Phuket.... lets go.

My professional background is Luxury hotel management for many years, and have recently venture into Hotel Software consultancy… and with that it means I’ve spent a lot of time in Hotels and Hotel rooms…

Having said that however, it was still nice to get invited on a small trip to Phuket with my Buddy Huai Bin.

Himself and 2 other bloggers were invited to experience the newly refurbished and re-launched Outrigger - Laguna Beach Resort in Phuket. And I was allowed to come along for the ride.

Having sort of Lived “out of Suitcase” for most of the previous year whilst working and settling in Australia and Malaysia it was nice chance to have a break and actually have space in my Hotel room….(I had in all honesty already had a nice little 3 day break in Bali in December with a good friend, but this wee trip to Phuket was free d-:  )

When invited to go on these trips you are kind of expected to review the place you stay at as well, (when I was in Hotel management myself, we used to have bloggers and Journo’s over frequently in the hope they would score us favourably… and since I only worked in excellent hotels I can tell you that Favourable reviews were always on the agenda.. ;-)  ) Luckily I wasn’t asked to participate in reviewing, I was just enjoying the stay … IT was up to my travel companions to blog about our stay… and here and here are Huai Bin’s review…

 At the same time, I did think I wouldn’t be a wrong thing to put my thoughts on virtual paper so to say.. .

Initially I thought I had the perfect angle… “The Vision challenged experience” see how things go when you sometimes have some sight issues… how do hotels accommodate for that etc?… then I thought about it and laughed out loud….

Why would I do that… ? So far, my entries have been about , getting on with it, not letting limitations get the best of you… so would reviewing a hotel on how it handles the “less abled ones” be a thing to do in my case? Nah… never….

And rest assured… the hotel didn’t limit me in anyway… all was nice and even, and smooth, no potholes or level floor changes I could trip over… the only thing that caused me grieve was some sand from the beach (when I was on the beach) that blew into my eye and started irritating in between my contacts and I had to take them out… wow… nothing to do with the hotel anyways.. More with my own stupidity for not wearing shades (-:

So then what? Judge it on my professional experiences? Yeh, why not? …well…. I got to a conclusion on that as well….. the NOT that is…. Its work!!!!!! I’ve spent the bulk of my living/working hours since 1995 inside a hotel in one way or another…. So when I’m at a nice relaxing resort… do I want to start taking notes? Nah… not really… .. (or at least, not for now anyway)

I can tell you it was nice and relaxing though… that I had some great food, one of the longest breakfasts I’ve had for a long long long time, (and that says a lot for someone that doesn’t really do breakfast in the first place)  I can tell you that the Night market in Phuket was amaaaaaaazing, and that I had a great Thai massage in a rickety old Beach Bar from a lovely little lady that tortured me and my feet…. But if you really want a review…. Read the ones Huai Bin did…

To Blog or not to Blog

I was invited by my friend Haui Bin to join him on a visit to Phuket, he is a very active blogger with a large following in Asia.

I had met him via Suanie from Suanie.net, who previously had been introducing me to the Blogging culture here in Malaysia, she as well has a large following and on these blogs they write about food and products, general aspects of their daily going’s on etc… and as such they get invites to newly opened or re-launched bars and or restaurants, product launches and more… this also includes Hotels and Resorts on occasions and whereas I had joined Suanie on a Restaurant re-launch tasting and event once, this time Huai Bin had a spare space for someone to join on a trip to Phuket and I was the lucky one. (See my next post on that specific trip itself….)

These couple of outings have been a bit of an eye-opener for me.

(yep, given that this blog is mostly about my eye –sight.. this is a pun indeed… a bad one at that, but still…)

Blogging encapsulates soo much its an interesting thing to observe.

So many people have different reasons and different approaches.

I have friends that blog to just get “things out of their system”

I have friends that use it to chronicle travels

I read blogs on “Lifehacks” TechieStuff” “Android Phones” and many other stuff.. for either info or an opinion on a subject I guess..

