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....

Panic attacks

Yep, panic attacks.

Wikipedia describes it like this: "Panic attacks are periods of intense fear or apprehension that are of sudden onset and of variable duration of minutes to hours"

I'd never had one in my life, i've seen my fair share of them, but never experienced them..but hey, this journey was full of surprises in the first place anyway...

In hindsight, i'd probably had been close to one a couple of times over the last couple of months... one time when we had friends over from Edinburgh and we had ventured into a massive department shop, and all the lights and sounds were hitting me senses and on top of that I had sort of lost sight of them pretty early on. but i kept rational  and just walked to the entrance off the shop figuring that at some point they would have to come this way anyway... which they did.

Once I had made my way to the gym with my girlfriend, as initially I figured some swimming might not be a bad idea, but then after the sinus surgery i figured, maybe a stationary bike might be a better idea...she helped me to the bike and off I went...  again, I got hit by an overload of attack on my senses.... too much blinding light, too much (amplified) noise... luckily I felt it coming, and just stopped, sort of worked my way back to the locker rooms,and just sat for a while...

Now these might already be categorised as panic attacks, I really don't know... but what I do know is that this was nothing compared with when suddenly out of the blue at our apartment i had a proper one... not triggered by lights, or sounds, just... emotions....fear, worries, whatever you want to call it...

I was going through my previously mentioned daily routine, listening to talk radio, and there must've have been someone on there talking about not having a job or something along those lines, and it must have gotten into my head that that could be a possible future for me as well, loosing my sight (at this stage i still did not know what the problem was) and the implication that would have.. work wise, life wise, relations wise... and on and on ... its just stacked on top of each other.
Suddenly I found myself shaking uncontrollably  crying like there was no tomorrow, breathless wheezing, dizzyness and what else.... about 20 minutes later I came back to my senses and found myself sitting cowering in the corner of our bathroom...exhausted... so i went to bed in the hope to sleep it off. and i did... so much that i didn't even tell my girlfriend about it, in fact, i've never told anyone the severity of it until now....

After that i had another 2 attacks, which luckily were the last ones, but the good thing is that it made me realise i had slipped into a wrong frame of mind, and maybe it was time to go and seek help...

Baking

One of my favorite things to do is cooking. 

Thing is, when you can't chop carrots or meat in fear of losing a finger tip, things get slightly difficult to do this as a past time, that's not to say I didn't on occasions just risk it, as it just so relaxing, and in a way it allowed me to just "zone out". 

I guess that in the light of things i just thought, "screw it, a cut or a burn is worth it".

To be honest, im not to sure that at that point my girlfriend was very happy with me, as even with all the effort in the world, i would not be able to  properly see what I had made dirty, and what I had cleaned proper . (hey, at least she got some food out of it no?)

So, I can only imagine how she must have felt when I suddenly decided i'd try baking, as in a way all I needed was my hands and some baking trays. not a lot of knife (well, that's what i told her anyway :-) )

they flour and crumbs must have been everywhere... 

Surprisingly this was something i really enjoyed and actually really relaxed me, but as you can see on the pix below... pretty they weren't, then again, I have an vision issue remember....

Work and not being there…..

I went on sick leave the first week of August 2011, and only went back to work in April 2012,

8 months of not working and spending waaaay too much time with myself

But, where do I stand rights wise actually? 

I mean, my work has been brilliant really, they paid my wage every month, no hassle, and after a visit to the citizens advice bureau I found that in fact they didn't have to do that at all, they could just pay less after a couple of months and after 6 months, well, then it could be just as well via the benefits system… so to me they were fine. Very fair indeed.

But, it’s added stress.

I contacted them at least once a month with an update. but imidiate manager told  me at a later stage that maybe I should’ve called more often, but at the same time he  also understood that especially in November/ December when everything went a bit “dark” that I wasn’t in the best state of minds for any communications.

