Friday, April 17, 2015

It's been a while..... A long long while indeed

My last post was January 2014,  over 15 months ago!!!!! My Apologies indeed

Guess things were going well? Not necessarily so,  not completely bad either,  just ok.....

So what's happened in between??

Well,  I met a awesome lady that I fell utterly I love with...

Went on a small holiday to langkawi with one of my best friends and her boyfriend where on a scooter trip I almost lost my kerasoft lens due to friction of wind .

And in June 2014 I moved (reluctantly) back to the UK, the project that had brought me here had collapsed and therefore my boss saw no reason to keep me in Malaysia and send me back....

So, suddenly I was back in the UK, my girlfriend and her kids still in Malaysia and things were a bit strained for a while,  but luckily she still thinks I'm special enough to stick around for me and I'm planning to go over soon and solidify our relationship.

And also,  much to my shame,  due to change in temperature, daily routine and eating habits and other reasons I ended up adding a stone back to my weight ... 

As for my eyes....  Well....  My Kerasoft lenses didn't take kind to the British weather,  seemingly the difference in atmosphere and humidity had an effect on the form and fit of the lens.

So I ended up having to switch contacts and get a new RGP......  On top of that the RGP didn't seem to get my eyes clear enough to be able to drive... And as for work,  I needed glasses on top of it again and a large screen laptop...... So in short,  at the moment things are  ticking along slowly and steadily....  Not necessarily anything to write home about I guess...

But hopefully soon I might have something to write about indeed....  As, as i have pointed out before,  despite functioning fairly normal most of the time,  I do have some issues with depth and width perception at times....  And i have found that I'm starting to use that more and more as an excuse,  and whereas in "the beginning"  I was keen on Challenging myself out of my comfort zone....  Pushing myself to find ways around obstacles that I either encountered in reality or obstacles I creates in my head..

And so,  I have decided,  (motivated and inspired by my old friend Alexis who's been running a couple of "mud-run's") to tackle a obstacle / mud-run myself in September,  up in Scotland,  just outside Edinburgh,

I'm intending to do so whilst trying to raise money and awareness for Keratoconus by aligning me to the moorfields eye hospital charity,  which is in aid towards amongst others research into Keratoconus   with moorfields being the leading hospital in the UK with expertise in the Keratoconus field it makes all the more sense to me to raise money for them.
In fact,  should you be so inclined,  you can make a donation via my page: It's easy, fast and totally secure.

So get ready for some annoying posts on my progress towards this run,  and leave some supportive messages if you want 

Monday, January 06, 2014

New Contacts, New Year

So, this new Lens….

What happened?
Well.. It came, I saw and I conquered? .. If only (-:

I received a call that the next version of the contact had arrived, and If I could come in and try it on.
So, there I went
(Remember.. The latest incarnation was that I could see, but only really sharp close up and not great at all… (read blurry as hell) when things got at arm’s length….)

Well, this was definitely and improvement on the distance thing, in fact at one point I could even see Shop signs across the road from the Optometrists office in the back in their Shop- Unit. Which promised something I guess. And had me at least back to driving conditions again…

The reading “close-up” has become slightly worse though, but not as much that it bothers me, just less sharp, and in certain case I will have to revert back to wearing Specs once again… All cool, and much better than seeing not much else at all in any case….
But now, how am I adapting to my new lens???
It’s weird. I was used to a hard and rigid lens, and although a lot of KC’s patients hate wearing them for me they worked ok, I had some depth issues because of it, but overall I cope pretty well.

These softer lenses however took a bit to get used to and when it concern wind and air-condition, it realy dries my eyes out, and its actually makes them more sensitive as in a weird way the “wind” seems to press on the lens itself a bit and moving the shoe a bit on occasions I guess..

But hey, I’ll get used to it, the overall viewing experience is what matters, and that itself seems to be quite good indeed… and I think the depth issues have been greatly reduced as well.. Fingers crossed..Might just have to go to test that out propperly and do some hiking again.. (-:

But has it settled?
Well, yes, but had some issues along the way that my optometrist explained away and now I’ve accepted my fate and its working just now, so hey.. .:


Have a read of this email convo with my Optometrist:


Just a quick mail as to how the experience with the latest lens is...

