Talking about my health condition. (病気のハナシ。)

One of my fellow volunteers who suffer from MS (Multiple Sclerosis) had a little fall at work yesterday as she was about to leave.

昨日、ボランティアの一人でMS（多発性硬化症）という持病を持っている女性が帰る直前に仕事場でちょっとひっくり返っちゃたの。

I don’t remember how we got to talk about our health problem, but we did anyway. Then another volunteer overheard us and I had to explain her about my seizure and how to deal with it when it happens.

どうやって病気の話になったのか覚えてないけどまぁ、そういう話になったのね。そしたらもう一人のボランティアが側で私たちの話を耳にしたもんで、自分の発作の事や、発作が起きた時の対応とか説明しなきゃなんなかったのね。

I said, “The last I had a seizure was 2 and a half years ago, but it’s only because I’ve been super careful. I don’t go out when I have the symptoms such as twitching around my mouth and eyes, migraine, or body jerk.”

「前回の発作は２年半前だけど、それはすごく注意してるからなのね。ワタシは口や目の回りがぴくぴくする時や、偏頭痛がする時、身体がびくっとする時は外に出ないの。」って言ったの。

Nowadays I can talk about this condition openly as if it’s nothing but a condition, and it really is a mere health condition.
Anyway it took me a long time to open up about my ‘secret’. It used to take a lot of courage and effort to speak up. But once I came out of the closet, it gave me a relief as I had nothing more to hide or be embarrassed about.

今はこれは単なる病気で何でもないかのように話せる、それに実際これって単なる病気でしかないし。
兎に角、この「秘密」を堂々と話せる様になるまでには時間がかかった。昔は話すのにすごい勇気と精神力が要った。でも一度カミングアウトしたら、すごく楽になったの。だって、もう隠すことも恥ずかしいこともないから。

It’s no denying that there are certain disadvantages that I face in the society. In fact, as I was talking to the woman with MS, she advised me not to mention about my epilepsy at circumstances such as a job interview, which clearly shows that this condition can be a major issue at job applications.
No wonder why many epileptics feel that they are discriminated.

社会の中で壁にぶち当たる事（この病気が不利になる事）がある事は否めない。実際、この多発性硬化症の女性と話しているときも、てんかんである事を仕事の面接とかでは言っちゃダメよってアドバイスされた。って事は就職活動でこの病気が大きなネックになりかねないって事だから。
てんかん患者が差別されていると感じるのも無理はないよね。

There are organisations and support groups for epileptics. The problem is that many of these are almost exclusively for epileptic patients and/or their families. Their activities involve fundraising, emotional support, and improving our own understanding of the condition and such. But I think what’s more important for us epileptics is to gain confidence in ourselves, become proud of ourselves as individuals, and to free ourselves from any burden caused by so-called ‘the dark secret’.

てんかん協会とかサポートグループとかいろいろある。問題はその多くがほぼ完全にてんかん患者とその家族の為の機関だって事。活動内容には募金活動、精神的なサポート、患者や家族自身のてんかんへの理解を高める事などが含まれるのね。でも、ワタシはそれよりももっと大事なのはワタシ達てんかん患者が自分に自信を持つこと、個人としての自分にプライドを持つこと、そして、いわゆる「暗い秘密」から来る精神的ストレスから自分を解放する事だと思うの。

I sometimes find it sad that there’re no feedbacks from non-epileptic people when it comes to this condition, as if it were a big no-no. It would be helpful to know what non-epileptics think and feel about this condition. It doesn’t matter if people get scared by watching someone having a grandmal, and feel sorry for the person or simply find it disgusting. It’s normal as that’s what I might have felt if I weren’t an epileptic myself. Believe you me, if you see me having one of those major seizures you’ll freak out because the impact is overwhelming. But reading this, I hope, makes you realise I’m still a person with fairly strong personality.