I started writing my blog because I was initially frustrated about not being able to find out much info about living and experiencing Keratoconus… in the hope that by writing my frustrations and experiences down, I might be able to make someone else’s situation easier to navigate…or alternatively for them to use it as a tool to make others understand what it is we are going experiening, and that its not just a matter of getting a new prescription for your glasses…

(I know for instance that my circle of friends and family have approached me with different responses from:

 “Wow….. that made me cry” and “Man, I never realised it was this bad” to compliments about my style of telling my story.)

In all honesty, whilst hoping it might help others, I also have a very selfish point here and that is….to get my frustrations “out of my system” as well of course..

  

Then again, when I first signed up for this blog in 2005 it wasn’t to do with any of my eye problems( i didn't have any then), it was a vain and failed attempt to write “HotelBabylon Style “ about my experiences in the luxury hotel industry where at that stage I had been working for about 10yrs.

It turned out that at that time in my life that definitely wasn't the thing for me to write about, and although currently I can still come up with plenty of stories, and maybe one day might just do so, at that stage I gave up quickly and retired the blog so to say.

It wasn't until a friend of mine pointed out that maybe blogging about my Keratoconus experiences wouldn’t be a bad thing I decided to see if the bloglink actually still worked after all those years, and as we know, nothing disappears on the internet, so here I was able to re-instated the blog as such, gave it a bit of a face-lift, and started writing..

So far its been a good (and at times cathartic) experience, and although I do have moments where I can’t think of what to write, and admittedly do run out of things to write about KC wise,  then again, when there is something to tell, I always will…

That’s why my experiences with the bloggers I mentioned at the beginning of this article, were so interesting…

For instance, initially I was kind of bemused by the taking of pictures before eating a dish from many different angles to just make sure it looks good on the blog, to taking photos of the whole hotel room and hotel and surrounding area’s from different angles, once again, to make it look great for the blog…

And props to them for having made this a semi source of income, as I saw for instance that during our trip to Phuket, it wasn't all just fun for Huai Bin, it did involve quite a bit of time spent on updating his Blog and his Twitter, Facebook, Instagram and Foursquare feeds…

So, although it might all look like a Jolly.. these guys take it serious and are indeed providing a professional service in way to inform us, the public, of whats out there…

As for all the picture taking that initially bemused me….I started thinking….. its exactly what we do nowadays already when we go on a trip or evening out… taking pictures of out meals, or the place we stay at anyway..

So maybe, when I don’t have anything interesting to say about my adventures in Keratoconus land, I could write about other experiences… or maybe not…. Maybe I should just give it a go and see what happens…in any case, given my vision, my pictures might end up a bit more blurry then theirs..

Good Coffee: Cheaper than prozac

As a Dutchman i've grown up on Coffee around me a lot....and as the title suggests, its a good tool to keep sane... (-:

Here in Malaysia I went straight for the Starbucks, as that's the easy option I guess.

However, I quickly adjusted to the local variation  Kopi ((o) ais ) but 2 of my friends on separate occasions have introduced me to a small coffee chain in KL that's called Artisan Roast
(with what i just found out a link to a coffee place in the UK aswell..
UPDATE... Its actually in my Beloved Edinburgh, right near where i used to live in Bruntsfield... http://www.artisanroast.co.uk/ check em out)

In any case... they have 2 great relaxing places in KL one in a busy mall and one in a more urbanised area ...

I have on a couple of occasions really enjoyed their coffees and latte's and even what I reckon is one of the best cheesecakes i've ever had in my life.....

and suddenly I discovered the other day that they have just opened a place next to the office where i'm currently based. so I couldn't resist and got myself this...

Zongzi / Bak Chang

The other day I was handed a little leaf wrapped parcel by a friend of mine, saying: “here, you’ll like this…. “

And me (not owning a verbal filter sometimes…..) saying, hmmm, thanks, but eh its evening, why are you handing me breakfast?

