MS in Japan

by Samantha
(Tokyo)


As of this year (2016) February, I finally went to see a neurologist about symptoms I was having. Thinking it was something to do with a pinched nerve, I was astounded and heart broken to be told it was most likely MS by my Japanese doctor who was struggling to communicate with me. Living in Tokyo for over 4 years, I could never have imagined I would have to deal with this situation sitting in a waiting room in Japan, with my phone that had just died and tears rolling down my cheeks as I kind of knew what MS was...


Away from my family, fearing for the unknown and dealing with the Japanese language. That day was definitely an outcome I did not predict for my future...

So lets go back two years ago when my naivety prevented me from checking out the issue then and there. This was my first bout of symptoms. At the time I had symptoms were my left leg would start to tingle like you had just been sitting on it for an hour and get up and have those horrible pins and needles. This would occur when I walked or ran. The feeling would pass but it would always occur again when I started to move. It got to the point were the tingles were so bad I couldn't walk very far with out stopping and starting and stopping...

But silly me didn't go and check it out. It finally did stop and life seemed to go back to normal and I forgot about it and it went into past memories. But the party of bliss didn't last long...

So, lets come back to February shall we. Ah, this was the month I was determined to lose my extra belly fats and started a heavy course of exercise and strict diet and by Jo did it work! I lost 5 kilos in less than 3 weeks. However, to ruin the celebrations this was also the trigger to my second set of symptoms.

These symptoms I found out were called "The barber Shop Syndrome". For all of those fine people who aren't aware of this bag of joy, basically it affects your neck/spine. Every time you look downward you feel an electric pulse/tingles that run all the way down to the back of your legs. On top of this, my left hand had kind of a dullness to it.

By this point, I threw in my towel and got to the bottom of it! How I wish it weren't this outcome though...

So for two weeks I was hospitalized all while dealing with a team who couldn't put an English sentence together. Very stressful indeed. But to add to my stress a heartache occurred. My dearest coworker was hospitalized at a different hospital (an hour away) and was in a coma. After getting my spinal tap the day before (and we all know what a treat that is) I let myself out of my hospital and rushed over to him. I wasn't aware of the severe headaches you can get from a spinal tap and was in agony as I held is hand in his bed...

Finally I had to leave as the pain was too hard to deal with. I gave my friend one last kiss on his forehead and left. When I got back to my bed in hospital I received a call that he had passed an hour after I had left. That night I was crying alone in my bed for my friend who died. Everyone told me I had to think about myself and that stress makes MS worse...but how could I? The man I had spent four years in Japan died...

I checked myself out for the day again to go to his funeral. Still wearing my hospital wrist band and the eyes that looked down at it questionably. I kept telling all the heartbroken people not to worry about me but be brave for the family who had lost their son...

No one told me that when you go through hard times, harder times hit you yet. That was one of the hardest days of my life and I've had hard days...After the funeral I could finally concentrate on my treatment... But I was worn out.
After another week in the hospital I was finally allowed out to start my "new life" and continue my treatment.

I decided on the every other day treatment and for someone like me who is afraid of needles... I have overcome a lot... It was hard, what am I saying... It's still so hard to get use to. I'm not even sure I am seeing any affects. It seems the tingles have now moved to my right hand as well as both hands every time I shower... (*Sigh)

Not only do MS sufferers have the daily reminders that we aren't OK... the tingle here... the tingle there... but the fear is even greater that one day the feelings are never going to leave and that the worse is yet to come. I have been on my treatment for 4 months and one week and I won't be able to find out if this course is working or not...

That all the money spent (over four thousand dollars) so far, has been for nothing or not... That should I have just called in quits in Japan and gone home in February? This anxiety is forever going to be with me... the unknown is scary and the unknown in Japan is far scarier. That's why I decided in October I'll be coming home to Australia.

I'm scared and I'm scared of how my body is reacting to this treatment. I'm scared of the strange feelings in my body... I'm scared of feeling like I'm alone in this world and nobody can truly hear me scream out in frustration and loneliness... I'm scared that every time someone comments "how well you look", "You look completely fine", that they truly don't understand what's happening inside me, inside my body and how much of a prisoner I am, tied to a sinking ship which has It's holes being plugged by bubble gum...

My name is Samantha Reeves. I am 26 years old and I have Multiple Sclerosis. I have been dealing with this in a non-English speaking country and am continuing to keep it all together against all the odds that happened during my admission into hospital as well as having no one to talk to this with, who can truly understand the loneliness inside. I think to myself; Be brave, and hold onto that, when that's all you have to hold onto in a sinking ship...

This is my story so far and I want to share it with all of you. I'm not sure where my story will take me. But I will be brave.
Thank you for reading x

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Aug 08, 2016
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Be Gentle with Yourself
by: Jane Drebus

Hello, sweet Samantha. You made a huge step forward when you wrote your story! Of course it's not easy getting a ms diagnosis in Japan as well as suffering the loss of a special person! It will take some time to adjust, but it can be done, and you can do it.
Most of us with ms come to find that it's a disease with sometimes horrendously obnoxious symptoms, ones that often play games with our minds, but not ones that threaten our lives. I got my diagnosis at a young age too, 24. I'm 67 now, so I've been through a lot of ms. Sleep will help you most; stay well rested. As much as possible stay away from stress and heat! Know that fever and infection will make you worse. Find a neurologist you can relate to and decide on a treatment plan early, as well as a support group when you are ready. You can do this!

Aug 04, 2016
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be brave
by: elena

My dear
Nobody knows the ms outcome. Most of us if we are careful and watch out for our nutrition we have a good life. I mean i have ms since i was 24 years old and i m 47 now (three kids) ...i feel better now than when i was younger.
Focus on your body, start some yoga breathing and stretching you will feel healthier.
big ...long ...hug!
Blessings.

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