This is a letter to you who feel all alone stuck at home
struggling to live everyday life with ME/CFS.
You probably feel nobody else understands
what you are experiencing daily and
you cry days & days worrying about what`s ahead of your life.
Believe or not, you are NOT ALONE!
I am one of you.
It came all of a sudden, without any warning....
May 13th 2013, it was my B-day.
With my own dance studio, I was working 6, 7 days a week,
teaching dance, managing the studio, competing
and everything you can possiblly imagine.
With the studio going great and the business was growing,
finally I took a b-day vacation to Hawaii with my friend for a week.
I never expected that the fun, active beach time I spent in Hawaii
was the last moment of myself being perfectly healthy.
All these pictures are me, just right before I got MEcfs.
As soon as I came back from Hawaii, I got really ill...
It was so easy to simply lift me left to right
& up-side-down before ME/CFS,
but I was so so so weak that I couldn`t even hold a book...
A tiny book was too heavy to lift.
Quite frankly, I hardly have much memory
of the first 2 months I got sick
as I was so weak and was simply sleeping days & nights.
I really thought I was melting in my bed/sofa as I could barely
move myself out of bed.
I had no idea till much later that having emotions require energy.
Those first few months, I didn`t even cry, I didn`t smile...
I had no emotion.
All I can remember was that I was sleeping forever as if I were dead.
It was not even my choice to leave my baby, the dance stuido
I built from the scratch for the others to take care of it.
It was not even my choice to leave the US
to Japan where I lived for years
as I couldn`t keep my visa for not being able to work
= not being able to sustain the visa status as I am not American.
I had to give up everything and left for Japan where my family resides.
Yes, it`s all so horrible, but you know what?
I am very positive & optimistic.
It`s ture there is no definite treatment to cure MEcfs now,
but I have been improving, slowly, but gradually.
To be honest, dance is way too big of a part of me to live without.
It`s a part of my life that I can`t imagine life without it.
Of course, with MEcfs, I can`t do any crazy excercise.
but, I`ve spent months after months to gradually built my energy
to do 10 min yoga, 15 min yoga and now to 60 min yoga.
I also even went for swimming the other day and swam 1.5km!
Of course, these are possible on my good days, but
on my good days, I can do these!!
Currently, I am 20% to 25% of where I was a year ago,
but I do see the light ahead of me.
I`m taking very tiny baby steps, but those are coming together.
So don`t give up!
We will get there.
When I first got sick, I really felt alone.
Before MEcfs, I was always surrounded by many people and
I`ve grown up in multiple countries .
I lived in a big big world, but suddenly my world became my tiny room.
Don`t want to say it, but many times I thought I was dying, but
I am still here.
If you are still new to MEcfs and don`t know what`s going on with your life,
don`t give up and don`t think you are alone.
We are all here.
I do have some bad days, but I am having more better days so
I want you to all know, you can reach out to me.
I guess it`s quite funny that
May 12th is ME?CFS International Awareness Day.
It`s only a day before my b-day ...
What I can do is very limited, but with us all, we are so powerful.
Let`s get together and we all all go back to the stage we belong.
Blue for ME/CFS!!