The "This Is My Normal" Life
First of all,
【Brief Self-Introduction】
Originally from Kansai.
Currently living in Hokkaido.
Not knowing the cause of my poor health, I decided to change my environment,
leaving the Kansai region where I was born and raised for Hokkaido.
It has been nearly 15 years since I started living in Hokkaido.
This year marks my 7th year of marriage.
Living as a couple.
Currently, I cannot be of much help with the family cattle business,
so I am pouring my energy into being a library volunteer at a local elementary school,
a role I was invited to take on thanks to my past experience as a librarian.
In my 30s.
A patient with "Familial Mediterranean Fever."
The "'This Is My Normal' Life"
I feel unwell and go to the hospital for a checkup.
Then,
I get diagnostic results like "There are no abnormalities," or
"There are no problems."
"There is nothing in particular to worry about."
I just get some fever reducers and go home.
This has happened many, many times before.
Since I was a student,
I have had a fever every day:
low 37°C range in the morning,
high 37°C range during the day,
and 38°C range at night.
Once a month, my fever rises to over 40°C
and lasts for about a week.
Along with that high fever,
I also experience headaches, abdominal pain, chest pain, and joint pain,
and fluid even accumulates in areas where I have pain,
such as my abdomen, chest, and joints.
And they say there are no abnormalities...?
When they say there are no abnormalities, there is no treatment or anything.
I just take antipyretic analgesics when my fever is high or when I have body pain.
This is my normal, and
I have no choice but to live in this state.
"This is my 'healthy' state."
"This state is just the usual for me."
"This state is my normal!"
I tell myself this every day.
"My headache is just because of the weather."
"My body aches just because I did some physical labor."
I tell myself this every day.
This state has continued for about 20 years.
The body gets used to things,
and I stopped feeling the fatigue even when I had a fever.
However, society is not that kind.
From the outside, it is obvious that I have a fever.
My colleagues worry about my red face...
My superiors worry that they cannot take responsibility if something happens...
"We cannot have someone with a fever working. Take a leave of absence, get treatment, and return to work once you are healthy."
That is what the company told me, but
I was told "no abnormalities" at many hospitals,
so there was no treatment or anything.
In the end, I was fired...
I thought it might be psychological,
so I tried changing where I lived,
but it did not change.
As expected, "this is my normal."
However, one day, a light shone through.
"Having a constant fever is dangerous for your body. There must be a cause somewhere. Please let me study your case."
I met a doctor who reached out to me like that.
Since then,
thanks to that doctor's introduction, as if everything until now was a lie,
I was able to meet doctors at various hospitals and in various departments,
and thanks to everyone's help,
the cause of my long-term poor health was identified.
"Familial Mediterranean Fever."
It is a rare intractable disease,
and even among doctors,
many did not know the name of the disease.
It is still in the research stage and is a disease that cannot be completely cured.
However, because it was diagnosed,
it became easier to control,
and above all, I felt relieved.
And,
I was able to meet my current attending physician,
who is kind and reassuring,
and who faces and supports me through this difficult disease.
From now on, forever,
I will have to keep taking medicine every day
and need injections every four weeks, but
for now, all is well that ends well.
I thought.
But,
life is not that easy...
Another new,
"This Is My Normal!!" Life Chapter 2
is attacking me.
It started around the time my disease in Chapter 1 was diagnosed.
24 hours a day,
I started to constantly feel a swaying sensation,
like I am riding a train that is swaying quite a bit.
Walking is difficult,
I hold onto things firmly when I stand,
and even when I am sitting, I lean against the backrest
and if I do not hold onto the armrests firmly,
I have the sensation that I will be thrown off.
I sway even when I am sleeping,
as if I am riding a sleeper train.
Sometimes I even wake up in the middle of the night from the swaying.
I remember the day I rode the "Twilight Express" a long time ago.
But in reality, I am in bed.
I wonder if this is what Mal de Debarquement Syndrome feels like...
This state has been happening every year
for the past five years.
Once it starts, it lasts for several months.
I have also had this symptom
checked by multiple hospitals and multiple departments,
but the cause remains unknown.
I wonder if the cause of this will also be known in a few years?
The "This Is My Normal!!" life, I wonder... if it will continue... for a while longer...
It is okay! I will enjoy life in this state.
Although there are times when it is inconvenient because I have to give up many "things I want to do," I want to find new "things I want to do" that I can do in this situation and enjoy life!!
Sometimes,
it is heartbreaking that I end up causing trouble for the people around me...
Every day my heart is warmed by the kindness of the people around me,
and although I am grateful every day...
I hope I can repay them
in a way that I can.
Thank you for reading.
May you all be visited by warmth🍀
If you would like,
I am writing about what happened after this article below
Furthermore,
if you would be so kind,
a work of fiction based on a true story,
incorporating my medical examinations and life battling illness until I received a diagnosis.↓
To highlight the "Yokubaris" in the title,
the character profile ended up being different from my actual self (sweat),
but I have documented my experiences regarding the symptoms, meeting my primary doctor, and the process of tests and treatments.
If you happen to pick it up,
I would be very happy.
Thank you very much for reading my personal article.