April 2012 - First time for everything?

Apart from the whole re-adjusting to work life there was also the part of re-adjusting to “general life”

As mentioned I started a bit of exercise by joining a rowing club.

But there was also the going into shops again, going to pubs n restaurant and clubs again… well, that went with its ups and downs as-well.

The going to shops itself was fine, I saw properly again, so no need for panic attacks, but I did notice I sort of had to get used to bigger crowds… oh well…  

I ended up spending the Easter Weekend at my mates "Stag Do" In Scotland, and started to notice some adjustment issues…

·        Restaurant menus are pain, mainly due to poor lightning in the restaurant itself I guess..

·        Alcohol dehydrates, and that has an effect on my eyes and cause irritation on dry eyes, and hard lenses, so if I want to drink I need to use loads of eye drops to counter act the irritation, or just drink so much I don’t notice the irritation (-:

·        Walking from a fully lit area into a darkened area, like a cinema screen is very dis-orientation, as previously my eyes would easily adjust to the darkness, but now it takes so long, I need to stand still to avoid me stepping somewhere that could make me trip.

·        Visiting a Night Club is pretty interesting as-well… Dark… loads of moving lights, and steps left right and centre…. Might need to wait a while before I go and revisit any clubs… 

·        Too much time in a Sainsbury or Asda and the overhead lightning just gives me eyestrain and head ache…

All in all, not major issue, but interesting to know, and it got me in a frame of mind, that in theory I’m going through a lot of “First Time” Experiences again, things that I had taken for granted, might now need a different approach or if anything a more careful approach.

Not a bad thing…

April 2012 - Last option

For weeks I had been trying to re-integrate into a working situation, and it just wasn’t going as had hoped..

My eyes couldn't sustain a days work, and it was just dragging, my hopes were set on these “Specs” that were ordered and should arrive anytime now… 

I had arranged for them to be sent to my place of work straight away, so I could just get it over and done with, this was either going to help me and enable me to work normally, or, it wasn’t and then we would seriously need to look at a career change or worse…

Subconsciously I think I was definitely making this a “moment” and the tension was building up… until it arrived… and I tried them on……..

Ten minutes later I looked over to my colleague and said, we’ve got 2 options here, you either give me one of your cigarettes or I’m going to start crying here on the spot….

A cigarette it was… and I was ecstatic. It seems to do the trick, I didn't have to squint anymore, the screen didn't glare, it was all in focus…. Of course, these were early indications, but man… I was f-in happy for sure….

April 2012 - Row Row Row your boat…

After having piled on the weight during the previous months, and just in general not been in shape at all, I figured I would really need to do something involving exercise…

But what? I mean, you could lose the contacts right? And then well, there be some fun to be had…

I had been checking a bit with people on the KC Facebook page to see what kind of sports the where able to do, but it did come down to being careful not to knock the lenses out for sure...

I’ve never been very sporty in the first place.

Don’t get me wrong, over the years there has been football (soccer), Taekwondo, a bit of swimming  and several Health club memberships, but it never was a constant factor as such…  but I was well aware that this time I really had to change things, as yes, this whole thing had brought me down, but maybe, just maybe I had been just that little bit fitter or healthier, I might have been able to cope with it all a bit better… then again, that might be just something I was telling myself…

The core of it was that I wasn’t healthy, and I should make sure I was, as I did never want to go back “there”

Before I went on sick-leave, I had slowly started training for a 4 day walking event in Holland were you walk 50km a day for 4 days, and I had figured that would be a good thing for me to start working on getting healthier, as I already then had realised that I was heading in the wrong way, but unfortunately I had to cut that short, as I literally almost walked into the River Thames…

And thinking back to that, I had an idea… Rowing!!!!! I had seen quite some rowing crews along the Thames during my walks there, and had thought about joining a rowing club before but was sort of held back with the potential “old boys club” idea it might just bring with it…

When I started mulling it over, I figured that theoretically I wouldn’t need my eyes in the first place.. (not completely true of course, but still…) and it would be a great way of building stamina and overall physical fitness… So I started looking around and found that the area I was moving to actually had a new rowing club near it, a club that only had started the year before and consisted of a couple of massive rowing enthusiast that just did it for the love of the sport and wanted to bring something together, and that sounded good to me..   

Having explained my issue and thoughts to one of the founders, I found myself attending one of the taster sessions and found myself hooked…. This was gonna be fun…

http://www.devilselbowrowing.co.uk/

April 2012 - Its not working

I’d been back at work now for a week or 2, and started to get anxious as it wasn’t really going the way I had hoped…

Part of my job is that I have to train people using our software package , and that involved looking over peoples shoulders in a class room situation, looking at what they are doing, and to see f they are going the right way or not, and if needs be correct them and show them the right way… well, that was one thing that definitely wasn’t working the right way, I couldn’t see shit on the screen it was too far away….  Bummer…

My other tasks were pretty do-able, but I could only do half days, as by the time id hit 3pm, my eyes were sore and teary, and I ended squinting more and more…

Not good….

What now? What if I can’t work the way I used to, what then?

Of course, work would have to make reasonable adjustments etc, but still… its more than expecting Work to adapt to you.. maybe I’m not being able to tackle KC as  much as I though i could… Wow.. and I was in such a good place for a while, and now this was sooooo dragging me down..

My first port of call was my optometrist, and explained the dilemma.. .and she was so cool and collected about it, that I put my mind at rest for a bit… she said, “come in for a test where we will try and fit you with Glasses to use on Top of your contacts….”

Which I did, and it looked like we had found a balance in the testing environment, however it was made clear enough, that this was a last resort and if it didn’t work, well, then we had something else to think about..

