It has already been a month since I went to Aoyama Madarame clinic in Tokyo on April 12. I received treatment for Myalgic Enchephalomyelitis[ME] (better known as Chronic Fatigue Syndrome[CFS]).

I felt both physically and mentally lighter after the treatment. I hope this post will be of help for those who need information on ME/CFS treatment.
Aperture: ƒ/7.1,  Focal Length: 18 mm,  Exposure Time: 1/500, ISO: 100
The weather was beautifully sunny and dry. Thanks to the heavy rain the day before, the air was fresher and clearer than ever. It was a perfect day for going to a clinic(?) (For the record, the building in this picture is not my clinic.) 

出発 | Departure

Three weeks prior to April 12, I made an appointment for 1:30pm for my brother and for 2pm for myself (two slots for 30minutes, for each of us.) 
I go to the clinic with my brother by car in order to save money on transportation costs, so I had to drive. However, I could not get to sleep until the morning and I had only had a three and half hours of sleep, despite the fact that I went to bed before 11:30pm and tried to relax.

This was definitely the roughest morning I had since starting these trips to Tokyo, but I started feeling better as I was getting ready for the trip. So I decided to go anyway.

It usually takes about three hours to get to the clinic even when I take the expressway. I LOVE driving, so I was excited about driving on the expressway for the first time in a while, but it really was rough.
Fortunately, the traffic was extremetly smooth thoughout the trip. Thankfully, we got to our destination in two hours and 45 mintues! 
Aperture: ƒ/9,  Focal Length: 200 mm,  Exposure Time: 1/1250, ISO: 320
I took this picture at Moriya Service Area. I wish I could have stayed there a little longer for more shots, but I did not want to be late either. 

到着 | Arrival

I parked the car in a parking lot that's in a three minute walk from the clinic. Time for treatment.  
My clinic is on the sixth floor in a building, and you cannot get there without an elevator ride. I found out, however, that there was only one elevator button about one meter above the ground. Severe ME/CFS and fibromyalgia patients who use a wheelchair may need assistance to get to the clinic because of this.

診察 | Treatment

During the session, kyu (acupuncture using dried leaves burned instead of needles) is practiced, so I took off all my clothes except my underwear prior to it.  

I told my doctor about how I'd been doing over the past year, and he taught me how to practice kyu on new spots. He practiced kyu on the back of my head and on both sides of my pelvis while instructing what I need to pay attention to.  

However, I can remember only half of the things that he taught me because of my terrible night's sleep. I hope I feel better when I receive treatment next time.

The thirty-minute sesson ended in a flash. For the record, you do not have to wait before your treatment as long as you make an appointment. ME/CFS patients can easily be exhaused while they are waiting for their turn at a clinic, so it is truly blessing that there is virtually no waiting time.

治療費 | Fees

The fees are listed on the clinic's official website, so I will cite them here. 

・初診料:30分 12,960円(税込)
First visit: 12,960yen (tax included) for 30 minutes

・再診以降:原則的に15分1枠 18,360円(税込)
Following visits: 18,360yen (tax included) for 15 minutes

I took two slots for 25,920yen(tax included). I wish the fee was a bit lower or health insurance covered the bill at least...  

班目先生のアドバイス | Advice from Dr. Madarame

I told Dr. Madarame that I could not get up before 11am. Then he said: 
"You can't get up because your body needs that much sleep in order to function."

I had only been told by other doctors to go to bed earlier, so I was happy to finally know why I couldn't get out of bed as early as I wanted to. What is more, it was a great relief that he took my sleep problem seriously. 

I told him I'd had a hard time adjusting to the seasonal temperature fluctuations:  
"Decide what to wear according to the lowest temperature."

This time of year, it is never easy for ME/CFS patients to wear comfortabe clothes due to changes in the weather because most of us are extremely susceptible to temperature fluctuations. If I wear thick layers I get overheated easily. But then if I wear lighter clothes, I get cold easily. Now that I know that, it will be easier to choose clothes every day. I just need to be careful not to wear clothes that I will get cold in.

I told him that I just could not get to sleep until way after midnight:
"Few Olympic athletes can get to sleep the night before their big day, and no one who stays up late can win. They have to stay in bed and try to relax as much as possible in order to perform to their utmost potential."   

Although I have been told that I was "lazy" or "self-centered" so many times during the 22 years of my life with ME/CFS, not a single doctor but Dr. Madarame compared a ME/CFS patient to an Olympc athelete, so I like this comparison. ME/CFS patients have to fight against persistent pain and discomfort 24 hours a day, 365 days a year, so we are fighters in a way.

In addition, Dr. Madarame told me that your brain can rest when you stay in bed with your eyes closed, even if you are not asleep. Since then, I am less irritated during a sleepless night.

東京散歩 | A walk in Tokyo

I took a little walk around the clinic before going in.
Aperture: ƒ/8,  Focal Length: 200 mm,  Exposure Time: 1/1600, ISO: 640
A pair of grey starlings were eating lunch beside a busy street. I was really surprised that they were not intimidated by people. In my yard in Ibaraki, they are so cautious that they fly away when I try to watch them behind the curtains. I was able to get as close as 40 centimeters to them.

▲動画も撮りました。I also filmed those birds.

Aperture: ƒ/7.1,  Focal Length: 18 mm,  Exposure Time: 1/60, ISO: 125
A newly launched LC500 was displayed at Lexus Minami-aoyama. Lexus teams are using this car to compete in GT500 class in Super GT this year. I like LFA the most among all Lexus cars, but the LC500 looks really cool.   

Aperture: ƒ/8,  Focal Length: 18 mm,  Exposure Time: 1/60, ISO: 320
After treatment, my brother and I had a late lunch at our favorite hamburger shop, Harakara. We both had a lunch set (1,000yen) with grilled onion and sunny side up eggs on a standard hamburger. 
Aperture: ƒ/8,  Focal Length: 20 mm,  Exposure Time: 1/25, ISO: 1600
The hamburger was so awesome! The sizzling hot french fries were also incredibly tasty. If you're anywhere near Minami-aoyama, go grab a bite here! 


まとめ | Conclusion

I am truly glad that I was able to see the doctor because I was feeling so unwell that I had to consider cancelling.

As a matter of fact, all my symptoms, "brain fog" in particular, began to worsen in September of last year, and I have not felt better since. However, I did not have an upset stomach or high fever during that period. Not only that, my pollen allergy reactions have also become milder. So it was encouraging to talk about my improvements with Dr. Madarame. 

As always, I felt much warmer after treatment, and my sleep-deprived head got cleared up (enough to drive.) And we drove back home safely.

I would like to visit again in six months or so if possible.


関連記事 | Related posts

Read other posts on Myalgic Encephalomyelitis [ME/CFS]>>HERE


使用機材 | Equipment

Camera:Sony a6000

Lens:E 18-200mm F3.5-6.3 OSS (SEL18200)