(I was referring to Nasi Lemak a dish wrapped in pandang leaves and mainly taken for breakfast in Malaysia)

My friend laughed and said “noooooooo its not that… its something else completely…it’s a very traditional Chinese dish…”

“Its something called BakChang”  and she proceeded to tell me the story of Qu Yuan a famous poet during the Chu Dynasty as legend goes (according to various sources on the interweb and of course my friend who gave me one of these)

The Bak Chang is a traditional Chinese rice dumpling usually available around the time of Dragon Boat Festival.

Like many Chinese festivals and their associated foodie traditions, there is also a legend surrounding the origin of this yummy food.

The story goes that Qu Yuan tried to warn the King and his fellow countrymen of the expansion of the neighbouring Qin kingdom, with little success.

When the capital of the Chu kingdom fell to a Qin general, the patriotic Qu Yuan was supposedly so overcome with grief that he drowned himself in the Miluo River. The Chu people threw packets of rice  (the Bak Chang ) in to the river  to keep the fish from feeding on the poet’s body. (i have also heard a version where it was meant for feeding him in the afterlife..)

Bak Zhang or Zhongzi as they are known today, are made with glutinous rice with a variety of filling, then wrapped in bamboo leaves, bound and tied together in a bundle and consumed once a year on the fifth day of the fifth month of the Chinese lunar calendar.

Although I was out by the exact day I was still in on the exact week, and went to try this last night…

As you can see it looks kinda lush, and that it was…

Quite filling.... that’s the glutinous rice itself I guess.. but very flavoursome and tasty….

Bring on next year

Take a hike….

Over the last year I’ve been trying to push myself out of my comfort zone on occasions, determined not to let me vision issues get me down... climbing Batu Caves in Kuala Lumpur… going for a Swim in a rocky Waterfall area, and this weekend I added another something…

I went up Bukit Saga , a trekking spot near Kuala Lumpur.. 

Purely to see if I could physically and mentally do it…, it wasn't very high, but still I wanted to see if I could do something like this and if it was something I could or should continue doing…….

I was kind of inspired by a  friend of mine who recently climbed Mount Kinabalu, a mountain on the Borneo side of Malaysia and she provided me with some amazing pictures and stories that got me kinda hooked and intrigued now…  knowing that that probably wasn't something I could ever do, It did make me think if hiking itself was possible…

Was it possible?

Well, see below…

 The “going-up” bit was a wake-up call as towards my overall fitness….  I was with someone from work and 2 of her friends they were all my senior in years, they were regular gym goers, and runners etc, (they even had hiked and climbed before, including Mount Kinabalu) … in other words …. healthy…

Me? Well, I’m a many things, but not that… I have indeed shifted approx. 35kg since having figured out that I had KC, and that it was manageable and that I can live with it very well, but that was without being fit, or making an efforts as such towards the weight loss….. and for sure I haven’t started any proper sports as such, apart from a small attempt at rowing last year in the UK before moving to the Asia Pacific region and a little bit of swimming and a tiny bit of Yoga…

Someday soon I will have to start some regular exercise for sure , but just now, I need to deal with the “storm” in my head that has been this roller coaster ride that my life has been since having had my Contacts fitted and ive been able to pick up my life again…

So halfway up the hill, my body was sending me shocked message as to what the hell I was suddenly doing, and yeh, it hit a stage where I did have to sit down for a while and recover… but so far, no visions issues, just climb and use my hands to gauge where i'm going…. All good…

By the time we finally were on top of the hill, and were joyous to find we got there, we discovered that another hour further we would be able to reach some great waterfalls…. However we decided to set that task for next time, as it would be a good motivator to come back soon….

The bit going down was next… and eh.. .that was eh fun….

As i've explained before with a lot of the people that have KC there is a common thing where we don’t see depth very well, Stairs and steps, and even pavement curbs become a tricky thing to navigate, as it will either become in our perspective a ramp or even as bad as a massive ski slope.. depending where you are ofcourse… in any case, a tricky thing to navigate, so just imagine how this would look to us…..

Scary!!!!!!

But that’s why I was here, to conquer that fear and move on and push beyond my comfort zone….