And that other thing to think about, really got to me, what if I can’t work as I supposed to, my right eye is close to being legally blind, what if I have to going on disability benefits, what if? Would I be better off moving back to Holland and bug my parents? What if?  What if?

One of the calls I made was also to an old friend who works in HR and I battered her with question after question, and very patiently answered all the questions that bothered me, and then said, but… shall we wait first and see what the glasses do?

She was right…. What will the glasses do?

April 2012 - Going back to work

I had already been experimenting with Laptop screen set-ups, and app called Eye-leo
http://eyeleo.com/

This reminds you every 15mins or so to avert your eyes from the screen, and tells you every so often to have a proper 5 minute break 

And an app called F.lux which reduces glare on the screen…

http://stereopsis.com/flux/

I also played around with the Windows functionality to change to inverted colours so that the glare hurted my eyes less.

As although I could sort of see things much better now, there is still the issue of over sensitivity to light that needs tackled, and well, in an office space and looking at a computer screen for 80% of the working day is not the best things then….

My GP and my Lens fitter had said to take it easy, from both a mental and an Eye perspective, their advice had been to do half days to start off with and just build up….

The first day went ok, it was only a couple of hours and involved a lot of catching up in a way… but wow, it was pretty tiring, both physically and mentally .. but I got through it and over the days to follow I could stretch it more and more, this involved many breaks, and a lot of use of Eye Drops, but it worked….

It’s a start.

April 2012 - Lost it

FUCK FUCK FUCK!!!!!!!!!!!

It’s the night before returning to work after an 8^th month absence, and I’ve just lost one of my lenses…..

What now, what if i cant find it, I cant go to work, can I?

I was taking them out, and one fell… and I can’t freaking find it… to say I’m stressed out is putting it mildly…

I had taken all the safety measure, in an area with loads of light, bathroom, stopper over the drain so it can’t go in there, etc etc… but its gone….

For about 15 minutes I attempt finding it myself, until I just have to give in and wake my housemate….

And surprise surprise, another 15/20minutes spent and we still can’t find it…

Until....she suddenly spots it...... on the tip of the bathrooms sinks tap…. Seriously!?!?!?!?!

We had been scouring the floor, any nook and cranny we could possibly come up with to find it on the tip of a tap??  the lens is slightly blue-ish, and this, on a clear silvery surface, can be tricky to find, but still, who would look there?

In any case, it gave me a massive scare, and loads of thinking time about making sure I would have another spare set of lenses in the first place, just in-case something would go wrong, but to spent another £500 just in case I would do something stupid??… well….. if you know me, u probably would’ve told me I probably should’ve….

Ok, I’ll think about it.. For now.. back to work in the morning (-:

The Gift of Vision

Just back from my Trip to Bali and can only say the following…

Wow……

A year ago I was convinced I’d be home-bound for the rest of my life, due to being depressed and not being able to see…. And now, well…. It’s a bit of a different story for sure…

Last year I looked like this 

and saw things like this…

12-months on and I have come to the root of my vision issues, have had a positive change in both personal life and professional life and now look like this, 

and see things like this…

Life is good, I’ve got people in my life all over the world that care about me and who in return I care about a lot as well…  and although I’m sure at times I annoy the shit out of them often enough, they’ll stick with me, and I’ll stick with them…  

I for one, can’t wait to see (pun intended) what the future has in store 

Moving on…

This post is a temporary jump into present day, before continuing to bring you slowly but steadily uptodate the way ive been doing so far.

My last post got me thinking a bit, I had moved.. but what did that really mean?

I had moved out, of a flat I loved, and moved into a new living situation into a fantastic house with a little 3 person family who at that stage didn’t realise we would end up “adopting” each other as part of that little family, which luckily we did… .

Unfortunately I had to move on again only months later for a new challenge that came along my path, with my boss offering me a job role in the Asia-Pacific region, which I just could not say no to, after having spent the previous year struggling with what was wrong with me, I now had a chance to move on from that..

And with all that moving comes meeting new people and leaving others behind, close friends and family in Europe who couldn’t be happier for me, my ex who.. well, I suppose is happy to have gotten rid of me, but still happy things were moving in a positive direction

I have now moved to Kuala Lumpur, Malaysia and am looking to settle here for the next couple of years, if not permanently.

With this move I have met, again, more people, and 1 or 2 people that seem to become very good and close friends, people that I hope will be part of my (Malaysian) life  for a long time to come.

And its all this moving that made me think… I had come out of my sickleave pretty positive, we finally knew what was wrong with my eyes, I kicked my bout of depression, but then, my relationship ended.. 4yrs  of being together with a person I loved dearly ended… this could have brought me down crashing back to earth in no time, but its these previously mentioned friends and family that prevented that from happening, and although I was gutted and sad about it, it became a situation of concentrating on all the people that were still in my life, all the love I had felt from them during my bad spell, and was still getting from them, this in itself helped me Move on, and it made me realise that, yeah, maybe being in a relationship is what we all want, but don’t forget to value what’s around you already…the support of my friends and family have made this year a positive one for me and are responsible for me to be able to move on..…  and its only sad that KC is the catalyst for me to finally see that more clearly....(yes, pun intended)

I’m am off to Bali on holiday for a couple of days next week with one of the above mentioned new friends as a well- deserved break and treat to finish off this eventful year for me.  I had also planned to do a bit of hiking with anther of my new friends in Malaysia itself, but unfortunately I had to cancel on that due to work commitments, but am sure we will do so at some point anyway…

I’m mentioning this as initially going on these trips slightly freaked me out, as I’m still trying to identify how my eyes and RGP’s will behave in certain situations.
I still regularly trip and stumble due to some irregular depth perception issues… how would that go during a proper hike? or even walking  along a beach or something?.. .on my own it could be potential comedy, but because of friends its just another step in moving on….

