Janka´s journey

This is Janka´s blog about travelling with Cystic Fibrosis.

Friday, March 31, 2006

Chilli in the eye


Yaaah... as you can tell from being slack on the posting..I'm having the time of my life here, guys!!!I dunno where to start - I'm enjoying the project, loving the kids, having a ball with the locals here and my health is just excellent!

Seriously, I only need one nebuliser in the morning, I get up at 6 am every day, do my nebs and go to Long Beach for a run from 7 to 8, then back to the hostel, shower, breakfast, chill...and then to work at 9.00 - great start, I feel incredible all day! I haven't been that healthy in a long time and I think that's what actually gets me out of bed that early. Plus, even though it 's not that hot anymore, the weather is still great so I watch the sunrise at half 6 (to all the germans: that is not 5.30, it's actually 6.30!!!) while I do my nebs and I'm ready to go to the beach.

I'm absolutely loving the work with the kids at the center and I'm quite surprised about that since I never wanted to work with disabled children. But seriously, they are absolutely great! Check the pics, Sesethu is my absolute favourite!The other volunteers, especially Mark and Cat (we work at the center together) are so cool to be around with! Mark just comes out with some hilarious shit half the time - his dry sense of humor is absolutely my cuppa tea..and Cat is just sweet as she is. Nah, really, we're a cool group and I'm glad Cat stays until the end of april and Mark isn't leaving until mid may.

Which leads me to the next thing: As most of you know, I was originally planning on doing this volunteering for 3 months, until mid april, then go to the UK and start a "real" job....I know, it sound silly so here it is: I've changed plans (you guys should be used to it by now, hehe) and extended my visa until the 3rd of July. So I'll be staying for a lil' while, just sorted a job out at this hostel where I can do shifts running this lodge for accomodation and food which is great cos that's basically my major expenses.Also, I might go on some "business" trips for chill'n'surf, like surf - and adventure trips and then write about it on the web page and sell it to the guests.Sounds great to me. plus, this place isn't too big so running it should be a piece of cake, really. See what 3 years of apprentice ship was for, eh?! hehe.

But enough about the future..what have I been doing?!

Ah..I went to a wedding!!!! Not only was it the FIRST wedding I'd ever been to...it was also a surfer beach wedding...which means basically: very laid back and totally unorganised - great! A friend of Lyndon got married to a girl from Botswana, they met in Mozambique and they're heading off to Zimbabwe (get it..?!) and we just met them at the Ledge (a surf spot near the hostel) so they just invited me along. So after I got a bit stressed about what to wear it turned out to be one of the best days I've had so far in South Africa. Everyone was so welcoming and nice, made me feel like I didn't belong anywhere else but that wedding. Great.

We also had a couple of days off from work so we decided to go on a road trip for a few days but because Mark endet up having a bad tooth ache we endet up staying at the hostel until our last day off. Screw it, we though, and still left for just one day. Was great, though. Ben (another surf traveler from Western Australia), Louise (volunteer), Cat, Mark and I headed up to Stelllenbosch which is a little university town along the wine route. Just cool to see, very European, though. And white. But there was a festival going on so Mark and I had an absolute ball playing the drums with a local guy...until the others were bored and made us go home...!

And then...Mark has discovered his cooking skills - which, I have to admit, are really great and also very convenient for me and Cat - since he cooks for all of us. But along with that comes his interest in trying new things...one of them being spices - or spicey flavours. So the other day he bought this huge bag of chilli peppers and added some of that to our chicken curry. Not only that we were all on fire after that - because I helped him cut the damn chilli and I somehow managed to rub my eye - man....has anyone of you ever had chilli in the eye..?! Dude, that's some serious pain! And it just doesn't stop burning, no matter I washed my eyes out with water! But yeah, it was all loads of fun and everyone else thought it was hilarious so we were the evening entertainment for the evening, trying to enjoy our chicken curry. Of course, we couldn't resist taking pictures of each other, red faces, watering eyes, runny noses...the works!