One thing to highlight aswell is that my travel companions all knew the score with me on this, so they were very patience and took their time when needed, pointing out where to be extra careful etc…

In any case, here I found my overall fitness not to be lacking whatsoever, it was just a very tough mental thing, where things came down to a lot of, what If I go right, or left, what about this drop, would that be as high as I think it is… but by anticipating and gauging these uneven grounds with a solid hiking cane it became a very intense but pleasurable thing to do… 

I definitely want to come back and maybe even aim for something more extreme, like the previously mentioned Mount Kinabalu…

(let’s see if my friend is up for taking that challenge with me next year, or if she (and others) will talk me out of it…. )

Maybe, just maybe....

Sweating like mad, but happy as a child..... (-:

A bit of Fun

This is quite possibly the sole reason i'm happy i can see better nowadays 

Time Flies

So it’s been a year since stepping out of the plane in Singapore to start my Time in the Asia Pacific region…. And it’s now just  a bit over a year since returning back to work after a rather traumatic couple of months just before that...

So where do I stand now?

It’s been a year of ups and down, (sometimes even literally.. )on a Physical (ocular) level, Mental level, an Emotional level and many other levels, all in all its been a year of personal growth...

Work brought me here, and that’s been a hell of a ride in itself, but I think mostly I ended up getting re-acquainted with myself again, sometimes that wasn’t nice, sometimes it was great....

I have noticed that I have become a more emotional person since my "Blurry" days, maybe from being isolated and spending time with myself a bit too much, maybe for other reasons. But, whatever the reason is….I don’t see it necessarily as a bad thing, but i need to learn to guide and contain it a bit better i think..

but im working on that...look up the Chimp Paradox, it makes sense..

Anyway, going back to where i stand now?

Well, work is going fairly good, It has its up and downs as well of course, but its going...

On a personal level, I have met some great people that have flowed in and out of my life, just like that goes, and I hope that I can keep calling some of them my friend for a long time to come.

I have had big time support from old friends and family along the way aswell, sometimes mixed with causing them concern, and stress and maybe sometimes even letting them and myself down, but their continued support has certainly made these last 12months easier to navigate.

But.. but what about my eyes?

My Eyes, seem to have stabilised... don’t get me wrong, I have bad days, where i wake up and just know there’s no use of getting up in the first place, and just rest my eyes.. In fact, it happened last weekend.. But overall, they have become manageable

As I documented, I had to go through a week of "blindness" to

give my eyes a rest for some rigorous testing, and the results from that initially said I should be looking at Surgery, two different surgeries as such.... cross-linking and keraring, (see previous post on these procedures) these procedures would cost me a quite a bit to do, and would not fix the issue, they would just slow down the deterioration of the cornea.. Which basically means, it will get worse much slower..... and although I’m not dismissive of those procedures, I have done some online research and spoken to some optometry professional I have come across via the Keratoconus GB Facebook page, and have found that as I,

A, have had KC happening to me at a later stage in live than the average patient and

B. I’m hitting 40 in a couple of years,

it’s not the most effective procedure in the first place, as the deterioration is slowing down and stabilizing around this age, granted I got it quite late, but the big possibility is that I won’t deteriorate fast, and if it does there’s always the future …..

So for now its stick with another set of RGP’s……

That’s sort of where im standing now I guess…

Where am going? Will see…I hope more pushing outside of my comfort zone

Got some hiking lined up next weekend, kinda scary, very scary actually, but I need to keep pushing… I just need to 

and if all fail, maybe , just maybe this is the future

http://mashable.com/2013/06/07/contact-lens-google-glass/

Huffington Post Hangout interview on Keratocnus

Just in case you have a spare 15/20 minutes, watch this video to get an even clearer picture of what KC is about...

Blinded by the Light

Z S H and ehhhh C?

I had successfully remembered the sequence on the Snellen chart to get away with not really seeing a bloody thing….

Well, maybe I should have , but obviously I didn’t… that would have defeating the purpose of sitting at home without vision for a more then 10day  period… it was tempting though, as it can make you feel soooo small not being able to read out what’s right in front of you.

