Living with Intractable Diseases and Disabilities.

It’s nice to meet you. I am Potsupoto. I have written about my disabilities, chronic illnesses, work history, and qualifications. I hope it can be helpful for others who are dealing with similar health conditions or disabilities.

My incurable disease or disability

Incurable Disease (Stage 5 of Neurofibromatosis Type 1)

Many of you have probably never heard of neurofibromatosis, but I hope you will take this opportunity to learn about it. It is a very frightening disease. It is caused by a congenital chromosomal abnormality. I have Stage 5 of this incurable disease, which means "the most advanced stage of the disease, causing great difficulty in daily life.

I had surgery when I was in the third grade of elementary school, and since then I have had many surgeries. After the surgery, I have to stay in bed because the wound is painful and I cannot move for a while. Especially when I was in elementary school, I could not sleep because of the pain, and it was just too painful.

In my case, my bones are deformed and I have physical disabilities. The deformation of my bones causes pain in my legs and back.

I also have tumors all over my body, and I have pain all over my body. Tumors in the intestines and pelvic region can cause bloody stools and bleeding, anemia, dizziness, and fatigue. The tumor may also become malignant. Therefore, regular visits to the hospital for a thorough examination are necessary.

Tumors on the surface of the body can cause appearance problems. I have lost my self-confidence due to the discriminatory comments I have read on the Internet and other media. I lost my self-confidence and became unable to fall in love.

Even looking at myself in the mirror, touching my tumor, and so on, depresses me terribly. I feel so depressed that I feel like I am going crazy.

It can also cause developmental disorders.

As described above, neurofibromatosis is a very frightening and intractable disease with serious physical and mental effects.

Neurodevelopmental Disorders (ASD, ADHD) Co-Occurring

Developmental Disorders. I have been told that I have exactly half ASD and half ADHD traits, which I think is a little unusual in my case.

As for my symptoms, as a child, I suffered from scene disturbances and tics. At school events, I would suddenly freeze up and not be able to do anything, but it was painful because no one understood me.

Also, regarding choir competitions (which I had in junior high and high school) and music classes, when I was in the first year of junior high school, I heard auditory hallucinations and laughter that I was not a good singer. Since then I became afraid of singing. Even if I forced myself to sing, it was incredibly stressful. I mean, in the end it was impossible for me to sing. Furthermore, I couldn't even play an instrument anymore because I thought I was terribly bad at playing an instrument. It was very painful.

I was also troubled by difficulties in daily life, such as being late, forgetting things, not being able to write on the board, and getting angry for some reason.

Schizophrenia.

Symptoms include nervousness that I am being watched, someone is chasing me, and I hear voices making fun of me. I have been on the run and ended up at a completely unknown station.

I have been told many different diagnoses of mental illness. I was told I had bipolar disorder type 2 and was on lithium carbonate and olanzapine, I was told I had depression and was on duloxetine and aripiprazole. Whenever I change medications, I experience withdrawal symptoms, dry mouth, and severe constipation at the beginning of each dose.

These are very hard days.

Bronchial asthma

Coughing before going to bed or waking up from sleep.

Other illnesses

I also have sudden hearing loss and facial paralysis. I am sad because of my physical weakness.

My employment history and at a transitional employment agency

Current Occupation

Office Worker (4 years)　※Employment of people with disabilities
Previous OccupationCaregiver (11 years)
Supermarket clerk (1 year)
Sushi chef (1 year)
Convenience store worker (1 year)
Golf course worker (2 months)

Details of my work history and employment transition support office

I worked as a care worker for about 11 years, but developed schizophrenia, was hospitalized in a closed ward of a psychiatric hospital, and retired.

After being discharged from the hospital, I went to a labor transition support office for one year and three months and found employment on the basis of disability. The labor transition support office I attended had a very detailed program. The program included computer training, light work training, business manner training, office work training, and group work.

Job hunting at the labor transition support office: (1) I failed two companies in the application screening, (2) I failed two companies in the group interview, and (3) I was hired by the fifth company. The job hunting period was about six months.

I wanted to be a chef. Before my nursing job.

I worked at a sushi restaurant in a hotel in Tokyo. At that time, my incurable disease worsened and I retired. I then underwent surgery.

After leaving the hospital, I worked at an Italian restaurant, but my intractable disease worsened again and I underwent surgery. Based on these experiences, I gave up my career as a chef.

After leaving the hospital, I worked part-time at a supermarket. Then the intractable disease worsened again, and I underwent surgery. After that, I started working as a caregiver.

Currently, because I have had too many surgeries (I have been having surgeries since I was in elementary school), I have decided not to have any more surgeries because my skin is not recovering well.

Other than that, I worked as a ball picker at a golf course and a part-time job at a convenience store when I was a student.

It was a very difficult life.

As I stated, there were many difficulties.

Also, my incurable disease has a 50% chance of being passed on to my children if one parent is involved. In my value system, the child must also be given up.

I learned this early on and was very desperate. The shock was immense. I cried every day for a while. I lost the meaning of life and the energy to do anything. I became lethargic and lost interest in my studies and relationships.

It was too painful mentally and physically.

It can be painful, but it can also be fun.

Even though it is hard or painful, I work, and with my wages I am able to enjoy my hobbies and have wonderful times with my friends and family.

Also, recently I have been involved in various donation activities. If I see a donation box, I try to donate. Even if I have a disability or an incurable disease, I can still help someone.

Right now I enjoy many fun things: classical concerts, tennis, reading, listening to music, appreciating art, movies, cooking, playing the piano, wine, coffee, karaoke, talking with friends, playing with my cat, and so much more!

This is my qualification history.

Finally, I have recently been working hard on my qualifications. I would like to grow little by little.

Thank you for reading.