So yeah, I can't really think of anything else for now...check the pics, I've uploaded more, also some of the township where we're working..I know you guys have been waiting for that..:)

Thursday, March 16, 2006

A new start


Ok, ok....I guess it really is time for a new post. And I know at least Jelmer is gonna agree with me on that one..hehehe (gettin' a lil' impatient here dude, eh..?! :))

Anyways, guys..here are the latest news:

I endet up leaving the kibbutz, so now I'm staying at chill'n'surf, the backpackers we first got dropped off at when we arrived in Cape Town. It's located in Kommetjie, a small town (or village..?!) 40k from Cape Town right on the coast of the Atlantic Ocean.

why do I live there? Cos I've got a new project roght across the road in a black township called Masiphumemele (yeah, it took me a while until I could pronounce it correctly...). It's a township of informal settlements (I know you all want some pics but you're just gonna have to be patient on that one...) and I work with some other volunteers in a day care center for disabled children. It's really great work cos every volunteer is assigned to two kids so you feel really responsible for their improvement. Nomally about 7 kids get brought in by their parents at 9 am so we have breakfast with them, play games or try to teach them words, letters and numbers. On Tuesday and Thursday Nicki, a german physio comes in and does group activities and also shows us some stuff we can do with the kids.
"My" kids are Philasande, a 2 year old boy but he's more like a baby cos he's got severe epilepsy so he can't move on his own. He still gets fed with the bottle but he's really slow when he drinks and because his mum got annoyed she cut a hole in the nipple of the bottle which means he almost chokes when he drinks. So now he's terrified when anything goes near his mouth nd starts to gag. He's also really stressed and gets muscular contractions so his body is really tense and I try to relax him a bit. I've made him a hammok because he has a round back and this should improve things. They also put him in bed a lot, always on his back and because he's quite chesty, he can't hardly breathe so I put him on his belly and do physio with him, similar to what I do (or should do..!) to keep the thorax flexible. Phila has gotten so much better in the last week, it's unbelivable! I think it's just that no one ever wanted to hold him cos he cries a lot and he's so tiny but that little thing surely can raise hell! And now he's hardly in bed anymore, so gets loads of attention and I don't let him cry for hours either. Yeah, anyways, with this project you feel like you're actually doing something and after a day with Phila I'm actually quite exhausted.
My other kid is Paul,7, he suffered from meningitis and has problems moving his left side so I do some physio with him. Unfortunately, his mom hardly brings him in the center, though, so I haven't been doing all that much work with him.

So life in the hostel with the other volunteers is great. Because we're all on different project there's a great deal of exchange experiences which is cool. Also, I've rented a car again (you really can't get anywhere or always have to try to get a lift off someone which is a pain in the arse if I wanna go for a run at the beach. And hitch-hiking is not really safe.) so I get around again. I really think I've made the right decision coming here. So much better!

And, because this is a backpackers we get infos about all the stuff that you can do around here! So Liz, Cat (two other volunteers) and I went canyoning yesterday! And oh..my..god...I was dead afterwards but it was one of the best days of my life, really!
First, I was thrilled how well things were with my lungs, I was coughing a bit but not at all uncontrolled. And I mean it was a hectic day, I got up at 3.45 am to do my nebs and stuff cos the guys from Frixon Adventures picked us up at 6 am! 3 Hour drive out to the mountains and after a lovely breakfast we took off. Hicked a few K's to the first canyon and man, I was a bit scared going over the edge the first time. Also, we abseiled down waterfalls which made the whole thing a bit tricky and, needless to say, I was soaked after my first abseil. So we hiked and abseiled more until 5 pm and we all slept on the drive back to the hostel.
So yeah, today my muscles are sore as hell and I have problems sitting down and getting up. But hell, it's definitely worth it!!!