When I finally did go back to work, it surfaced that I was way to stressed and in my head about the return itself, but more of that later…

Cane

"I fought in the war you know...."

Really? I know there's something wrong with my eyes, but surely you haven't? 

Well, maybe its the Falklands you are talking about....

Anyway,  this is a lady in her 60's who's shouting at me in a full bus about the fact  that a seemingly healthy young man is not standing up for her so she can sit...

I would, but unfortunately i'd probably fall flat on my face quite soon, as I cant anticipate what the driver is doing anymore, in fact public transport has become a bit scary for me... and going to the shops, and walking down the stairs, or on the pavement... or...

"Hun, is it weird i'm thinking of getting a a cane?" My girlfriend looks at me, quite emotional (I think).. I mean, its difficult to gage lately due to my.. well , you know... but she gets it, and I finally get it aswell...

I've been walking into things, i've had people walking into me, as i just didn't move quick enough or whatever... i've come close to panic attacks in shops due to the lights there, and my over sensitivity to light in the first place..not being able to find my girlfriend back in the shopping isle is pretty distressing, or the od time I did venture out to meet with friends, and ended up in a shop it just became all too much.. overflood of lights, and (its true, eyes go, hearing goes up) overkill of sounds... so I just had to put my pride aside and get a cane for my own protection.

So I did, and you know what, no more people shouting at you, or bumping into you is lush.... it just shows that Ego's are just that Ego's... and they limit you... 

This cane has become my daily companion, even now things have returned to normal status of me managing what is wrong with me.. and I normally do not need it. but sometimes a lens hurts, you have to take it out, and guess what, you are "blind" again, well its bloody handy to have it then... its just good i can fold it whenever needed and fits quite well in my Man bag that i need with me because of my lenses and lens fluids etc anyway..

Anyway, here she is, my friend "the cane".

Friends

Friends are awesome….

They say you’ll get to know who your friends are when things are hard, well… I ended up having more friends than I thought I had then… well, sort off…

Over the years I’ve gathered a solid "core" of really really good and close friends, and they stayed in that core, encouraging me when I was down,  telling me that things would work out, visiting me over time, walking with me, looking out for steps, drops, potholes and all that stuff,  calling me, emailing & “Facebooking” me.. (yeah, I know I couldn’t see…. but that’s why zoom is invented on browsers)

I suppose that this is where “Karma” comes in a bit, as at other times I’d like to think I (would) have done similar to, for and with those same friends…

Interestingly though, I got a lot of support from what a lot of people call Facebook “friends”. People (and family ) that aren't really your friends, but who over the years have walked in and out of my life, but somehow via facebook they all came together.

I had taken to posting regular updates after Doctors visits, my Surgery or anything else that was happening, and gotten so much heartening support out of it , ranging from the US, to Australia, to All over Europe..

It was so heartening that sometimes I just felt bad if I felt down again, as let’s face it, how can you feel down with all this support…

So yeah, Friends (and family) rock… 

My life has slightly moved on over the last 9 months, and a big chunk of my personal life/ situation has changed.. (no doubt more about that in another post) but one thing I’m very grateful for is that in this new situation  I seem to have met at least 1, if not 2 more people who seems to have come part of that  “core” who obviously weren't there during  the “blurry” times, but seem to have been fairly involved with the “aftercare”

Will they really end up being part of that "core"? Time will tell....

November 2011 – The aftermath

So, I’ve had surgery, been taken home, my mum flew over from Holland to nurse me for a couple of days ( very nice of her, especially if you keep in mind that week was my parents 40^th wedding anniversary) and there I am, bandages off, no more headaches, (yes!!!!)  a bout of labyrinthitis.. (yeah, look that one up if you want) and still no clearer vision, in fact, I was  pretty sure it got worse…

As mentioned, I had been taking  3 tramadol tablets a day  for the last 3 months, and discovered in the hospital that that was kind of extreme according to the nurses there, who were just about to tell me all about tramadol to give to me after my surgery… when I told them I’ve had boxes of the stuff at home… (interesting)

As my headaches did seem to have disappeared I figured I tried kicking the tramadol’s as well as soon as possible then.. and straight away I reduced my daily intake to 1 tablet a day, and that seems to work, so within a week I was off them completely.

