Before I drifted into the negativity with the what if scenario any further, I heard “Konnichiwa”. As soon as I walked into his office, Dr TL tried his new Japanese on me. He said it so quickly that he almost bit his tongue, I think… He made me laugh already and made my fears disappear.
He told me I looked well as a compliment and asked how payback is going. I told him I still have muscle fatigue and weakness, although there was no more pain. It is a long lasting payback…
He told me his son is now into Origami. He is making lots of Origami dinosaurs. I joked he would soon have a black belt in Origami. He told me that the little one is still enjoying playing the piano, too.
Dr TL himself is very into music now. He showed me an online learning aid that flashes musical note on the screen and he demonstrated how well he remembers them. I was very impressed. Since my musical notes are in Japanese, I secretly practised it with him.
He is also practising something something blue something at home. I asked if it is jazz. It must be a piece that beginners play at a piano lesson. I don’t know how they teach piano in Australia.
We chat about what kind of music we like to play. I told him that he could find some sheet music online to play. Well…, he already had printed one out. It was an easy right hand version of the music I regularly play. I thought I could play left hand for him. Arr…, maybe it’s not so good idea. It is the music that left hand often invades right hand territory, and sometimes they tangle each other. It could be a bit too flirty for us.
He asked if I had any luck finding a digital piano. I told him I don’t think I can find a good piano. I’ve been looking, but they are out of my reach. I’ll keep my eyes out just in case. One day, I could get very lucky.
He suggested to find a place where I could play there piano, such as community hall. I feel it is not a good idea for me to go out to play. (And community halls are not freely open for people these days…) I prefer to stay at home. I can only play up to 30 min on my good day. Then, I need to lie down to rest. If I’m not home, it would be a problem. To me, playing the piano is a rare action activity…
He asked how often I go out. He knew the answer; not much. He asked if I feel apprehensive about going out. I had to say yes. He also knew I worry that I might get ill in the middle of doing something and stuck there, or I worry that nobody would help me when it happens. I tried to explain just in case that it is not my anxiety nor paranoia that is stopping me from going out. I cannot go out because I’m physically very fatigued, weak and sick. I don’t have the energy to last the full outing. I know he is just trying to understand my life with ME/CFS.
He took a moment and quietly asked the next question.
“Do you feel trapped?”
This question caught my emotion. I looked away from him and said yes.
“It’s really hard sometimes.”
I explained without looking at him.
“It is ALWAYS hard.”
His compassion assured me he knows how I feel.
I used to go out a lot and enjoyed meeting people. I could be called a social butterfly. Now, I cannot go out and I have nobody to meet up. It depresses me often. At the moment, I’m longing for human touch. When you are isolated, you cannot even get a hug… I didn’t tell him but I feel I could go out sometimes if I had someone I feel comfortable to help me. I didn’t want to tell him the negative that won’t have any solution.
We changed the subject.
My PFM was better in his office again. He let me try three times and encouraged to produce better result. I couldn’t produce the result as he liked to see. It was disappointing… I mentioned that the three records were consistent. Often, I can only produce one good result and other not good ones. Producing three consistent records is still very good. He cheered me. He also gave me a good news that my lungs are sounding better recently.
We discussed about exercises. I still cannot start the routine yet. He asked how do I know when I could go back to the exercise. He used the word “apprehensive” again… I couldn’t tell exactly how. I just know when I can do exercises without getting me into trouble… At the moment, my energy level is very low and I frequently crash. It is not only about exercise, but also I seriously need to budget my energy. I have very limited energy in a day, and I need to allocated them to do housekeeping, personal hygiene, and other daily essential tasks. Sometimes, extra rest to do extra task… He told a few accounting jargons and told me I was talking like an accountant. We laughed. I was probably getting too serious. At the moment, I have to lie down after each small exertion. Maybe, when I can do things longer without needing to lie down, that would be the sign my energy level is improving. Then, I would feel confident to start the exercise again.
He mentioned I was doing well for about 6 months. He asked if I knew the reason why I’m having energy problem. I just didn’t have the answer. Even last year, I had struggling period before I started the exercise. It could be just seasonal. When I started exercise, I was doing okay for a while. Then suddenly struggled again during the winter. I started crashing. Then, I had a few weeks of break. Then, I started it again. After a couple of weeks, I started crashing again… I told him that I’m not avoiding the exercise. I’m very keen to go back to the routine, but I’m just not well enough at the moment. I didn’t want to disappoint him, either. He knew I was not avoiding it. He was just as frustrated as I was… I sensed he was going to mention about “nursing home”, but he didn’t. He must know how frustrated I was.
He ordered blood tests. We haven’t done this for about 6 months. If I get blood taken the following day, we would have the results by Saturday. Then, it could give us some indication why I’m struggling so much at the moment.
We shook hands and said Sayonara. Then, I heard him telling he would keep practising (playing the piano). I looked back and told him that I could teach him (the music he selected today). He said it was okay because he is practising a little every night. I hope I get to listen and see him play the piano one day.
Now that he is into the piano at the moment, I have to wait longer to read his blog about terrorism and vaccination. 