If you already struggle with reading when testing both eyes as a pair,  just testing them individually one by one, to sort of establish the digression in the eye since last time…. (my right eye is very close to being officially classed as blind)  can be soo disheartening and discouraging….

(I’ve also started to notice a pattern, where whoever will be doing the testing, will never say if you had it right or wrong… just “Well done”  or “Thanks” to whatever you say.. I could be making up letters that don’t exists, and id still get a “well done” I think … any thoughts of other on that be very very welcome  J )

But lets get back to the story at hand…. As described in one of the previous post I had been home for a short period to not wear my contacts to give my eyes rest to do a proper follow up test a year after diagnosis.

I had been able to get my files mailed over from the UK, for the doctors here to compare the results to.. .but to get the latest situation on paper it involved a full day of test, which I wish I had written down so I can sort of explain what happened.. .in any case, it involved a bout 4/5 computerised tests and the regular tests you might expect from an eye exam…

I had an appointment first thing in the morning on a Monday morning and a friend had taken pitty on me and figured it be better I wasn’t trying to get there on my own whilst being in my blurry bubble … so  there we were sitting in the fully brightly lit waiting room, wondering why, if this was an eye hospital with supposedly a lot of visitors in much worse conditions then me ,  they didn’t have a speaking elevator announcing the floors of where you arrived at…

Apart from that, no issues.. we sat and waited, and after a while I recall  seeing the Doc that looked after me on my last visit, but then again, I saw not much, so the fact he sort of waived gave it away I guess….

Eventually the tests started, and I was introduced to another specialist who took me through to most of the tests, which involved a lot of bright light shining into my eyes and face, reading out those pesky letters, little blows of air into my eyes, more lights, some weird looking glasses on my head, some more lights , the measuring of the movement of my eyes… as we discovered I had another fun thing… not just having trouble with my cornea, but It seemed I had trouble keeping my eyes still , something that made the testing slightly more difficult on occasions, but also probably one of the reasons why initially  I got misdiagnosed all those months back… 

It emerged I had something called  cyclotension nystagmus..(try that with scrabble) nothing major, as said it involves the control of movement of the eye… but something that can be handled much easier when you’re a kid then when you’re in your late thirties..

In any case, its something that’s part of my issues, it doesn't make it worse or less worse, its there and there’s not much else that can be done.

It was a full on couple of hours and I noticed my friend was slightly intrigued, worried and slightly shocked to what was going on, as she was quite aware of my issues, but being there and seeing the tests happening and realising how bad my eyes really are, made it in her own words a bit of an eye opener.. .(Pun intended??)

This came more apparent when the lady that been doing all the testing talked me through some of the options that are available to manage my condition better… currently I’m using RGP lenses, and am planning on using them for quite another while although it sort of means getting a new set every 9 to 12 months as my eye will get worse over that period, at the other side of the spectrum there is Corneal Transplants, which I hope to be far away from, but never say never…

What she did however was  re-educated me on the Crosslinking and Keraring option, two fairly new and not everywhere accepted ways of slowing down deterioration off the cornea’s…. not as in a , you need to do this now way, but a first let’s see what the tests bring back and then maybe over time this might become a solution for you if things get too bad…

A slight “wake up” call, nonetheless… plus a couple of bruises of where my friend was pinching my leg whilst watching the accompanying video’s… :-)

Corneal Crosslinking...

Keraring Implants

In the end it was quite a tiring day, both mentally and physically, but it’s a good start toward managing my condition even better, so well worth it, this feeling itself was boosted aswell by the fact that I understood from Suzanne the specialist that was doing most of tests , that she was kinda impressed with  the way I moved around despite my restricted vision and the knowledge I seemed to have on the subject of KC already, although she made also very clear that I might need to take better care of the way I take care of my contacts and maybe clean my hands a bit better whilst placing them in and out of my eyes…. Oh well, cant be perfect I guess…. J

Al to do now is wait for the results and get this managing started…

Hero's

Someone asked me the other day about hero's and if I had any, and I guess I got a couple ....