Then I suddenly realised I was way more “there” and although I had already spent a lot of time “in my head” over the previous months, this was slightly worse.. as, as said, everything was clearer (except my vision of course)

After the initial shock of realising of how much I must’ve been “out of it” in a way for these last past months,  I found myself getting very irritated and depressed with the overall progress of trying to find out what was going on.

My Ocular specialist had, from the start, not really taken me serious I felt, and after 2/3times telling me its something it was not, and then telling me, oh after your sinus surgery you will already see so much better… which wasn’t the case .

I figured enough is enough and I went looking for the famous 2nd opinion… 

November 2011 - Surgery 3

“Hi… how are you?”

There’s this woman hovering over my bed and i'm trying to focus on if I know her or not?

She’s not got a French accent, so it’s not my girlfriend.. ok, has to be the nurse then…

Eh,,, (kinda groggy), I think I’m ok… eh, where?, eh, I mean how? …

“All went fine Marco, the surgeon was very happy with the whole procedure, but he will come and see you in the morning and tell you all about it… “

Ok…

So, now trying to figure out how things have gone myself, I can still see like shit, and my head is still banging, on top off that my nose is filled up with loads of fluffy white stuff… oh well, better go back to sleep then.

"Hi, How are you?" 

This time there’s no doubt about it, that’s my girlfriend.

 I must have slept for a while now, as i think it must be around 10pm orso,,,

Eh, dunno really.. everything hurts and I just want to sleep, but they say it went well..

"Hi, How are you?"

It’s my girlfriend again, but it's daylight now, (has she been here all night? Surely not? ) 

One thing is for sure, I can still see like shit.. DAMN…

The headaches seem less though, just a shame my nose hurts like hell…

November 2011 – Surgery 2

Finally arrived at the Hospital, and I got taken through to my room, where it emerged that due to the rushing around to get to the hospital my blood pressure was way t high for surgery… no kidding…

Anyway, once all was sorted, my blood pressure was low enough, I had empty my blather more then enough, I was wheeled in.

Kinda nervous, kinda cheerful . I mean, if all went well, those nasty headaches that had been tormenting me for the last 3/4 months would finally be gone, and more importantly, with a bit of luck I could see clearly again…. Yey…

“Hi Marco how are you? “ its was “sinus guy”  “Are you all ready to go then?”  Yep, go and do what you do I guess, hope all goes well…

“Ok, well this is Antonio, he is in charge of the anesthetics and will help you to go under for a while….”

Great!!! Hi, Antonio, nice to meet y……….

November 2011 – Surgery 1

We are in a taxi rushing to the hospital…

Not because there is an emergency, nah, apparently me and my oh so fantastic eyesight had miss-read the time I had to be at the hospital.

Actually, in all honesty, I hadn’t read it at all. I remembered clearly that the consultants secretary said 15.30 registration,17:30 surgery…And when the letter of confirmation arrived I didn’t read it again to confirm…

So at 13:30 on a breezy November Monday, my phone went….. “Hi, is this Marco?”

Yeah?!?  

“well it’s the hospital here, we are sort of wondering where you are, as you were  meant to register round about now.. to go into surgery at 15:30…”

Eh, ok… (SHIT!!!!!!!!!) We are just waiting for the bus right now.. but I’ll go and call a taxi instead then I guess…  See you soon.

Podcasts…

As mentioned previously, in a case of being on sickleave, due to your eyes, there isn't a lot of reading or telly watching you can do…

Granted, my girlfriend and I did keep up with our regular shows, but to say I could see it, was a very big stretch, I was looking at flickering box with sound coming out of it really, but hey, it kept me sane I guess..