March 2012 -The Move

The day of the move had come, a couple days before cautiously going back to work….and it was scary….

I had to drive a long distance (London Heathrow Area - Nottingham ) since the first time I was allowed to drive again, on top of that I didn't have a clue what the car was going to do, it had been standing on the side of the road for many months so it could be forgiven for playing up.

As I was moving into a fully furnished situation it was only going to be 2 car loads of things. 

Its amazing that after having moved the probably 15/16 times in the last 13yrs, I still had soooo much shit to drag with me.

The idea had been to move in two parts, from an eye & drive safety perspective, and it wouldn’t be a bad thing to start unpacking half when I’m there already..

Well, the driving went well, but none of the unpacking happened, as on arrival I got welcomed by my new housemate with a bottle of wine and dinner, so guess that had to happen the next time when I came back with the rest.

Two days later I brought over the rest, and I had noticed a few things…

My eyes were OK with Driving, 

The car was fine, 

and I was a wreck….

To be honest I never had been the most fittest of persons, but this sitting at home business and my light bout of depression, had made me balloon to 125kg and that wasn't good, (at time of Writing, I can luckily say I have been able to loose 30kg of that already and am hoping to lose even more in the upcoming months…) and on top of that just walking up or down the stairs with a box or whatever, had me out of breath before reaching the top of the stairs.

So yes, I was fit for work, but was I fit? 

March 2012 - Driving - (a Car this time)

I hadn't driven a car since I went off on sick leave, 8 months of not driving, and I hadn't really thought about it really until one day when I visited Holland for my brothers surprise leaving party, when we were in the car at night and suddenly a whole host of street lights merged into a sort of chain of light, the light bulbs had become circles and started interconnecting like the Olympic rings almost.

Why hadn't I noticed it before?? I don’t know, maybe that this time I sat on the side of where I would normally sit to drive in the UK, with the steering wheel being on a different side in Holland, it might have been the issue… I don’t know, but I noticed it and it freak me out….

I had over-time, before going on leave, noticed that driving, especially at night or during twilight, wasn't one of my favourite things to do anymore.

It actually had started to scare me slightly.. Making up excuses to not pick up my girlfriend from work when I worked from home, looking at getting somewhere by train instead of the car, but still driving… against better judgment…

none the less, when my sight was coming back due to these RGP lenses, I did have some hope I would be able to drive again, but wasn't counting on it, and had accepted that, if not, well, then not…

However, after finally having settled on the last pair of lenses that worked for me, and being told, go and live your life, it’s all good and come back next year, unless something happens. I also got told my sight was apparently good enough to drive again… (yes!!!!)

So, when I got home, I started the car…. and it didn't start… )-:

Obviously….. it had been standing along the road for the last 8 months with not much action apart from getting its MOT done 2 months before. No doubt the Battery hadn't liked this non-movement, and emptied itself, and to be fair, it was old anyway, and probably should’ve been replaced anyway… so first that had to be sorted…

Anyway, the next day.. I had gotten a new battery from a garage just across the road, and placed it in, and started the car… Yes!!!!!  It worked… so now… putting in the damn thing into gear and go for a spin…

Man, that was weird, my heart was beating like I don’t know what, adrenaline rushing through my body like there was no tomorrow, and all I had done was drive to the Petrol station…

After having filled up the tank and gathered my senses, I decided to drive on instead of just returning home, and it actually went pretty good indeed… I did not have any blurry vision or un-sharpness, there was a little bit of the two cyclists in the distance turning into one cyclist when I got closer, but was that a problem or not?

I mean, once you know that’s the case, you can work with that, and when I say distance I mean "Distance", as in more than half the length of a football pitch away from me..

And I noticed it was only on narrow and small things.. Not with cars or anything bigger… all in all it went much better than I had hoped, and more importantly probably better than the last time I had driven. 

A good start...


"I Stopped To Fill My Car Up" - Stereophonics

i stopped to fill my car up 
the car felt good that day 
i didn't know where i was going 
but it felt good for a change 
a five and a pocket full of silver 
i paid the lady no change 
and then it started to piss down 
i started driving again 
and then i looked up 
and looked in the mirror behind me 
a man round forty in the back seat 
must have stepped in when i was empty 
so why's he sat there just waiting 
likely to smash my face in 
he had a bag full of money 
he said just drive me away 
i didn't know where i was going 
yet it felt good to be strange 
and still i look up 
and look in the mirror behind me 
curiosity is over 
he stepped down from the car 
he pulled a gun from his jacket 
said i was going to die 
it gives me so much satisfaction 
to watch you beg and cry 
well i just made up this story 
to get your attention makes me smile 
i never looked up or looked 
in the mirror behind me

March 2012 - How do you explain this?

We had settled on the right lenses for me, and that mean a proper set was ordered, and that I didn’t have anything to wear for another week orso…

But, I had to do stuff…  Most importantly, I had been “hunting” for a place to live…

We lived round about the London/ Heathrow area for the last 3years orso, and although that was fine, my Head Office was in the East Midlands, and most of the time I was “on the road” anyway, so it didn’t make a massive difference of where I lived. However, I was looking to return to work soon, and looking for accommodation due to the breakup with my girlfriend.

Now, I figured that having missed out on work for the last 7/8months I must be behind on things happening, and probably forgotten a couple of things as well, so why stay inside the M25, and not just go live closer to the office, and work there if I’m not “on the road…” ?? made sense..