This man here, Michael J. Fox, however ranks highly .... after listening to his biography whilst i was still in the first months of my 'fun period' about how he dealt with being played the Parkinson's card at such a young age and subsequently has dedicated his life to the cause, whilst publicly still being cheery and full of humour and still popping up now and then as a great actor ... it helped me a lot getting to grips with how things just go in live, and to just find your way around it ...and that's it for sloppy and reflective Sunday peeps ......have a good day all

Check out his book Lucky Man.... its worth a read.

Solitary Confinement...

So, I Just returned back to work from a duration of 10 days without my RGPs, to give my eyes "rest" before starting with a series of tests yesterday...(my next post)

Firstly, I have to admit, I was more “lost” than I had anticipated, I literally ended up locked up in my flat with all curtains drawn for the duration of that 10 days as my eyes ended up being extremely sensitive to light now they were “relaxing”

I had stocked up on Podcast and Audiobooks and had present some Radio stations to stream on my Mobile, as Watching TV or reading a physical book weren’t really going too be an option…. So My mobile and I were going to be best buds for the next 10 days for sure…

It did mean however, no real options to keep “in the loop” via all the known social networks as I could not read it, the only thing I managed over that period was a little bit of Skype calls and a bit of “Whatsapp” via some speech recognition and voice software on my hpone. I was able to get this sort of to work,(although I’m sure this could be smoother and im going to start looking into some more efficient ways of doing this for when im having a “bad eye day” so to say) and therefor had some belters off spelling and “translating mistakes” when I looked back over the chats ive had.. So It was kind of an Internet detox at the same time I guess….

The first day I just settled in, just lying in bed in a very darkened down bedroom, mostly listening to some stand-up and a James Patterson book and still full off spirit, until suddenly I got the fright of my life….. whilst a descriptive scene was describing a gun fight it suddenly got very real indeed, I could have sworn I was hearing gunfire myself….. Massively load bangs started rumbling through the apartment complex/ local area… WTF? Ah, ok….

"Gong Xi Fa Cai – Happy Chinese New Year" – The Year of the Snake had started…

As I was invited to a celebration of this by a friend of mine the next day, I figured it wasn’t until the next evening, well, these bangs made sure ill never remember the start of CNY ever again for sure, couldnt see the fireworks, but surely heard them.

As said, I was invited by a friend of mine to come and join the celebrations the following day, and was picked up by a mutual friend of ours who patiently walked with me whilst I was navigating my way to and into her car and then into the house where the party was…. All whilst using my trusted cane…

I had been looking forward to this, being introduced to traditions and having new experiences… as apparently traditional there is quite a bit of gambling going on during these days, I counted myself kucky I actually couldn’t see a thing, as in that way I couldn’t participate or being tempted into participating into a game I would know in the first place and therefor losing all my allocated dosh… there are bonuses sometimes I guess.. (-:

Unfortunately apart from eating some really nice food, the only tradition I experienced was the tradition of “the red envelopes”
Traditionally these are envelopes filled with some money and are typically given by the married to the unmarried…. And as Im not married or have ever been, (although based on this fun surprise i might just stay unmarried for another while d-: )I suddenly was handed these envelopes aswell, and I wasn’t even family… initially slightly embarrassed, but after being reassured I shouldn't be, I accepted the envelopes… unfortunately not too long after that I already had to go home again, as the whole experience had been pretty full on…. the brightness of the daylight was really playing havoc with my eyes, and was creating a massive headache aswell… .something I hadn’t anticipated so intense and sort of set the tone for the rest of the week…

I had figured I could on occasion go to the pool at my apartment complex and at least sit there for a couple of hours, but I figured if daylight from just sitting inside hurts like this, sitting in the sun would definitely be a nono…. so that was it for the whole period…. Inside the flat, curtains drawn… fun… )-:

The rest of the days were basically do-able but slightly frustrating as-well, boredom set in, Insomnia set-in, cabin fever started setting in towards the end of the week even.