Mostly ok, but do have some issues transitioning from looking away from me, to reading straight in front of me.. Sometimes it feels like if i move my head, that the contact is slight slow to follow my eye if that makes sense.
Also, on occasion its feels like there a water drop in front of my iris, but then when blinking a bit more, it stabilizes..

Do you think we need another tweak?

Dear Marco,
the difficulty in transitioning from 1 distance to another that you experiencing is called “Accommodation Infacility”, which has nothing to do with the lens power.

Its part of the aging process, it happens to all 35 years old and above, and by 40 you will get “Presbyopia”.
Lenses tend to stick to steepest part of your cornea right after you blink, then the gravity pulls it down after a short while, that’s why right after blink, your upper eye lid grabs the lens and it drops slowly to your cornea again.

Tears accumulate behind the lens and it’s normal, if no tears beneath the lens, then it will be big problem as lens suction to cornea happen, which lead to dryness and staining due to cell death.

I reckon we can stick to this parameter and power, you need the reading glasses due to your age, not because of the lens power. Thanks."

I guess, in other words: your stuck with it buddy (-: It’s the best we can do just now..

So i've ordered a back up lens and see what my vision brings in 2014…

Happy new year everyone!!!!!

Monday, December 02, 2013

A new set?

After coming back from Sri Lanka, I still had about 5 days before I could pick-up my new contacts …. They were slightly delayed as the Malaysian Customs department had taken an interest in them.

I was so excited, as after more than 2 weeks of not seeing clearly at all….( In fact, all is saw was this… : )

I was so looking forward to being able to see properly again…..
Well…. That didn’t really go as planned… due to not having worn the RGP that “reshapes” my eye, my eye had settled into a more conical shape and therefor the new lens was waaaay of, and in fact I could not see anything clear if it was more than arm’s length away from me… )-:

The good thing was, that at least up-close visions was great, I could even read properly again, without assistance of additional glasses, something I could not achieve with the RGP’s , ( we had also ordered extra glasses especially for work and anti-glare purposes, but those at the moment in combination with these current versions of the kerasofts do not work as hoped. ) But that’s ok, as ill have a new set of contacts coming my way soon…

The thing is, it’s pretty normal not to get a new contact “right” straight away, it can take upto 6 sittings orso… the problem in my case is that the ones I’m getting now, are coming from the UK and can take a month to get here…
So we did some test straight away when I got fitted with the current one, and order a new version to be delivered next.. Which should hopefully be another week. If they then are fine, we are done, if however they still need some more tweaking, at least ill have a better version than I have just now, so that in itself is an improvement already and will make life slightly easier  for sure…

Let’s just wait and see I guess…

Wake-up call

A couple of weeks ago I had a bit of a wakeup call..

In my last post I mentioned I had been in to get new contacts fitted, and that they were meant to arrive around the first week of November.
All was perfectly fine, until I tripped…… and therefor braced myself and in some way due too muscle tension, “snapped” my last RGP lens…..

Unfortunately, as the new Kerasoft lens had not arrived yet, and I, therefor, did not posses a “back-up” lens anymore either, this meant I had to take off work, as I could not function properly.
I could only get by with a support cane and could in no way read properly so working was going to be a pain.

Fortunately, I was due a short break from work already and had already booked a trip to Sri Lanka to stay with a dear and close friend who lives there, so it meant I had a couple of days medical leave, my break, and then more medical leave until the Kerasoft lens had arrived.

I had initially thought of not going to Sri Lanka and just staying at home, but due to visa restrictions I had to leave the country anyway, besides, sitting home all alone when not being able to see properly, would have brought too many flashback from before being diagnosed.

So yeh, I went to Colombo and it was great!!!!! Yes, indeed, I couldn’t really go out on my own, as I reckoned walking along on my own, looking like a blind man, would probably not be the safest thing to do in a big city like Colombo. But I was constantly in company, and when my friend had to work I just lazed around her flat, and for one day even I got a tuck-tuck (they are scary when all you see is blurriness) to drop me off at one of the 5star hotels there and lazed around the pool for a day, and that,(despite not being the “spent a day at the pool” kinda guy) was kinda nice aswell… and even returned a bit sunburnt.