So there I went, looking for accommodation. .  I had a plan, I had figured that after spending so much time “in my Head” over the months before, getting a place just for myself, might not be the best idea ever… so maybe a house share might be the way forward. I had found 3 suitable places and one flat for me on my own as well, just in case… I had settled on an easy commutable place 20 minutes away from our office, and went to meet the people I had contacted… but…. Eh.. how do you approach the subject, that normally you might function ok-ish, but today they will be meeting someone with silly yellow specs and a cane….?  

With a sense of humour seems to be the answer… no fretting, just put it out there, make a joke or 2 about possibly tripping somewhere and it all just flows…

All of this might sound weird, and maybe it shouldnt be someothing to worry about in the first place, but I have found over the last couple of months that there are many times I have had to explain my situation and what it means… maybe more, as because of work I ended up re-locating again only months later to the Asia Pacific region, where I met new colleagues Customers and Friends… and sometimes it’s not relevant, but when you do spent a lot of time together it does become relevant..

In the end I settled on a house-share where I had a lot of space for myself, but still would, if needs be, be able to socialise with the family I was sharing with, and that ended up being a pretty good idea

February 2012 - Test-Driving: 2nd round

My Friend from Sweden had invited me over for a long weekend after she had heard I’d be living with my ex for another 6 weeks after our break-up and had decided it’s not a healthy environment to “recover” in, so  she flew me over and I ended up testing me 2^nd set of lenses in Sweden…

There’s worse places to be I guess.. (-:

Again, it was process of loads of different emotions and experience, but maybe it was because I was enjoying a different environment, and being away from the place I had started to loath so much (mainly because I had sort of been “imprisoned” in it for so long.) and of course spending time with a dear and close friend, but the 2^nd run of lenses were so much better fitting wise and vision wise….

It gave me a chance to experiment with putting them “in” and Taking then “out” in a relaxed situation.. Which at the time I didn't recognise as much as now, but yeah, it did help a lot..

She had to work the most of the time, but there were some hours we were able to do just things, like going for walk with her families dog, I didn't realise how much I missed being able to do something like that until then...

Man, how liberating... silly, but true..

During the times she was working, I took my time with trying to wear the Contacts longer and longer, put them in for a couple of hours, take them out, rest and lie down a bit, then after an hour or 2, back in with them… and my eyes were protesting less and less… until on one of the last days they didn't co-operate, and they just weren't going in, no matter what I tried, obviously my tactics had backfired on me…

So, instead of having a nice Brisky walk with my friend through a stunning Malmo, it ended up being Her, Me and my Cane, going for a little wander… not the same… not the same at all..

Another bit of fun added to this was… Flying with RGP lenses.

I was informed by my lens-fitter that that apparently could be a challenge, as the recycled air inside the plane does dry out your eyes, and dry-eyes and RGP lenses do not really go together very well.

So instead of being brave and bold, I bolted, and just went with my cane, and let the nice looking (I think) Scandinavian Stewardesses guide me to my seat… both to Sweden and Back to the UK, which in hind sight added to my relaxing 2^nd week of testing.

All in all a much more steadier experience this second week for sure, and I had good hopes for the future.. 

February 2012 - Test-Driving: The Results

So how did it go?

To be honest, it was an attack on the senses like I've not experienced before…with a big bag of various emotions to boot…upsetting, jubilant, motivating, de-motivating, promising, encouraging, infuriating ….and so much more…

Initially there’s the euphoria of being able to see again, like a normal human being, seeing colours, details, (being able to do the dishes and know for sure that they are clean!!!)

I for instance spotted that after living there for almost a year that the wall of the landing in from of our Flat’s front door had a patterned relief on it… my ex, who had been living there just as long, hadn’t even noticed that… and her eyes were pretty perfect…

As previously mentioned, colours were so full-on and intense that I was convinced I’ve never seen properly in the first place.

Being able to see people’s faces was probably the biggest emotional thing to hit me… but even going to shops again without having to cower in the isles or just walk there without having to worry about tripping was such a relieve… and although I had just started coming out of a depression, which with ending a long relationship in the midst of it isn’t an easy thing to do, I can definitely credit my eyesight “returning” and experiencing all these positive things again to being able to "climb out" that bit sooner…

But… it wasn’t all good and great…

The pain and irritation on my eyes was no fun at all, but all for a good cause… I slowly build up from wearing them for 90 minutes to probably 3 hours the first week,( the second week I went to 6hrs…)

I slowly build it up… but easy? No… it wasn’t…

Another upsetting fact was realising (again) all the things taken away from you when your vision goes… 

Taking the contacts out after testing brought me back down quickly enough, having to stumble around the flat again, realising you really can't see shit without them…

But also realising that even with the lenses in there are still some things way out of focus, especially in the distance… one runner or cyclist approx. 50meters away from me, would look like 2, until they would suddenly merge into one whilst they would come closer…

Reading things up close was a problem, Bus timetables, Doctors Notes, News papers, I still needed to squint,

 “but everything else was great, so come on, feel good about it.. “ 

Yeah, but I need to read a lot in my job, a lot of computer screen, so what with that then?

In the end, of course the positives outweighed the negatives of course, but it’s all that Alone Time that just messes with your head way too much..

Of course, these were only the first test lenses… lets get a second set and see…

February 2012 - Test-driving

Finally the day has arrived…. I am getting my first “Test” pair of contacts

I am so excited, I didn’t really sleep properly because of it.. (Back to being a 6yr old kid again? )

It will be a pain to get used to them.. .literally, but it is so going to be worth it .. right?