I even had a night were suddenly my vision went completely on black, this was pretty scary and completely freaked me out, but when I woke-up the next day it was almost back to “normal” again…

The only thing that sort of kept me sane were visits of friends of mine, stopping by to bring me some lunch or dinner and some chat….and then secretly checking if I actually had eaten previously or if my fridge was still stocked up enough, and if not, arranging for some top-ups…

The only other time I got out was the last Saturday , where yet another friend of mine contacted me in the evening saying, get ready, we going out and getting something to eat… this initially was very daunting, as the previous venture out, wasn’t that successful, but at the same time, what kept me sane that time around was the company and patient assistance of my friends, and that would be the same this time around….I wasn’t alone, I had company, assistance, guidance… it be ok.

Also there was the added bonus that there’d be no daylight to irritate my eyes again, plus if id just constantly wore my sunglasses id be pretty ok I reckoned and im glad I did go out, as it was good for the mind and the soul… probably more a life saver then I initially let on I guess.

All in all this whole period was rougher then I had anticipated, it was quite confronting to be back into that “black hole” for a while, but at the same time, it was something that had to be done, and in a way is for a good cause, the future management of this disorder…

Onward and upwards….

Gong Xi Fa Cai 

“Going Blind”

“so yeah, I’m going blind for …. “

WHAAAAT????? Go back… you’re going blind?  What happened… Marco WTF?

“eh?”

Well, you just said youre going blind again…

“eh yeah??….oooohhh. naaaaaAAAHHHHHHH, hold on… “

(I was on the phone to my Friend Anna, and just realised she had not seen the Quotations marks I made when I said I was “going blind”)

“No, hold on, what I was trying to say was that, I’m going blind , insert quotations marks, for 10 days to give my eyes a rest for further  testing….”

And I proceed to tell her all the details of the upcoming time of “darkness”

I’m not allowed to wear my contacts for that period so that my eyes will have the most rest possible, and we create a new baseline to work from for future treatment/ management, as it looks my eyes have deteriorated… (which is to be expected with a degenerative disease), and as I only got this in my mid- thirties, opposed to the normal early teens, early twenties situation, the docs wanted to make sure everything get monitored a bit more stringent… .fair enough I guess..

But how is that going to work?

I have, ofcourse, gone through this (the “not seeing much to almost nothing” malarkey)  before, but at that stage I was co-habiting with my girlfriend, which in all honesty helped a lot… from following at least a similar routine / sleeping pattern  to the fact there’s someone there to talk to and with, instead of sitting there completely isolated… Plus I lived in a pretty well maintained area, pavements, road and public transport wise…. and now I’m living on my own, in a fairly new area to me..

I am pretty mobile with just using my Cane and although the roads and pavements here are a bit more filled with potholes I think I’ll be fine, then again, as some of my friends here have told me, it there might still be the  safety issue of the “vulnerable white man”  hobbling along.. 

Something I honestly had never  thought of , but will not just dismiss ofcourse, after having more than just one person mentioning it…

To be honest I have been told more than once that there is a big issue in KL with regards to “smash- grab ride-by’s” on motor bikes and you don’t want to just invite it I guess…

So even with a big Shopping mall almost on my Door Step, I can’t see myself venturing out a massive amount during this time … 

I have a swimming pool at the condo complex where I live and might just try and figure how to get there safely without using my lenses and just swim and swim… or ad least don’t stay inside the whole time…

Then there a question ive been asked over the last couple of days a lot as well.. .”how are you going to cope food wise? “

Well… whereas last time I coped pretty well, and cooked quite a lot myself actually, I now have to compromise a bit more…

Firstly, previously we had an induction stove and now I have gas…. Which I love cooking with, but it brings a different problem, instead of grabbing the panhandle the risk is too big I might just grab the flame instead, so that’s a massive no-no…

Cutting up Veg and meat wasn’t ideal last time around, and will definitely not be an idea now either.. I did have a better equipped kitchen so was able to improvise a bit more, not now…

So what then? 