However, that only really covers evening time in a way.

What to do during the day?

Well, my routine seemed to have been..

Hear my girlfriends alarm go off about 12times before she would get up… hear her rush around for about 20minutes, and when she goes off to work, I slumber back to sleep for another hour orso..

Once up, its time for a coffee and a home-made drink yoghurt, then Dutch radio for an hour or 2, then a stream of a daily Dutch TV programs that kept me sort of updated with what was happening in the homeland.(again, all i could do is listen)  then BBC 5 Live or LBC for another couple of hours…  yeah, talk radio suddenly becomes fun.

Then, depending on my mood there might be a couple of chapters of an audio book aswell.

And that was basically what it was until my girlfriend came back from work…

Going back to "listening to stuff" though, at some point, I discovered “podcasts” .

I had come across them before of course, but never really got into it.. but now, having had all the time in the world really, I figured why not?

I had been listening to Richard Bacon's show on BBC radio 5 Live, and there was a mention of the daily podcast of the show, so I ventured out looking at this, (with the settings of my browser set to 200% to just see a bit of what I was looking for..) and when I found it, I discovered a whole treasure trove of BBC programs to listen to, which I promptly downloaded and got myself occupied with some really good interviews.

From this I came across some other brilliant Dutch and English language podcasts, either made for podcast or extracts from proper radio shows.

The one podcast that was my sole companion for a long long time since then, and probably kept me saner for a bit longer during this whole situation,  was the weekly podcasts of radio duo, Simon Mayo and Mark Kermode, 2 middle aged men that bicker like a married couple over movies…

If this premise does not do anything for you, I urge you to look it up,and try it anyway, as I got addicted, and I was able to find a back-catalogue  going as far back as 2005.

These 2 know what they are talking about when talking movies, but more importantly are just very (un-intentially) funny along the way.. it provided me with loads of (much needed ) entertainment and laughs, and a list of movies to go watch (again) once my eyes were back on track…

http://www.bbc.co.uk/podcasts/series/kermode

A more clearer look at my not so clear sight..

So, besides of the headaches, (which seems to be the cause of the sinus issues anyway… ) what is now the problem actually?

Well, as mentioned before, it’s a bit like looking at a 3D movie without the 3D Glasses but then very very close up…

However there’s more.

·       Some days it feels like someone has spread Vaseline on my eyes and its like this thick greasy fog I’m trying to look through. (try and “blindfold” yourself with a layer or 2 of clingwrap)

·  “Wiped face Syndrome” -sometimes I see figures and shapes, but people’s faces (up close) are like someone has taken a black board eraser and made circular movements to wipe their face into a smudge… the first couple of times I thought I was hallucinating – this is acceptable when you don’t know the person but highly upsetting and disturbing when it’s your loved ones, I’ve had times I could not even recognise my own mother.

• 
  

·         Depth issues - not seeing where the next step on a stair case or pavement is, in fact, a stairs becomes “Ski- Slope” like..(where this could lead to interesting situations, I’m afraid I’d be more Eddie “the eagle” Edwards than Kazuyoshi Funakia)

·         Width issues, walking into table corners, shelve corners, door frames etc – bruises everywhere …

·         “Ghosting” - thinking that a table top, to put a glass on, starts at a certain point, where in fact you are still inches away from it… (this has cost me quite a couple of glasses, cups and plates, and caused plenty of frustration) or, for a bigger adreniline kick.. .cooking and cutting up veggies or meat… where does the carrot end and my finger s start??

The thing is, there’s probably more, but I’m sure you can already see (pun intended) that it all comes down to the same dis-orientating situation in the first place.  

Over time I found that I had days where I could cope with it pretty well, and even ventured out to the shops for groceries or even further, on my own.. (More on that later), then there were other days where I was so depressed, disorientated (and basically scared to shit) that I would not even leave the bed or flat. (more on that later aswell.)