“There we go, put them in, take them out, put them back in again, and out…. How’s that?” The previously mentioned pretty optometrist lady asks

Yeah, ok I think…

“Ok, so, go and keep them in for another 30 minutes, maybe go and have a coffee across the road and come back and tell me how it goes..”

Ok… and I’m off… ….

WOW Colours.. .soo intense… Focus & Sharpness… So…. WOW…. Steps, I can see…. Width, I can judge… the barista that’s making my coffee has a normal not blurry face (-:

 I swear, if it wasn’t for the fact my eyes were already watery because of the HARD PIECE OF PLASTIC that’s been placed on them, I’d be shedding real tears…

“How did that go?”

Well, to be honest, great… but quite a bit of an overload at the same time, I genuinely think I have not seen colours as bright and intense as this in my life..

“Good… well, how is the comfort? Is it bearable?”

Yeah, well its irritating a bit, but worth it..I guess

“Ok, well, you will need to build up slowly, and it will probably take a month to be ready to wear them constantly, and before you will be able to commence full time work again.. if we are lucky.

As this is only the first pair, and we probably will have to adjust here and there, for comfort and strength… but for now.. go out wear them for an hour and half,, and you will notice your eyes will be happy to take them out.. .but tomorrow you try and build it up a bit more and so on and so on…”

There I went, almost seeing clearly now….

February 2012 - Can I see clearly now?

“Take it out pleaaaaaaasseee…..”

I’m sitting in the office of my optometrist, my lens fitter..  And I’m shouting like a little 6yrs old.. 

“Seriously, what’s wrong with me?”

She just placed a little piece of hard plastic on top of my eye and it freaking hurt like hell… 

“but she told me I wouldn't feel a  thing… yeah, just like they say a needle doesn’t hurt or the dentist doesn’t hurt you either.. Marco, you are an idiot… “

Don’t worry, you are doing much better than expected.. “Seriously?” but I’ll put some anesthetic drops in both of your eyes and we will try again…

Erhm… well, can we wait?.. oh, they are in already… “wow ur pretty” , eh, I can actually see her in focus? WTF?   

Before I had a chance to think what just happened she asks me if I can start reading the lines on the board. “With Pleasure”  (-:

Twenty minutes later I’m outside again and all (of-course) is back to being blurry… we had determined the “settings” of the first test lenses” and I should be able to pick them up the next Friday.. YES!!!!

Sitting on the bus back home it suddenly hits me… I was able to see clearly again… it was so intense.. colours, non-blurry face, pretty face (-: 

But then it really hit me, no matter how pretty my optometrist was… I really had wanted other people to have been the ones I could see clearly again like this… my Girlfriend (who wasn't my girlfriend anymore), my Dad, My Mother, My Brother, My Friends..  but it wasn't any of them, just a very pretty optometrist lady…

Oh well, it’s a start….

February 2012 - Say Hello and Wave Goodbyes

My visit to the homeland was pretty good, I had spent a good time with my brother, by taking a little journey to the south of Holland to meet up with one of our best friends…and we had a great evening with him and his wife.

I did get the impression that I probably was in a worse shape then the last time they saw me, which was kind of sad, as I sort of still felt on a high because of the whole upcoming lens fitting..

I Spent the rest of the time in Holland with my Parents and some other family that dropped by.. all in all a good time…

Until I came home again… my girlfriend was acting slightly weird… and I couldn’t figure out what was wrong,.

Oh well, that sometimes happens, until it was still the case the next day…. so when finally asked what was wrong, it came out…

"We need to talk.. .we should face up to the facts and stop kidding ourselves, this isn’t working, we need to accept its over…"  Wow, I thought…… you are right…

In all honesty, after almost 4yrs we had grown more into siblings than a couple… and in hindsight, if it hadn’t been for my eyes, it would’ve been over months ago, but there must’ve been something along the lines of , “well, we cant break up now can we?” not whilst this is going on”

All I can think of is that without her over that period I would not have coped, and if I would’ve had to go through the whole thing on my own, well I’m not sure I want to think about that.. It would’ve been pretty dark for sure…So I can only be eternally grateful, for standing by my side during all of this, which Im pretty sure she knows…

We still had 2 months lease left on our apartment so we decided to still live together until then and after that go our own way from there.. .

Weird? Maybe, but hey.. .going on like all is fine, whilst it isn’t,  is probably worse…

February 2012 - Visiting the Homeland for the Weekend.

Ladies and Gentlemen, This is your Captain speaking, I am sorry to tell you that it will be at least another 2.5hrs before we will take off today. We decided it was better to get you onto the plane and wait, instead of probably cancelling the flight..  (Well something along those line)

Its Friday morning and the first weekend in February, and I’m sitting in a plane towards Amsterdam.

A couple of days before I had been to see the Optometrist to see about what the way forward was with my Contacts and the road to tackle my vision. And I felt good…..pretty good indeed.

The reason I’m on the plane is that my brother is off to work in Afghanistan, at Kandahar Airbase and they are throwing a surprise leaving party for him. 

And as I wasn't doing anything else anyway it was suggested it would be nice if I could be there as well..

So there I went, should be pretty painless… take the 11am bus from outside my apartment to Heathrow Terminal 5, check-in, make my way to the Gate, get-in, get –out at the other side take the train to the closest station to my Parents home, get picked up, and eventually go to the restaurant…. Should be pretty straight forward no?

Well, getting to T5 was easy, getting checked in was a bit more difficult, as all the lights in there were completely freaking me out…. But hey, that’s why I’ve got my Yellow tinted Shades, to take the glare of in the first place..