It wasn’t all plain sailing though… on my way to the airport I did notice people are pretty rude and just keep bumping into you, despite having a big red and white stick that say “oi… be careful” but hey, that’s how things are I guess… and yeh overall, its probably nice to be a tourist when you can actually see properly, but there’s always next time.

Although it wasn’t all horrible these weeks, I still had some full-on moments of feeling extremely vulnerable, going to shops, the bank, sitting in doctors’ offices etc.. .in one case a colleague who didn’t know about my KC saw me with my stick and questioned this when I returned to work, which was kind of awkward, but all good in the end. 

Tuesday, October 08, 2013

Getting a new Fit

Yesterday I had my latest Eye Exam.

My RGP's were/ are on their last legs. 

As previously blogged about I had been on a hospital visit here in Malaysia to get a Topography done, 

but had not yet seen an optometrist here in KL yet to get a fitting done based on that Topo... 

As for yesterdays visit... I went to a local Optometrist I found via the Keratomania Facebook Group . 

As i might have already eluded to in previous post, my right eye is sort of along for the ride and not like the greatest contributor to my vision and i basically do most of the work with my Left eye, back in the UK I had already had a discussion with my Specialist that i might not need to do anything for the right eye, as it would not bring any value, so when i met with Darren from USJ optometrist we decided to check both eyes out, and determine once and for all if it would ad any value whatsoever, and we came to the conclusion via chart tests etc, that it would not.. 
if anything i could always ad another contact if required, but for now, nope, we go with just my left eye as the right one is "beyond" control.

Anyways after having spent several hours at the Optometrist i've of course ended up with sore eyes to the max, as was to be expected but a new tactical approach with regards to new type of Contact lenses, and instead of the Rose K. RGP's  I previously used, we are going to try Kerasoft ones instead.. which will apparently help with reducing my depth n width perception issues a bit better. less bumping into things is always nice (-: 

I'm still going to need Specs on top of that though for special work circumstances, and i chose a nice and light frame for that and they will be fitted with a lenses with "anti glare" film, with some new "Blue Zone(??) technology (i've forgotten the exact name of it, but my buddie Huai Bin recently blogged about a similar product BlueControl)

I also, very rightly so, got told-off for not owning a "Proper" pair of Shades, but a cheap market stall equivalent.
So  I walked away with a proper pair of Ray-Ban's in the end... Thank heaven i'm in Malaysia, as in the UK or Holland that would've cost me my whole months salary i guess..

All in all a tiring, expensive but productive day...can't wait until the Kerasofts arrive.

Wednesday, October 02, 2013

Lover of the Light

In all honesty, depending on how my eyes are behaving on any given day, im not a BIG lover of the light, and should wear my sun glasses more often i guess.. .but I am a BIG fan of the actor Idris Elba.

An actor who, in my opinion,  has a screen presence that you just cant argue with, but for some reason, I had not yet seen the video he did a year ago or so for Mumford and Sons's "Lover of the Light."

I knew the song and for me it had already a certain meaning,
probably best described in the article you can find right here where the writer explains beautifully how songs can have multiple meanings from one person to another.

In there, she describes how she had one interpretation of the song in her head, and then through the Video itself another.

She writes:

"The video portrays a blind man who abandons his cane and ventures out into the world to run free in nature. While eyes are mentioned several times in the lyrics, this video is not suggesting that ‘Lover of the Light’ was written about a blind man. Instead the video serves as a beautiful metaphor for empowerment and inspiration – a man who literally puts his weakness behind him and runs wholeheartedly towards the light."

The reason i'm bringing it up is because when I saw the video earlier today I ended up a bit choked to be honest.. it provoked soo many different emotions, whilst the subject was dawning on me, ( I wasn't aware Elba was portraying a blind man here) 

It "clicked" when I saw him navigating himself through his house ( and surroundings) in ways I still do myself, when I have "bad eye" days, using "touch of hands and arms as a guide for determining, width, depth and distance.

Suddenly i started paying attention, and pressed start again, to watch from the beginning, and that's when it hit me... this is me... apart from the being completely being blind part of-course, just "blind" moments.....
but more as a metaphor of having gone through slowly loosing my sight, having found out i have KC, having learned how to manage it, how to deal with limitations it threw at me, and more to the point, just learnt how to just get on with it...

or as the aforementioned writer said in a much more poetic way...