So to sum it up: Change of location was definitely a wise thing to do and yeah, thanks so much for all the encouraging comments and emails I got regarding leaving the kibbutz. I really wasn't sure whether I was doing the right thing or not but reading all the mail was really really good!
The hostel rocks and yeah, I realise this huge difference between coloured and white South Africa. It's totally weird to go from one world into the other and I notice how much easier it is here for me to fit in. But I think I've learned a lot living in the coloured community, I realise it when I work in Masiphumelele. It's not hard to adapt there for me at all. But I appreciate the fact that I go there to work, but when I come home to chill'n'surf, I know the rules of the "society" there, I know what to say and how I come across with certain things. I know how to take people and I know how they take me. It's easier and more relaxed.
Great to do another project and to see that volunteering not always means frustration. So yeah, I really like working with the kids, they are great!

And also (because I know there are a few mum's reading this - inclunding mine...) this place is a lot safer that the Kibbutz, simply because we work but don't live in a township. We did have some riots here the other night with burning tyres and stuff cos we just had elections and the housing situations is a disaster but that's peanunts compared to the shootings at the kibbutz area. So yeah, all of you who tend to worry a little bit to0 much....chill out, I'll never be completely safe but we're going down on the risk scale. A tiny bit. hehe.

But I think that's all the news for now...added some more pics though, so check them out - especially from the canyoning!!!

Thursday, March 02, 2006

Decisions, decisions......



well, here I am and there's been so much going on but I'll try to keep it as short as possible just in case you get bored.

So since I got this rented car I have been exercising daily, the only thing I can do here is swimming but I do that for an hour every day. Go me.

On Thurday I headed off to Cape Town to see the CF specialist PW (Professor Wilcox) at the Groote Schuur Hospital. Thanks to Karin and to the CF Associasion here, it was no problem getting a "clinic" (that's what they call a check-up) so at noon sharp I stood outside the hospital's gate. I was kinda glad Doreen had come with me cos the firts thing I saw at the door was a huge metal detector. I mean, I have been to a few hospitals in my life, none of them had a bloody metal detector at the entrance. The Security guys were really friendly though and they explained to us that the reason they have this thing is because often there will be gang fights and shootings nearby, someone gets rushed to the hospital but they'll have to check for weapons. Aha. makes sense.
Anyways, the hospital was quite old school-looking, dark hallways and stuff...Doreen said it reminded her of East Germany - before the wall came down! hehe....
At the CF section we were greated by Ruth, another Lady from the CF Association who had just come by to say hello to me. I also met Shelly, a CF adult who was going for a clinic. They do have a funny system there, though. I mean, in Europe we are almost paranoid about separating CFers who have different germs to avoid cross-infection. That's one reason why I don't do CF camps a lot, maybe every 3-4 years. In Germany, a CFer with pseudomonas would never get an appointment the same day as a CFer without that germ, and even in the CF camps in Belgium they do their nebulisers and drainage and stuff in separate rooms.
Here, they have clinics twice a months and who ever shows up shows up. No appointment needed and you don't even call and tell them you're coming. Shelly showed me some of the hospital later and I saw that on one side of the hall they have rooms but on the other side, the hallway is just wider and there are like 10-15 beds with patients, so they are basically staying in the hall. Shelly said when you do IV's in the hospital (and they normally do - since the at-home-version is too expensive) they don't want you to leave the hospital at all - which would be my worst nightmare. Cos when you have your IV you're not really sick, eh?! You're usually just bored to death. Any ways, she said they even mix CFers and TB's (Tuberculosis patients) and all of a sudden I didn't feel so comfortable walking around the halls anymore.....
But PW and Richard (a senior registar - whatever that means...I just got it from his name tag...) were really nice and I had a good chat to them. They couldn't believe I'm taking all this "fancy" medication, Tobramycin for example, an antibiotic I take on a daily basis is not available here because it costs too much. They hardly prescribe antibiotics here anyways for that same reason. So they try to work with macrolides and just cheap stuff they can afford. The patients have to come in once a month to get a check-up and their medicine. Some have health insurance, like medical aid but Shelly said she's had problems with them paying her med bills.
So yeah, because in my country we have quite a good health system (which is about to change, though) and my parents pay for my meds I have never really had to worry about how expensive my meds are. They were gonna have a test run for tobramycin here in SA but the parents of CFers refused, saying that if Tobi really worked for their kids they couldn't just tell them that they can't afford it. Stuff like that really gets to me cos we never had discussions like that at home. Whatever meds I needed I got.
So yeah, I had a lung function done (with a very antique-looking thing...but it was all for free so I won't bitch..hehe) and that gets me to the next thing I need to tell ya about...