Once I had managed find the check-in desk and got myself checked- in and make my way to the plane  is when the fun started… due to bad weather conditions in Holland, Schiphol airport had closed their runway for a while. So, a plane ride which normally would take an hour or so, now ended up taking 5hrs…. which itself was fine, I mean, I sat in my chair, listened to my audiobooks and Podcast, so I was fine… untill I got out at the other end…  

Not only had Schiphol grinded to a halt, the whole of the public transport network and the motorways were on its ass… so, no trains either, no buses, no cars able to pick me up, no nothing….

Now, there I am, in the middle of Schiphol’s arrivals halls, glaring lights everywhere, surrounded by a crowd of people, all stressed about not being able to get where they want to go, I’m stressed because of not being able to go where I want to go, but on top off that I’m being bumped into every couple of minutes or so… this is not good….

Until I suddenly realise, I have A. My cane and B, my silly yellow tinted specs… surely people will notice me hobbling along that way right?

Well, yep they did… did it get me to my destination any sooner?  Nope…. It took me the best of 3/4hrs to make my way to where the surprise party was with the train as they had starting to drive again...and as  it was chaos, I went in directions that were so counter intuitive that I figured the people organising the train had the same visual impairments I had… but finally I did get there.

Sure enough, by that time, the dinner party was already breaking up, in fact people were already grabbing their coats. And I’m guessing my brother must’ve figured something was up when my dad just kept texting someone (me) back and forth (the man doesn’t know how to text in the first place)

In the end it took me over 12hrs to get to the party, and yes it was disappointing that the party was in a way already ended, but what was more saddening is that I didn’t recognise my own Dad until he approached me at the Station, I didn’t recognise my Mum until she hugged me, and I Didn’t even see where my brother was sitting in the room until he got up and approached me.. ony then I figured it must be him coming upto me for a hug.

Wow…..

What a way to come down from a massive high of only 3 days before.

If only that was the only downer in the next week’s or so….

January 2012 - Contact Lenses fitting

On a blistery but sunny late January morning  i’m in the bus, passing the grandeur of Hampton Court Palace and its stunning gardens…

I’m sure it’s looking lovely, I just can’t really see all the different layers of colours with the leaves and frosty grass to really appreciate it… (maybe very soon though)

I have an appointment with a specialised optometrist in Esher, Surrey who has experience in dealing with Keratoconus patients, she’s going to do some more test to determine my “Corneal curve” (remember I mentioned the Nipple Cone things, well that makes it all even more fun apparently) and ofcourse the standard reading of charts etc etc… and then we discuss what the next options are.

In my case it ends up RGP lenses, (RGP - Gas permeable contact lenses which are rigid lenses made of durable plastic that transmits oxygen.)

In a way , pretty hard contact lenses that I, over the months, have come to describe as having the plastic cover part of a drawing pin placed on your eye all day (at that stage I didn’t have a clue about any of that yet of course…)

Anyway she will order some test samples and if I come back next week we will take it from there…

Looking forward to it..

Friends 2 - and pretending I am fine.…

Over the period I had been on sick leave, I had spent a lot of time inside as mentioned in previous posts… also, as mentioned I did have the odd outing when friends came over…

To various results.

In the early stages , even before I went off on sick leave, a friend of mine from Scotland came over and spent the weekend with us, we are close and I noticed he was definitely worried, but hey… I’m stubborn, and I just kept going… whereas he definitely saw something wasn’t right.. He told me off, but again, I’m stubborn, “it will work itself out”, “don’t worry I’ll be fine”, “I just need to rest my eyes a bit that’s all…”

Then there was the time another friend of mine came over with her husband, also from Scotland, and that’s when previously mentioned “nearly panic attack in the department shop” happened.. Again, I hid my issue, and kept brave…

Around that same time my brother and one of our life long friends came over from the homeland and joined up with a friend of mine from Sweden… again.. I noticed they were worried, but hey… I was “out of it” on tramadol’s, so I didn’t "really" notice, I just kept going… 

We even went on a walking tour through London where every step up or down the pavement either one of them, or my girlfriend had to tell me, “no, it looks like there is a step, but there isn’t..” or “watch out.. pot hole” or “careful… STEP!!!”

Pretty stressful for them to keep an eye on me, (i'm sure they rather be listening to what Jack the Ripper had been upto) pretty stressful and annoying for me, as I am fine!!!!!  (Well, I’m not of course… but as said, STUBBORN!!!!)

One of the last times someone came over was when my friend from Northampton visited with her boyfriend, our birthdays are in the same week and we try to meet up then if we can.. this was just a couple of days after the diagnosis, so I felt better mentally I guess, and had said yes to meeting up in London… after having had a nice late lunch we ended up walking around a bit in the evening darkness of London and when we hit Trafalgar square I almost SH*T myself… these massive steps had turned into a massive slope and I could not see where the steps went down into the next, and it was full off people and lights!!!!!

Almost there and then I felt an attack heading towards me, but again…. I just kept going, being stubborn

Not letting my friends (people that obviously care about me ) know I’m not cool , I’m not doing well, I’m not as cheerful as I’m making out to be…..

(although, this time around, I did indicate to my girlfriend I needed her to hold my arm and help me..)

 The things is, these are the people you should be able to let loose with and tell that your aren’t good, and that your aren’t doing that well… so why didn’t I?

Pride? Ego? Always the “Carer”, never the “Cared for”?

I don’t really know… in the last case it probably was down to, “oh it’s getting better now since I know what it is …” so I wanted to keep a brave face… then again, I wanted to do that the other times as well.