Well, preparation seems the key…. Fill up my cupboard with easy food like instant noodles and stuff, bread of course and so on…

Fill up the fridge with Bread spread stuff, but also stock it with prepared meals… cook them the previous week and fill up the freezer section and fridge with the dishes… and reheat as and when required….. 

But , I hear you say... how you gonna reheat if you only have gas stoves?.. .well, a friend has offered me a small one point electric induction plate that can help with that… so yeah… there’s ways…

And of course, with so many small and cheap restaurant options (people say its cheaper to eat out in Malaysia then cooking ) there’s always the option of food deliveries….. Chinese, Indian, Malay, Thai,Japanese, Western and sooo much more…

Food Panda

RoomServiceDeliveries.com

Luckily my phone can be voice controlled…

Hi, is that McDonalds? ;-)

Yearly check-up

You would assume that any "normal" person would probably make pretty damn sure that for their first annual check-up they’d go back and visit the specialist that diagnosed them in the first place….

Well… I’m special…. , or  at least that’s what my parents, brother and aunts and uncles have been telling me my whole life, although I do  think its not meant in a “motivational” manner J

In any case, I did not do what the what a "normal" person would do…. my life had changed dramatically over the last 12months after diagnosis and I was now on the other side of the world and to be fair, the office of the specialist that diagnosed me was at least a 18 hrs travel away from where I currently live… so yeah… bit complicated I guess.

Since it wasn’t going to be practical to travel to London from Malaysia, for just a quick check-up I figured id better get myself organised and find a local specialist…

So, after a bit of online research and some queries aimed at the Keratoconus GB Facebook Support Group Via Twitter using the clever hashtag #kcfamily

 I found out that I was in luck… Petaling Jaya,an area around Kuala Lumpur, where I live has an excellent Eye Hospital stocked with Experts in the Field of Keratoconus, that are acknowledged region wide in the Asia Pacific area The "Tun Hussein Onn National Eye Hospital"

So i figured i would look at getting an apointmnet here as soon as possible.... 

It didn’t start off too well though,  after a failed attempt or 2  in contacting them myself  (language barrier issues ) I was ready  to just take a taxi and walk into reception (highly frustrated probably) and get myself sorted… luckily a local friend stepped in and got me set up with an appointment instead using much less drama. 

On the day of my appointment things got pretty interesting, more to do with cultural differences and language barriers i guess,  still pretty stressful though…

When I got to the hospital I had to first register, all of this goes via signage and a “pull your number to wait in line machine”. 

However, I could for the life of me not find this bloody machine, I found plenty of screens running the numbers off, but not a machine to get a number from…

On top of this I could not read the signage.. a common issue when you have KC I guess, but this was not because of my eyes sight, this was due to not being able to read Malay in the first place of course… J

Luckily there was a lovely lady at one of the desks that saw me looking quite lost and set me off in the right direction.

In the end I had seen 4 different people to register with,  handover my passport to and pay a “foreigner” Bond (all legit bytheway.. no silly business here at all ) before I even had reached the reception desk of the specialist I had to see…

Half of the time I didn’t even had a clue what was going on… but luckily my friend who made the appointment kept me calm by texting me every 5 minutes orso to ask how things were going.

Anyway, i had retrieved all the necessary documents and was finally allowed to go up to the third floor and see the specialist..

Once I had reached the waiting room for my appointment though  my heart sank…. It was packed…. And I mean PACKED…not enough chairs and way too many people…. This was gonna be fun…

In the end it took me an hour and a half from sitting down to be seen… but once I was seen,  things happened really really quickly indeed.

The head of department / main specialist Professor Dato DrVeera Ramani was holding a clinic and saw me first, after having spent a little bit conversing and checking my eyes she referred me to one of her KC experts a Mr Puva who took me through all the regular test like corneal topography, etc..

This took about an hour and a half, and by the time we had finished it was advised to come back a couple of weeks later to run more tests, but this time,  i should not wear my contacts for at least 10days before testing…to give rests to my eyes and be able to set a proper baseline of the status and condition of both eyes…

Made sense…  should be fine, I mean, ive done 8months of it before, so 10days should be pretty easy right? 

Right...........?