時々、てんかんの話になると、てんかん患者以外の人からの反応がなくなる事を寂しく感じる。まるでてんかんの話がすごいタブーかなんかみたいに。
本当はてんかんでない人がこの病気にどんな認識を持っているか知れたらいいのにと思う。大発作を目のあたりにして怖いと思う、可哀想と思うとか、或いは気持ち悪いと思うとかそんなの構わないの。だってそれが普通だし、ワタシだって自分がてんかんじゃなかったら、そう思うかも知れないし。
言っとくけど、ワタシが大発作を起こすのを実際に見たら、間違いなく引くよ。ショックが大きすぎるから。でもワタシの書いているのを読んでたら、ワタシがそれなりに強い個性を持った人間だってわかる筈だし、わかって欲しいな。

I grew up spending a long time with this aunt who developed the clonic rheumatism at the age of 17. She has artificial joints all over her body, and gone through many operations in her life.
But she has always been positive and cheerful, and surrounded by many friends who are inspired by her. So you can imagine how big an inspiration she was to me.

子供の時から17歳の時に慢性関節リウマチを発病したおばちゃんと長い間過ごしてきた。おばちゃんは全身の関節が人工関節で何回も手術を経験してきたの。
でも、いつも前向きで明るくて、そんな彼女に惚れ込んだ友人にいつも囲まれてた。だから、彼女にワタシがどんなに影響されたか想像つくと思う。

Shit happens. Unfortunately I was chosen to be an epileptic. Let’s call it my fate. It sucks sometimes. I feel like shit when I have an episode. But I still believe that a human being is capable of coming to terms with and overcome whatever happens in one’s life, no matter how hard it may be, if s/he chooses to.

いやな事って絶対にある。ワタシは運悪くてんかんって病気になる事を「運命」づけられちゃった。時々くさるし、発作を起こせばクソみたいな気分になる。でも、ワタシはやっぱり人間ってのはどんな事があっても受け止める、乗り越える力があるって信じてる。そうしようって思えばね。

The precaution I need to take

I feel a bit sick.
The symptom is cough, not sneeze.
The splitting headache.
It must sound like flu if you're a normal person, but to me it's perhaps associated with my epilepsy.
I often have bronchitis-like attack before an episode, which means the current symptom is a foreboding that I can't dismiss.
Well, I do have chronic bronchitis, but I've learned to control my coughs most of the time. Only when I cannot control the cough attacks, is the sign that I might have a seizure. (People who are used to seeing me working normally would say; oh com'on, cut the crap. But you see - I know my body better than you guys...)

Pity, I was planning to go shopping and do the thorough cleaning today, but I would rather trust my hunch and have a short granny nap until I feel better.

A little concern.

When I was eating my lunch, I tasted something funny in it.
It was not coming from the curry I cooked last night, but from the tupperware it was packed in.

What I smelt and tasted was dish detergent. Yuk.

Believe me, I rinsed it off really well. Like most women, I'm almost pathologically particular about the smell of the dishes after washing.
These days I mostly use the green olive oil soap to do the dishes but occasionally use dish washing liquid because I have to use it up.

Anyway, the point I want to make is, it could be possible that the residue or smell permeates into those plastic tupperwares. I'd never noticed that with other materials. It's only with plastic so far, but still it's dangerous isn't it?

You'd never know what sort of harmful chemicals are in those detergents, and if it leaves that sickening aftertaste in your mouth, it couldn't be good for us.

It's like using chemical insecticides in your house, or those room deodorants using artificial fragrance. Sure, I could be over-fastidious, but wouldn't you like to know what danger you're exposed to, wouldn't you?
It's about awareness, being given correct information, then we can make our own judgment.

Whatever the ingredients are, must be relatively harmless to 99% of people, but there are still 1% who are allergic or sensitive to some of the ingredients.
I've had bad experience with skincare/haircare products, and even with generic medication. The ingredients printed on the labels appear to be the same as what I normally use and have no reaction from and yet, when I use those generic products my skin/sculp or body reacts against them...so what's the hidden difference? You'd have to wonder wouldn't you?

For the time being there's nothing I can do to change this unfortunate reality (that we are not 100% informed) but will have learn from bad experiences.

Size matters.

It was a bad idea to have stayed up late to read books. I fell a bit sick last night after the close call and went to bed immediately.
In a way my occasional close call (body jerk) acts like a reminder or a reality check. Thankfully, after a deep good night sleep my body is rejuvenated.