What I have determined is that, although I think I can consider myself a pretty sociable person, in certain situations I appear to be a loner,

For instance, I tend not to do “Man Flu”.

(anyone that knows me and wants to contest this, please leave a comment (-: )

When I get a heavy cold, or “Flu-y” I just get on with it, hole up in bed if needs be, take my meds, take my juice, and deal with it in a pragmatic practical way..  and I don’t go “oh look at me I feel so rubbish, please feel sorry for me “

I don’t need anyone to nurse me, I’ll do it myself…

Pretty similar to what I just described above I guess… 

This is also the same reason why I probably, in hindsight, left it too long before seeing a doctor with regards to my vision issues, or with regards to being depressed, or why I drove a car much longer then really was safe… or because it took so long before I accepted using a cane when needed…

Too bloody independent, when I shouldn’t be.

Well, that is unfortunately still an issue, I still want to do things myself, and in 97% of my daily life I do….. but I have started to accept that I will have to depend more on people when I want this to work.

As yes, (at time of writing - November 2012) I have come a long way, but I still have moments where , on occasions, someone does need to hold my elbow to walk down steps, or read something from a menu or scout for potholes, drive me somewhere. 

Even if the next moment I can do all these things again without a problem, I will always still need, on occasions, some form of help, support, friendship. People that care…..

And you know what, I have noticed that i shouldn't make such a fuzz out of it, over the last couple of months i have noticed that old friends, new friends, colleagues  family, they all look out for me, not caring if i asked or not.. just spotting steps and drops, and tables that I apparently didn't... so yeah,  that’s actually not a bad thing, being able to accept your friends help.If anything its better then waking up in the morning and wondering whre that bruise on your arm just came from.

In fact, I wish I had put my pride aside last Saturday evening at a restaurant  where I had dinner with a friend.

There where 2 rice dishes with similar names, right below each other, and I knew my eyes were playing tricks on me, but still proceeded ordering, and ended being served with possibly the spiciest dish on the menu...i was on fire, but pretended not to be.... 

As for my friend? she just smiled at me with a look that said.. "you idiot, why didn't you ask me for help?" 

Weirdly, those are things I DO see... 

January 2012 – So, what now?

So, I had the diagnosis, but what now?

As mentioned, Dr Gillespie at the Royal Eye Unit in Kingston upon Thames, had finally been able to determine that my problem was a degenerative eye disorder called  Keratoconus, but what does that mean? 

What lies ahead? What can be done? Will I go blind?

Ok, to answer that last question, there is always a possibility that that is the case, but that’s a long journey away before that happens, having said that my right eye is apparently very close to being officially classed as legally blind… but that doesn’t mean “darkness” blind, just no able to see shit properly

So, what can be done?

Not a lot really…

Having said that, there are a couple of options, and it depends on how severe your situation is.

The ultimate option is a Corneal transplant, but as I was explained, this only will happen if your cornea is that damaged that there isn’t another option (keep in mind, these are my findings, from what I was told by the experts at that stage, opinions vary and change every week on this)

As KC only had been developing for a short while in me, my cornea was still fine-ish, it was just my vision that was bust….

There are other options as well, and I’m afraid I’m going to take the easy way out here, and refer you the plethora of other blogs out there, as in my own experience I have found many other blogs and sites explaining these options, far much better than I ever can… see some of the links I’ve listed on the right side of the page.

For me, for now, it seems the only option forward was contacts… well that’s easy you say… yeah, well hold on, no it isn’t…. its not like you just walk into Specsavers or Boots opticians and ask for a couple of dailies…. this is a bit more specialised.  

In fact I ended up with contacts that cost approx. £500 a set, and they need replacing every 8/9months… and better get back-ups, because if you lose one, well…

Can it be cured?

Nope, it’s degenerative, and will only get worse…

Can I pass it on to children?

Don’t know for sure, I’ve read different reports on this, some say yes, some say no…rest assured, if the time is there for me to having to look more closer into this, I will hopefully find a definite answer..

What Causes it?

Again, not really sure, there are different reports on that as well, once that mention it just happens, others that suggest lack of certain minerals in the body, other that suggest it’s down to rubbing your eyes early on in life… (I personally don’t put much value in the last one…)

Will I be able to enter back into a decent social and work life again?

Yes!!!

Well, I did..... Was it easy? No, it was a bit of a journey for sure, but I did…..

In  fact, keep an eye out on posts of that journey itself… full of its ups and downs.. but those up and downs are worth it.

Do I wake up every so often thinking, where did I get that bruise from, for sure, but hey, they are worth it and tell a story….

Then again, I also wake up every so often think, "wow, a year ago, i was lying in bed depressed and not being able to walk around properly because i was bumping in to things or tripping over things all the time...and now i'm here...already. " WOW 

I mean, there’s a reason the sub-header of this blog reads: "Stumbling through life,(sometimes quite literally)"

Depression is a bitch..

She is, she really is…….

I can happily say that I’ve knocked it on the head, but back in Winter 2011/2012 I had it bad… I just couldn't see the light at the end of the tunnel with my eye sight…(yep, pun intended)

It just kept me down so much, I would not leave my bed, let alone the flat, I wouldn't even be interested in listening  to the radio, or podcast, I would just lie there in my little “visual prison cell”….and think… think a lot… spending way too much time in my own head, and I ended  up not really liking myself for a while.. and that’s tough…

I've always been loud, argumentative, “full- on”, cynical, sarcastic, opinionated, and stubborn, a “drama queen” even, (amongst many other  flaws). Which can be seen as very annoying habits, however, one thing that I think saved me from being “annoying” is that at least in everything I did I was genuine… (otherwise I really don’t know how I ended up with such good friends in the first place) and if I was all those things previously mentioned, it was because I cared, either about the subject, or the person…. to me it always came down to caring.. and I stopped caring, and then you are just left with an obnoxious person.