...results were not too great, I'm about down to 50% (not surprising, though...I have been sick since a few days after I got to the Kibbutz, I'm around people who catch the flu easily due to malnutrition, I have just started the exercise and the heat strokes don't make things better). The thing is, I went for runs at the beach on Fri, Sat and Sun and while Friday I could only run for 10 mins, on Sun I was doing 30 mins easily and (listen Doc: this is for you...my pulse rate was even in the supposed area - between 100 and 130!!!). I also felt 100% better, I didn't cough at night or in the mornings before doing the nebuliser when I sayed in Kommetjie (this is where the chill'n'surf backpackers is and my accomodation when I go to Cape Town) when in Worcester I'm coughing quite a lot.
I've asked the Cf people what they thought of it and Karin said maybe it's the gas and parrafin stoves they're using. Hell, I dunno I just know that my lungs prefer to be near the sea and actually I have to admit that I felt the same way in Australia. So no news, really.

So what to do?
Well, I had been thinking about it all weekend and finally came to the conclusion that maybe (for the first time in my life) I should put the CF and my health first and leave the Kibbutz. I felt so bad about it though, cos I thought I was gonna do this for three months and some of my friends and family are saying that I should start sticking to something rather than doing all kinds off different things all the time...and maybe they have a point. I mean, commiting to something for 3 months isn't really that long - but here I am, leaving again, after only what...six weeks?!
So yeah, I called my organisation to ask for a different project, one that's on the coast and they have a couple in Kommetjie (this is where chill'n' surf backpackers is). There's an animal shelter and a center for children with special needs. On Friday we're all going back to the chill'n'surf (time is up for the girls and we're going to have a going-away-party for them) and I think I might check the projects out, see which one I can get into. I was really glad that Ali, my In-land coordinator was so great, she didn't question my reason for changing placements once after I told her the whole story.

Anyways, back to the story...in case there was one...
So after the hospital Shelly was nice enough to accompany me to Fish Hoek, a small town outside of Cape Town (as you all can imagine - I would have never found the way on my own...) where Karin, the chairman of the Cf association of Cape Town lives.
So I (finally, after only talking on the phone all the time) I met her, as well as her daughter Barbara, she's my age and got a son named Darryl. They all live with Karin but it's not too bad because they've got a huge house. Upstairs in a separate apartment live Stephen, Karins 37-year old son who's got Cf and Jane, his wife.
Such lovely people and after I shared some travel/CF stories they made me stay for dinner which was delicious. Of course, they had a laugh at me for the little amount of food I ate (for a CFer, though!)...:)

So I spent basically the weekend with them, went to the beach with Barbara and Darryl, met her boyfreind Andrew and some other friends and together we convinced Karin to do some baby sitting so we could all go out for drinks....:)

Ok, so I'm not sure if that's all I wanted to write. see, this post is a bit tricky, I've started writing it on the 2nd of march but today, when I actually publish the post, is already the 7th and I'm not sure which date it will show on the blog. Yeah, I know....you're wondering why I take 5 days to finish a bloody entry...well, lemme tell ya. We've had power cuts big time, every day we only had electricity for a few hours. That means no cuppa tea for the brit girls and no internet for me! But now I'm at the c&s backpackers where there aren't so many power cuts (cos this is the white area) plus we've got internet here. So yeah, you might just get a short up-date post soon.....maybe.

Anyways, It's almost 6 am and I've been sitting on this computer for an hour so time to get some breakfast, nebs and all this morning-stuff (shower, cleaning teeth, getting dressed, etc.) and go to work.

Later.