In any case at least I finally had an excuse for not being able to wash the dishes properly…. (-:

Pills n Thrills

One of the things you tend to do when you are on sickleave is read or watch telly...
Just a few things i couldn't really do anymore ....

Initially i resorted to one of my favorite past times, listening to music a lot. .. and for a while Spotify  and my CD collection (especially the latest live performance recording of Counting Crows's August and everything after) were my dearest friends, but that did get slightly boring after a while, so I  decided to switch to audiobooks and give that a try....

Now, remember I was taking 3 Tramadol's a day for my headaches, and although you think you're fine and know exactly what you are doing when you are on these pills ....you are not.... (in fact I was told months later of things that had happened which still to this day I have no recollection off )

However, as said I was ready to tackle audiobooks,  and out of anything I could've started with. I started with the ,Millennium Trilogy' (the girl with the dragon tattoo etc)

I'll admit they aren't high quality literature,  but to me it ended up being one of the most intense "reading" experiences I've ever had....and its save to say that I now have a bit of a soft spot for them now... I think I went through the whole trilogy in the space of 5 days,re-living the books at night in my sleep... well, same characters, different stories ... the thing about those books are already that a lot of stuff happens to a lot of people , and I basically had the whole experience amplified by my opiate intake .....

Sometimes being on sickleave isn't all bad I guess ....

I wonder how this would have been when it would've been this years reading sensation "50-shades" though.......

October 2011 - "Sinus Guy"

Yet another specialist office… what will this bring?

During my quest to figure out what, In fact, was wrong with my eyes, I had visited one Specialist at least 5 times now in the space of about 7 months , and still wasn’t much closer to the root of the problem, so it was fair to say I didn't have much fate this time around as to what was going to happen,..

I couldn't have been more wrong….

Only 10 minutes after I entered the waiting room I was invited into the office of my ENT (Ear, Nose and Throat) consultant..

Within a couple of minutes he had established that there definitely was an issues here..

“We need to do another scan Marco, (I had tried to get copies from my the MRI scan results to hurry things along but had been unsuccessful in getting this..) but I’m sure it is your sinuses, I just can’t see the extent of it yet…  “

Great, I thought, more back and forth calling and scheduling. …

“So eh, what’s your plans for the rest of today?”

Sorry? What?

“What are your plans? I am going to my next clinic in 5 minutes, we have a state of the art scanner there, and we can put things in motion straight away… “

Eh?  Ok.. as in right now? Ok, so how do I get there?

“Well, just jump in the car with me, I’ll call them now to set up the scan, I’ll drop you off, and afterwards come to the waiting area outside my office with the results, see my secretary, and we will take it from there”

There I was, 45 minutes later, getting up from yet another scan of my head.. slightly different than the last time, but still, this is becoming fun now.

and at least it appears that I do have brains inside my head, so my parents can finally relax…

20 minutes later i'm sitting in front of "Sinus Guy" again....

“Ok, what we need to do is as follows, we need to schedule you as soon as possible for a FESS procedure…”

You what? Fes?

“FESS Surgery,  Functional endoscopic sinus surgery, this is by going inside your nose with a small camera and suction device  and suck out all the “gue”  from the sinuses behind your forehead, Nose and Cheeks and cut away hazardous polyps etc … “

Ok...Why did I ask in the first place?

"How does 3 weeks from now work for you?"

Eh.. yeah, ok, well its not like ive got anything planned or anything...

"Ok, see you on Nov 7th then..."

WTF just happened... i just went in for a consultation in the hope to get a bit closer to being able to put all of this behind me, and instead of taking this step by step and weeks to cover all of this, i'm actually booked in for surgery already... ehhhh? 

I'd blame it on the wonders of private healthcare, but in all honesty i'm seeing the eye consultant via my private heretical plan as well... how could this be so different from the other? 

Oh well, one step closer yet again..