As mentioned before , I have seen depression before in others close to me, and it hurt seeing  them like that.(I can only imagine how my then girlfriend felt.. it must have been so tough on her)  the trouble is people that suffer from this don’t realise themselves that they are in that place, untill you are already way in… just like I didn’t either, but once I finally owned up to the problem, it was hard, but I was able to climb out of the hole….

Like I’ve said in a previous post, I didn't want to go down the chemical route to start off with , so my GP had suggested I’d take “St John wort” and “Evening Primrose” tablets to start off with, (on top of that a friend had also recommended “cod liver oil”, which the GP said was ok to combine aswell) she also wanted me to exercise more, (releases endorphin's which makes you feel better ) which wasn't such a bad idea anyway I guess, as I, although i've never been a slim person, had ballooned to about 125kg… but the last time I was able to make it to the gym it almost finished in a panic attack, so that was a no go for that… but I did get a stationary bike to cycle on every day. and as said, she suggested I’d write things down.. to get it out of my system, and  that worked pretty well I guess, seeing that you are reading some of the result of that.

Needless to say I did end up crawling out of that black hole, either because all the previously mentioned  things worked, or also because finally there was light at the end of the tunnel ,as I finally knew what was wrong, so I finally had some grip on what was happening and what could be done about it…

I don’t know, I genuinely don’t, as although all was looking up, certain things went wrong as well, my relationship with my girlfriend ended after 4yrs, I had stress about returning back to work etc (more to come on that later)

Bottom line is I came out on top, and it feels great

Question remains, have I changed? As, as said, I had grown to not like myself very much… 

Well....yes, I have changed… I have learned to trust my gut even more, I approach things even more pragmatic than I used to do,  I’ve learned to live with what my disorder limits me in doing, by circumnavigating it, and concentrating on what I definitely can do, instead of letting it limit me.   

Have my habits changed?

No.. I’m still loud, argumentative, “full- on”, cynical, sarcastic, opinionated, and stubborn, and yes, still a drama queen.. (Sometimes I think it’s gotten worse even…)but always, always with the best intentions…

In a conversation I had with a friend the other day on this, she admitted that although it frequently annoys the shit out of her…. she secretly loves it as well.

As said, in my opinion, I’m all of this, because I care, and I am convinced that therein lies the difference, and in a way, I think it makes me a better person, at the same time that could be full-on self-delusion of course, and maybe I should go back and get some more meds…

January 2012 – The Final Results - KERATOCONUS

 Test done in December and here I am, in the Specialists office again to get my official diagnoses, and no, its not a disorder called “Kerry Katona”, but a de-generative corneal disorder called keratoconus

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002008/

which in short means that  the normally “ping pong ball” shaped eye re-shapes the front of the eyes into a “rugby ball shape”, via corneal thinning.

This results in significant visual impairment like distortion, multiple images, streaking, ghosting and sensitivity to light and many other issues. In some cases this can lead to drastic situations as full blindness, but apparently I’m still far away from that.

Many different sources quote different statistics on how many people have the disorder, but it comes to about 30k people in the UK only, that on approx 63 million people living in the uk put things in a pretty fun perspective.

The disease predominantly occurs in the “Teen” or “Twenty” years, and I got diagnosed a week before my 36^th, so sort of out of the target area I guess, on top of that It seems that my eyes have thrown me another curve ball, as my “conus” is nipple shaped, a fairly rare form of KC according to my specialist.  Al off this is ofcourse no surprise to me, as my parents have always told I’m a bit special anyway.. although they might have meant something else with that (-:

December 2011 – More Doctors 2

Finally the day  is here, I’m getting my second opinion.

I run the story of the last year by the new ophthalmic specialist sitting in front of me, and he gets started on some tests, and after a while says, “well, I do need to do some more tests, that you will have to come back for, so nothing is for certain untill then,  but I think I know what it is…. “

And I go in a daze…. “Blah blah blah, conic shape of the cornea, blah blah, light reflecting back.. Kerry Katona…(really? Did he just say that? ) blah blah blah…  but you wil have to come back next week for these tests and  then me and my colleague will have a clearer picture of what’s going on, the test is next week, 4 days before Christmas, so if you then book a return visit for the 10th of January, will that work?"

Yes please….

December 2011 - More Doctors 1

Now, I had 2 things to deal with, a massive mental black hole, and still figuring out what was wrong with my eyes.

I had manged to secure an appointment at the Royal Eye hospital in Kingston on Thames and was to meet there for further diagnosis. and earlier that week I was sitting in my GP's office talking about how down i was, about my panic attacks and all the shit that was going on...  that wasn't as easy as i had thought, its all about Ego's again i guess, admitting there is an issue...

The thing was that it wasn't me that raised the subject anyway, I had to visit every month to get a official note to say i'm still not fit enough to return to work, and she of-course knew what had been going on, so all out of the blue, she goes "so how is everything else?"

Eh, what?

"well, how are you coping? this situation must be driving you up the wall?"

Well, funny you mention it, but eh..... and it just all poured out...

Afterwards she advised me to start writing things down about was bothering me.. (kinda tricky ofcourse when that isn't your strongest point at present, however, I made it work) ) and that we first would try herbal meds instead of going into full-on chemical warfare.. i've seen what this could do to others, and wanted to try without first.

one step in the right direction again....