This morning I had to do some weeding, which I had been procrastinating because of the incessant rain. Actually I enjoyed it - it was a nice feeling to go outside and breathe in the fresh air, and do something productive.

It has been a while since I started daily pseudo-Latin dance. I took a tape measure out of the cabinet and went about measuring my current size.
My waist line decreased by 5cm (aprox. 2 inch) but still not as small as what it used to be in my 20s.

While my thigh was chunky back in those days, my waist line never went beyond 60cm (23.7 inch)...but now the best I can do is going down to 63cm. This I suspect, is because of the water retention problem (my tummy is a slightly bit flabby).
The good news is that the size of my thigh is, for the first time since my teenage years, marked under 50cm! When my waist size was 58cm (I was 17 at that time), my thigh was over 60cm...the nightmare it was.

Well, so it's not bad. Indeed, not bad at all, because it means I have more balanced posture now than ever.

There's one confession that I have to make. I had a bad carb craving last night and gobbled up an entire pack of rice crackers!.
Imagine my shock and mortification when I saw the empty pack of rice crackers...

That, definitely needs to stop.

Coming to Terms with Reality.

It was gone!...I mean the typewriter I wanted. There was the other one that's probably from the late 60s or possibly 70s...nothing really significant.
Looking at the bright side, it saved me from spending again, and prevented my house from getting 'over-crowded'...yeah, sure.

Anyway, let me change the topic.
Since Tuesday, I've been managing to NOT stay up late.
Usually if I start reading a book and cannot stop halfway through the story, but these past few days, I've been forcing myself to put a stop to it at a certain time.

'Discipline' is something that was missing in my life.

On one hand, I am super lazy, on the other hand, I can be obsessively hard-working or determined. There's nothing in the middle, it goes from one extreme to the other...for which I'm ashamed of myself.

This morning my boss asked me to take charge of the shop while he's out, to which I was cool, but in the afternoon he told me to take some break...because I was working compulsively.
 
What was I trying to prove?
It makes me feel good to know that I can do something well.
It sort of makes me feel proud when I could finish reading a book within one night.

I clearly see the pattern in it.
I am subconsciously trying to rewind my time...to when I wasn't epileptic, when I could read a book within a couple of hours...when I could do many things so effortlessly...
I lost all those abilities because of this damn condition.
I thought I accepted the inevitability and I wasn't.

Am I really aware how fool I am?
Who the hell am I kidding?
It's getting late.
You know what? It's the time to tell myself 'STOP'.

Night night everyone and sweet dreams. zzz

HPV virus

It's getting colder.
News is forecasting more cold days to come this week.
That could mean we're expecting more fog in the mornings.

We've had 2 foggy mornings so far where the fog didn't clear out til 10am.
Well, it's close to the end of June and I love foggy weather.
My husband loves cold weather as well.
I can't wait to take him to Hokkaido next time we go there for a visit.

Well, that is irrelevant to today's topic.
A few month ago, I had a wart on my finger for the first time in my life.
It began with an insect-bite like redness with the familier itch.
I rubbed on some ointment and wait it to go away. - It didn't.
Worse even, it started to grow bigger.
I finally went to the local GP and got it removed.
He said it was a common viral infection, but he didn't tell me the name of the virus.

Now I got another one on my middle finger.
So I thought I would do a little bit of research.
The name of the virus was HPV virus.

HPV virus? I had never heard of it before, I thought.
It is apparently a common virus that has nearly 200 types, among them there are types that are linked to prostate cancer and cervical cancer.
Indeed 95% of cervical cancer is caused by HPV viral infection.
And the chilling fact is, est. 75-80% of sexually active Americans will be infected with this virus in some stage of their life.
This is Australia and the rate might not be as high - but who knows?

The problem is many people are embarrassed to go to the doctor for HPV infection that the virus will be passed onto too many people.

Of course the type of HPV virus that infected my finger was different to the one mentioned above. But it made me aware of the danger that is hidden in everyday life.

I thought keeping clean was enough to protect myself from that kind of infection, but obviously it wasn't. I'll go to the doctor tomorrow morning to get it treated.
Plus I will make sure to wear gloves at work and use my own hankie from now on.