Posted in Doctors, ME/CFS
Before I drifted into the negativity with the what if scenario any further, I heard “Konnichiwa”. As soon as I walked into his office, Dr TL tried his new Japanese on me. He said it so quickly that he almost bit his tongue, I think… He made me laugh already and made my fears disappear.
He told me I looked well as a compliment and asked how payback is going. I told him I still have muscle fatigue and weakness, although there was no more pain. It is a long lasting payback…
He told me his son is now into Origami. He is making lots of Origami dinosaurs. I joked he would soon have a black belt in Origami. He told me that the little one is still enjoying playing the piano, too.
Dr TL himself is very into music now. He showed me an online learning aid that flashes musical note on the screen and he demonstrated how well he remembers them. I was very impressed. Since my musical notes are in Japanese, I secretly practised it with him.
He is also practising something something blue something at home. I asked if it is jazz. It must be a piece that beginners play at a piano lesson. I don’t know how they teach piano in Australia.
We chat about what kind of music we like to play. I told him that he could find some sheet music online to play. Well…, he already had printed one out. It was an easy right hand version of the music I regularly play. I thought I could play left hand for him. Arr…, maybe it’s not so good idea. It is the music that left hand often invades right hand territory, and sometimes they tangle each other. It could be a bit too flirty for us.
He asked if I had any luck finding a digital piano. I told him I don’t think I can find a good piano. I’ve been looking, but they are out of my reach. I’ll keep my eyes out just in case. One day, I could get very lucky.
He suggested to find a place where I could play there piano, such as community hall. I feel it is not a good idea for me to go out to play. (And community halls are not freely open for people these days…) I prefer to stay at home. I can only play up to 30 min on my good day. Then, I need to lie down to rest. If I’m not home, it would be a problem. To me, playing the piano is a rare action activity…
He asked how often I go out. He knew the answer; not much. He asked if I feel apprehensive about going out. I had to say yes. He also knew I worry that I might get ill in the middle of doing something and stuck there, or I worry that nobody would help me when it happens. I tried to explain just in case that it is not my anxiety nor paranoia that is stopping me from going out. I cannot go out because I’m physically very fatigued, weak and sick. I don’t have the energy to last the full outing. I know he is just trying to understand my life with ME/CFS.
He took a moment and quietly asked the next question.
“Do you feel trapped?”
This question caught my emotion. I looked away from him and said yes.
“It’s really hard sometimes.”
I explained without looking at him.
“It is ALWAYS hard.”
His compassion assured me he knows how I feel.
I used to go out a lot and enjoyed meeting people. I could be called a social butterfly. Now, I cannot go out and I have nobody to meet up. It depresses me often. At the moment, I’m longing for human touch. When you are isolated, you cannot even get a hug… I didn’t tell him but I feel I could go out sometimes if I had someone I feel comfortable to help me. I didn’t want to tell him the negative that won’t have any solution.
We changed the subject.
My PFM was better in his office again. He let me try three times and encouraged to produce better result. I couldn’t produce the result as he liked to see. It was disappointing… I mentioned that the three records were consistent. Often, I can only produce one good result and other not good ones. Producing three consistent records is still very good. He cheered me. He also gave me a good news that my lungs are sounding better recently.
We discussed about exercises. I still cannot start the routine yet. He asked how do I know when I could go back to the exercise. He used the word “apprehensive” again… I couldn’t tell exactly how. I just know when I can do exercises without getting me into trouble… At the moment, my energy level is very low and I frequently crash. It is not only about exercise, but also I seriously need to budget my energy. I have very limited energy in a day, and I need to allocated them to do housekeeping, personal hygiene, and other daily essential tasks. Sometimes, extra rest to do extra task… He told a few accounting jargons and told me I was talking like an accountant. We laughed. I was probably getting too serious. At the moment, I have to lie down after each small exertion. Maybe, when I can do things longer without needing to lie down, that would be the sign my energy level is improving. Then, I would feel confident to start the exercise again.
He mentioned I was doing well for about 6 months. He asked if I knew the reason why I’m having energy problem. I just didn’t have the answer. Even last year, I had struggling period before I started the exercise. It could be just seasonal. When I started exercise, I was doing okay for a while. Then suddenly struggled again during the winter. I started crashing. Then, I had a few weeks of break. Then, I started it again. After a couple of weeks, I started crashing again… I told him that I’m not avoiding the exercise. I’m very keen to go back to the routine, but I’m just not well enough at the moment. I didn’t want to disappoint him, either. He knew I was not avoiding it. He was just as frustrated as I was… I sensed he was going to mention about “nursing home”, but he didn’t. He must know how frustrated I was.
He ordered blood tests. We haven’t done this for about 6 months. If I get blood taken the following day, we would have the results by Saturday. Then, it could give us some indication why I’m struggling so much at the moment.
We shook hands and said Sayonara. Then, I heard him telling he would keep practising (playing the piano). I looked back and told him that I could teach him (the music he selected today). He said it was okay because he is practising a little every night. I hope I get to listen and see him play the piano one day.
Now that he is into the piano at the moment, I have to wait longer to read his blog about terrorism and vaccination.
Posted in Doctors, ME/CFS