But I feel there is no point contacting him as I’m now sick and disabled, and probably he is very busy with assignments and his family.
While checking my blood pressure, Dr TL explained that surgeons are like that. They get their jobs done and are not interested in communicating with patients. I guess some job require such attitude. However, I’m grateful that my doctor likes people and has good people skill.
He complimented I looked well. I explained I was still going through bad flare up from the stress. He asked me what happened. I reminded him the delivery man.
“That’s right! Trauma!”
He thinks the incident was “traumatic”, not just stressful. He asked if I heard something from them. I briefly explained the communication mishap, and told him I would wait until after Easter to hear from Manager B. He was very sceptical that I would hear from her again. But I am willing to give them some time, although I’m not hopeful that anything will be rectified for me. I like to dot all “i”s and cross all “t”s, before I step up to the next course of action.
He suggested finding their PR department and talking to them instead of the manager. Then he explained the reason why he believes this would work. Big Company fears bad publicity about their business, therefore, they would treat me extra special and want to please me in any way they could. They are opposite from bouncer at night clubs. Then he was making all the macho poses. It made me laugh a lot. My laugh encouraged him further. He kept coming up with funny comments and ideas.
Then he mentioned that laughing is good for my health, just like singing. Ha Ha. I was too exhausted to fall for that trap and sing in front of him.
He kept coming up with funny ideas and jokes. When I was trying for Spirometer/Peak Flow Metre (PFM) record, he cheered me with “Ninja!” or “Katana!” He got excited that Katana gave me better reading. He grasshoppered me (saying “You’ve done well, Grasshopper.”), so I saluted to my Master.
He kept firing jokes. When he was administering Ventoline (asthma reliever medicine), I had to look away from the spacer because I couldn’t stop laughing.
Today, Ventoline made me tremor a little. And first couple of post Ventoline Spirometer try didn’t give me any satisfactory result. We gave it the last try with big efforts. He gave me good cheer and I produced a good record for my condition. I thought for sure that he was giving good effect on my health.
Then, I showed him the record of Spirometer/PFM at home. I told him that I cannot do exercise due to the bad flare up, therefore, there were no pre and post exercise record. We are both eager for me to get back on the exercise since it made improvements.
He looked at the record with interests. I keep fatigue in numbers. I also keep blood pressure when I try Spirometer. And it brought us to the discussion in research on exercise. He thought it could help finding something about ME/CFS.
I explained that there was two day exercise trial and they found we perform significantly worse at the second day. I didn’t really feel the finding was significant, as we all know we perform worse with repeated tasks and we suffer from Post Exertional Malaise (payback). He explained it to me that the significance is the scientific fact with numbers, not just knowledge. When knowledge becomes scientific fact with numbers, it can be used for further research. Okay, now I can agree that it was a significant finding for us.
I also explained other research regarding on ME/CFS and exercise, which is on hold because they run out of funding. It was just one day exercise, but they collected blood sample. They found different chemical composition in blood between people with ME/CFS and control group.
We also talked about difficulty in researching for ME/CFS. Since we are so different from each other, selecting sample for ME/CFS is quite a challenge itself. In the past, samples were chosen from just tired people not from people with ME/CFS and it ended up producing misleading information. Naturally it caused unfair stigmatisation and discrimination against us. So, we agreed that sub-categorisation of ME/CFS is necessary.
Despite of all the negativity towards biological research for ME/CFS, Dr TL still believe that research for ME/CFS is an exciting field. Since there is not much findings, there will be so much to be done. However, we agreed to leave the research to scientists. We will keep pondering on day to day basis to find effective management for my case through trial and error. I am lucky because my doctor is patient.
While we were talking, Dr TL mentioned “C” word, the cure. We both know there is no cure, nor effective treatment for moderate to severe ME/CFS. In my mind, uttering the “C” word is daring. But when I hear it from a doctor, I feel it is possible although it will take very long time. And I also feel it is his commitment to me as a doctor to keep supporting me until I get better enough, even if it is a very very long time.
He reminded me that our appointments are still twice a week. However, he is giving me Wednesday off, so that I can rest and get back to my base line quicker (hopefully). Since all the stressful things happening to me at the moment, this was really a good news for me.