"a man who literally puts his weakness behind him and runs wholeheartedly towards the light."

Friday, September 20, 2013


We recently had a horrible horrible haze here in South East Asia, caused by Forest Burning in Indonesia. which got me to go through my eye drops like there was no- tomorrow.. .in fact I went through more eye drops in that one week then I had done in the months since being here.

Now, I hadn’t been able to find the drops I use here in Malaysia, but luckily a Malaysian friend of mine who was visiting the UK was able to bring me back a batch as back-up

However, it got me talking about Lens and Eye care routines...

I use these drops when my eyes are irritated whilst wearing my contacts.

There are of course other options out there, which I have tried aswell, (blink, the brand I use do actually sell bottles, but not the vials I use… which gives me much better portion control as such)  and so I keep coming back to these... another issue is that the products I use for lens care aren’t as easy to get here in Malaysia.. so I’m at the mercy of others with getting them willing enough to bring some back from the UK... and so far they actually are….

Maybe I should adapt and start using the products I can find here, but its tricky, as you might appreciate Eyes are sensitive, and once you have something that works for you and keeps your eyes “calm” its best to stick with it..

For instance, the daily lens cleaner I use is free from preservatives and basically makes my contacts feel cool and clean.. Just like they came out of a refreshing cool shower... and the other ones I used I find them oily, and "filmy" it might be just me, but hey... i have to wear them i guess.. so whatever works for me right???

Another instance is as well, that in my case we are talking RGP (Rigid/ “Hard”) lenses, and most regular products you find in shops here are for soft lenses, so sometimes its about looking a bit further as well

In any case.. These are my products of choice...

"Regard K is the world’s first preservative free multipurpose solution for rigid (hard) contact lenses. It’s also one of only two preservation free solutions on the market today - the other is 3% Hydrogen Peroxide.
Regard RGP K offers a high level of disinfectant that ensures all debris, dirt, grit and impurities are removed from gas permeable lenses without damaging the surface. You can expect to experience a high level of comfort from Regard RGP K solution, as its preservative free formula is more eye friendly, especially for those who suffer from sensitive eyes, as the preservatives in traditional solutions are known to cause irritation." 

"Menicon Progent - is a weekly protein remover, disinfectant and intensive cleaner compatible with all RGP contact lenses. To ensure excellent comfort and prolong the life of your RGP lenses it is recommended to remove proteins with Menicon Progent weekly, Menicon Progent is a solution particularly recommended for cleaning and removing proteins from the surface of the lens by simply soaking them in the mixture for only 30 minutes periodically. The efficacy of Menicon Progent lies in its strong, rapid action against all the organisms likely to contaminate lenses, including bacteria, moulds, yeasts, viruses and Ancanthamoeba trophozoites and cysts."

"Blink contacts vials are eye drops that help you capture the feeling of a natural tear by using a preservative free formula to create a smooth and soothing protective shield on the eye that provides a long-lasting comfort.
Blink Contacts eye drops can be used by both soft and rigid-gas permeable (RGP) wearers.
Each pack contains 20 convenient sized vials that you can keep in your handbag, at work, or even in your gym bag. Each vial contains a dose of 0.35mls."

Wednesday, September 11, 2013

The Road Ahead

This week marks my one year anniversary being in Malaysia and a year and a half since returning to work after my Vision issues.. what a difference a year and a bit makes...

where initially a couple of weeks after returning to work i didn't really see a proper future where i could work regular, i couldn't even work for more then a couple of hours a day, and as for social activities i could not even get my head around as to what i could and what i couldn't do.. and looking back now, i can see so much has changed...

there is the Physical evidence....

but there are definitely some big Mental and Cultural changes ... and its just been one massive journey... a journey i've been glad i went on... and although even a couple of weeks ago i was ready to pack it all in and go and just live in my parents attic, which just confirms life is about ups and downs more then anything else.... its been a journey worth traveling...

So guess i'm just going to focus on the road ahead and see what happens........

"The road ahead is empty
It's paved, with miles of the unknown
Whatever seems to be your destination
Take life the way it comes, take life the way it is"