And I definitely will take pap smear test every 2 years.

P.S.
As a volunteer at an op-shop, I appreciate donations from so many people, but there are some people out there who don't wash clothes or put rubbish in the donation bins.
To people who donate: Make sure to wash/clean items before you donate.
To people who buy: Wash/clean every items you buy from op-shop.

My Pursuit of Lesel Olive Soap is Finally Over!!

Today was a late start. I slept in this morning as I stayed up late last night.

As promised yesterday, I got back to studying after writing that entry and did some housework afterwards. It's a nice feeling when you get something done, you see.

This afternoon, I studied about an hour and then went out. There were a few things I needed to do.
For a start, I went to the local general practitioner (often called GP for short) and made an appointment for friday.

Then I drop by the greek supermarket across the street to top up some agno olive oil soap bars that I've been buying for general use. They're not as good as the Lesel soap I got from Japan in April last year, but smelt the same and were mild enough for everywhere except my face (They are a bit harsher as they contain sodium chloride).

Since I used the Lesel soap, I'd been searching if I could get some in Australia, but I couldn't find any information whatsoever on the Internet.
There were some sold in USA, UK and Japan (Lesel soap is extremely popular among Japanese skincare freaks) but none of those online shops ship them to Australia.

With Lesel soap too hard to get, I resolved to try Itarian brand Olivella because users' reviews were positive - it contains no harsh chemicals but 100% virgin olive oil, no perfume. The price was quite expensive, but when we tried it the result was not too good.
I could use Lesel and Agno soaps for hair, face and all over my body, but not with this soap. It left my hair completely dried out and pimples started to show on my back.

So I finally decided to get my family to send some Lesel soaps from Japan.
- so I thought.

But, guess what?
To my great surprise, I found the familier package at the greek supermarket.
The soap bars looked and smelt like Lesel soaps.

The logo was different and logo that is engraved on the soap was in Greek.

I wasn't sure if it was Lesel soap, so I asked my friend who's married to a greek guy to help me read what's written in Greek.
It read 'LESEL'!

I was over the moon to discover that and bought 4 packs straight away.
When I got home I fell uncertain again, because the lady in the logo looked different from the one I got from Japan.




I went to LESEL website and relieved to find that label on the LESEL olive oil.

The price was $4.75 per pack of 4 bars (373 Japanese Yen).
That is less than half the price of the ones sold in Japan.

The shop owner told me that the importer is Greek, so he imports those manufactured for the domestic market in Greece.

 
If you are a fan of Lesel soap, I suggest you to check out your local greek stores to see if they stock any, because there's a chance that you might stumble on it like I did.

Flu remedies

I've been sickish over a week now, but today was the worst yet.
The sore throat, headache and nausea became really bad in the afternoon so I went off line and took it easy for a few hours.

When I was a kid, mum used to make a juice with grated apple and carrot to soothe my stomach. I had a sensitive stomack back then and I used to have acid reflux whenever I caught cold.

Eating fruit in the morning is always a good thing, she used to say.
And I still believe that...although these days I eat fruit any time of the day.

I also have my? recipe for flu remedy. Well, not precisely mine, as it's a recipe I pinched off the tea in supermarket. - and I do that too often. :P

It's just a hot drink with lemon juice, grated ginger and honey in it.
Why would I have to buy lemon-and-ginger tea when I have all the ingredient?
It's cheaper and seems to work better when I make it myself.

I'm drinking it right now - and loving it.
Probably I'll try my mum's recipe tomorrow morning. :)

An Electric Failure

I see myself typing something into the computer screen.
I’m already seeing the fog in my brain
It expands wider, thicker and slowly starts taking over my brain

There’s one or so percent of my brain that is hyperactive
While the dull pain in my temple gets heavier

Then I see the first flash of light,
My body jerks,
Oh shit.

I can’t stop.
As if I am dancing at a rave party,
Colourful lights sparkle and swivel,
Suck me into the chaos

Body moves more violently and I sense
It’s coming, it’s coming.
The strange sensation mingled with agitation
I’m falling, I’m falling.

Fire sparks,
Light explodes,
_ _ _ _ _ (black out)