We are not alone! It`s all about ME!! | SaYaHaのハワイでAlohaな生活♫



Dance & Fitnessのプロで、PUMAを始めスポーツブランドのアンバサダーやFitness/Yoga/Danceモデルを経験。


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!!