- Getting T1D (Type 1 Diabetes)
When I was in 2nd grade at high-school, I got Type 1 Diabetes. It was summer.
During summer vacation, I was feeling too dull to stand up from the floor and I was very thirsty that I could not stop drinking tap water so much, then I went to toilet many times even while working in a part-time job.
“I thought it is caused by summer heat.”
One day during the vacation, I went pear picking by bicycle but I got cramps in my leg many times on the way. I picked many big pears to my home.
The next day, I was offered to go to the hospital by my mother. Checking my blood and the doctor simply said to me.
“Satoshi, you have gotten Type 1 Diabetes. You have to be hospitalize right now.”
I was not able to eat my big pears…
After that, I was told many things about T1D by the doctor and nurses. “What is T1D” and “How to live with T1D”.
First, T1D is NOT INHERITABLE and NOT because of LIFESTYLE.
Secondly, my body does not allow my glucose level to get low so I have to inject insulin by myself before meals and bed. If I was not able to adjust the amount of insulin, my blood glucose level goes too high or low (hyperglycemia or hypoglycemia) and whole of my body suffer. Specifically,
“Losing my sight by hyperglycemia”
“Amputating my legs and arms by hyperglycemia”
“Dying brain cells by hypoglycemia”
- Decision to live!
My hospitalized life was too boring so I was thinking of such disease complication. As a result, I began to think about my health condition and appreciate my life and my mother giving birth and raising me.
Therefore, I decided to live the best of my life while i can.
“I may lose my sight” but now I can see. I can read books. I can enjoy the views.
I went to the library after leaving the hospital immediately and I started reading many categories of books. I got to feel like visiting many places where I have never been then I went to Korea alone in that winter.
“I may have to amputate my legs and arms” but now I have them. I can walk. I enjoy sports.
I have played Taido (a kind of Japanese martial arts) since my university age. I walked through many places in Japan when I was a student in a graduate-school, the longest mileage was about 700 km from Osaka to Chiba for 3 weeks. I have injured my body many times by playing sports and extreme walking but I have enjoyed them using full potential of my body.
“I may die by hypoglycemia” but now I am alive. I treasure the time and I want to have a lot of experiences while I exist.
- My 3 challenges as a T1D patient
・I want more people to know T1D
I also didn’t know T1D until I got it, but in Japan, the number of the patients is about 100 ~ 140 thousand in 2018 so 1 in 1000 people has T1D. However there are few people who knows T1D. It often seemed as type 2 diabetes when I said “I have type 1 diabetes” so I say at first “I have to inject myself before meal” after that, I conclude is T1D.
We should not neglect the sufferings of T1D patients because of the low awareness.
Many patients feel uncomfortable that “what if my T1D is revealed” in addition to simple symptoms. For example, many patients avoids injecting themselves publicly due hyperglycemia. late treatment because some people cannot tell about their status, declining to eat given food since we have to inject on time. But because of the society and lack of awareness we may have to go to hidden places to treat ourselves(like injecting ourselves in the bathrooms or closures).
I think these problem can be solved more or less to raise the profile.
However one of my friend in Finland, when I told him that “I have to inject before eating”, he replied “Really! “do you have type 1 diabetes? Have you endured hypoglycemia?”
But there is no one with T1D around him.
I want the world to be aware of type 1 diabetes and what we go through to survive.
・I want to know and spread the treatment technique.
I have taken part in the patients association, YOKOHAMA VOX (held 2 times in a year) since 2018. There are hundreds people, patients, doctors and others involved about T1D. I can discover new information for myself every time.
When I was hospitalized, nurses told me that “I have to change the needle of injection every time” but there are a few people whom I met in the meeting changing the needle every time and most people leave the needle on the injection for a day or even 10 days! and also same as the needle, which is used when I test my blood glucose level.
I was told that
“You can use it only once so if it doesn’t work, you throw away the needle and use new one”
But it can be also used repeatedly by using a tricky way which is not dangerous, it can reduce trash.
Then, I got to inject whenever I eat at all and I measure my blood glucose level frequently.
There are many ways which most patients do normally (by themselves) but we cannot be taught in hospital.
I think if there are many communities such as the meeting, we can share many information and change our own customs then we become healthier.
Anyways, in Northern Europe, the disease rate of T1D is higher than Japan but the death rate in Finland is about half as Japan in 2003 cf. It may be better or advanced treatment of T1D in Japan but I want to know the daily life with T1D in Finland and other countries and I try to imitate and spread good customs.
・I want to summarize information about trip with T1D
I love to travel so I am going all over the world for 2 years from May 2019. But there are many trouble for example “How can I get insulin in foreign countries?” “How much is the cost for a medical bill?” “Can I join the insurances for trip overseas?” “Are there region where I have to pay attention to save insulin for climate?” etc.
I will gather information and answers of these questions during my trip and summarize information about trip with T1D.
I am challenging 3 things “I want more people to know T1D” “I want to know and spread the treatment technique” “I want to summarize information about trip with T1D”