A F##Ked up Life

It's half way through friday afternoon, and unlike normal people, i am starting to dread the upcoming 3-day weekend.
It feels like this big empty dark space is rapidly coming up to consume me.

No alcohol, no german, no energy: three interlinking, yet not really related factors.

I'm not fricking normal.

Consumptive Diaries Part 26: Orange

Been taking the new meds for a week.
And i am still feeling cautiously optimistic; I'm not feeling too tired (unlike the complete lethargy i had with the last drugs); my appetite is remaining OK; and i don't have any of the other potentially damaging side effects (there are a shit load of them).

I do, however, have orange pee.
Now you wouldn't think this would be particularly disturbing, and to be honest it isn't really.
But i still have random moments of confusion & surprise. I hope I'm not the only one who looks in the toilet after doing my business, but seeing orange pee for the first time is a shock.
About half an hour after taking my meds in the morning, my pee is BRIGHT orange (think fake orange squash a la tango or fanta). Then as the day goes on it fades.
But i keep forgetting about it; and have little stress moments & think to myself, "Crap, I'm not getting enough water..."

So, that is my little dilemma: how do i know if i have had enough water during the day if my pee is always brightly coloured? My solution is just to drink as much water as i can...





(seven and a half more weeks till i see the german...and counting...)

Consumptive Diaries Part 25: Cautious Optimism

Went to the hospital today, and it didn't have a truly awful experience (unlike my last 2 or 3 visits).
I actually feel cautiously optimistic after today's visit.

My liver has pretty much returned to normal. From a nasty score in the 200s last time, it's now in the mid-40s. He said it's still a tad high, but healthy enough to start TB meds again.
He also floated the option of not taking medication & just leaving it be. It's a low possibility that the latent TB will turn into active TB. Also, he told me that, in Britain, it's pretty normal TB to be left untreated. In Japan, however, the norm is to be treated for it. He asked me if i was planning to move back to Britain in the next year or so, because if so, I could skip treatment.
So, told him that i was planning to move to Germany in the next year. He said that he hadn't looked into TB treatment in Germany. But i was reassured by the fact that the doctor is making efforts to help me out & look at different options.

Anyway - as we both didn't know what Germany's attitude is about TB; and i don't want to run the risk of being thrown out of the country for being a dirty leprous TB sufferer, i have opted to try continuing treatment.
As the last drug (Isoniazid) wasn't agreeing with my liver, I'll be taking a different TB antibiotic (Rifampicin) for 4 months. This one also runs the risk of liver damage, but the really exciting thing is that certain bodily fluids (especially pee & tears) can turn bright orange....

Am not going to get to hopeful, because experience has proven that nothing goes the way you expect (especially with TB related stuff...) But i am allowing myself to be cautiously optimistic.

AND...the doctor said it would be OK to have a glass of beer everyday!! Woohoo! Party hearty Helen is back!

He's gone...

Cried at home.
Cried on the way to the airport.
Cried at the airport.
Tried to convince myself that 8 weeks isn't that long; still cried anyway.

Love you, German. And miss you like hell.

Consumptive Diaries Part 24: Screaming Bureaucracy

7:30pm; Friday night; at home

My phone rings & it's the space cadet lady from the Public Health Centre.
Now, i am glad about the financial support they are giving me towards my meds (25% of cost), but i wish they wouldn't feel obliged to make pointless phone calls to me.
This is a rough transcript of call:

Me: Hello?
S: Hello, this is Ms S from Nakahara Public Health Office. Is it OK to talk now?
Me: Yes.
S: We got a call from the hospital that you are off your medication.
Me: Yes, it was affecting my liver.
S: I see. Did you lose your appetite?
Me: Not really. I was just really really tired.
S: So, you lost your appetite?
Me: NO! I was just constantly tired. It was really hard to do everything i had to do, and i had no energy.
S: Oh. Could you take your medication everyday?
Me: Yes.
S: You didn't forget to take it?
Me: NO!
S: I see. When are you going back to the hospital?
Me: 21st October.
S: I see. And what medication will you be taking?
Me: I don't know; I haven't been to the hospital yet.
S: I see. Well, if your medication changes, you'll have to fill out the paperwork again.
Me: Again?!
S: Yes. Now, we're covering your medication, but only that medication. If your medication changes, we'll have to change the documentation.
Me: Oh...
S: The doctor should do all the paperwork & you just have to sign it. AND you don't even have to come to the Public Health Centre!
Me: Wow! How wonderful!
S: Do you have any other concerns?
Me: Yes. I am worried about the treatment. I am also concerned about how much of an effect this is having on my daily life. Also, i worried about the future; when will this end? I thought everything would be finished by the end of January, but now it looks like it'll go on for longer. And what happens if the next drug also hates my liver? What happens then?!
S: ... Oh. Well, talk to your doctor next time you meet him. And I will call again after your next visit. Thank you. Goodbye.
Me: ...

Am so fed up of people asking me how i feel & how are things because:
A) They don't really care about my response or
B) I end up spouting out a whole diatribe of frustration & stress, which makes my feel like a crazy woman.

Basically, i am tired, worried and really really want this all to be over. I am *so* done with TB.

And on a completely different note: 6 sleeps until The German leaves.

And in other news...

Was walking to the office this morning (as you do), taking my usual underground route under Meiji Dori, when i noticed something different.
First there was a bunch of mannequins modelling autumnal fashions.
Then, lining the walls of the underpass, were lots and lots of photos. All portraits of random people - or so i thought.
A nice lady came up to me & gave me a free pamphlet; apparently this is all part of 'Shibuya 100-', which consists of MOVIEXPHOTOXFASHIONXEXHIBITION.
The portraits are by 20 photographers and are of people in & around Shibuya. Was really interesting as each photographer had his/her own theme. One that especially made me smile was the portraits of Metro staff; all in their various uniforms.
If you have a chance, go have a look see. It's free & on until Monday 13th October.
The website is all in Japanese, but the map shows you where things are. It is worth it; and, did i mention it before, FREE!!!

And in more positive news, The German and i are going to Okinawa on Monday.
One of the things that has been keeping me positive in the last week or so is this website here.
See that beach? Well, I'll be on it on Monday afternoon. 31C and sunny. And it looks like there aren't any typhoons on the way. Yippee!!