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..

September 2011 - Results

"Right.. here's the deal Marco"

I'm sitting in my specialist office for the 5th time this year and finally I’m getting some answers..

After a botch attempt of fobbing me of with "A Tired Squint" , a couple of visits to a MRI machine, I’m finally going to find out what the freaking problem is...

" We think you have something that is called Ocular Motility"

(THINK??? Really, still don’t KNOW but think???? Then again, it’s not the worst case scenario that went through my and some of my close friends and relatives head i guess..)

Oh, ok.. so what does that mean I ask?

"Well, basically it has to do with the muscles that control the movement of your eyes.. and in your case it seems that they don’t really do a good job in controlling them.. in fact I would go as far as calling this SEVERE Ocular Motility.. "

Ok, so, what do we do next I ask?

"Well, in certain cases it is managed by injecting silicone into the muscles.

(hold up, what??? )

but there is something else we need to tackle first... "

Eh?

"The MRI Scan has shown that all your Sinuses are completely blocked.. we think that this causes the headaches and also puts pressure on the Ocular Muscles.. you will need to have surgery for this first before we can do anymore work on your eyes."

Ok, but then after that the SILICONE INJECTIONS?????

"Yes, highly likely... but at the same time, you will find already that your sight improves when the pressure is relieved...."

Ok... well, let’s get on the phone to a "Sinus guy" then i guess... 

August 2011 - MRI 3

2nd try,

I was given some sedatives to take 2hrs before, and although I’m still pretty sure they didn't work, my Girlfriend said it was kind of hilarious to see me like this… oh well, more fun for her.

At the same time, I already been taking 3 Tramadol a day for the last month orso for the 24hr headaches…so to say I was really  “all there” might not be fair either. plus.. keep in mind my view into the world is already like this.... (-:

In any case, whatever happened, the drugs, or just me knowing what to expect, it was over in a jiffy, and it was now just waiting for the results.

August 2011 - MRI 2

So, there I am, standing outside a MRI machine in a TRAILER!!!!!!

Wow, if I wasn't slightly stressed, I was now… what do you mean I have to go to the back of the Hospital car-park?

I'm not stupid I understand that for budgetary reasons these things go from hospital to hospital, but still I think I would've been more relaxed if it just would have been in a standard wing inside the hospital, but hey, you cant get everything I guess..

Not really sure what to expect (despite a bit of research via google)I end up entering the trailer and get guided to this massive machine that is going to look at my brain via magnetic resonance technique… 

No biggie, I've seen “House MD” plenty of times, but eh, wtf, they never showed that your head is sort of in this brace and that you can’t move and that its actually pretty up close and…. Fuck..

No less than a minute later i'm standing next to the machine and they haven’t even started yet… 

“No problem Sir, you just had a claustrophobic reaction, it happens all the time…”

Claustrophobic? I’m not claustrophobic, never been before in any case.. I’m just pissed off with myself for slightly panicking when I realised it was a bit too up close… yep.. Claustrophobic…

So I end up having to come back and try again… yey.

August 2011 - MRI 1

“Yes, I know, there is a chance this hasn’t got anything to do with my eyes hun, I know what this could mean instead, but eh, shall we just table that until the test has been?”

My girlfriend figured that it was quite worrying that basically 3 days after having seen the specialist I had a MRI lined up, and more worryingly she’d be in France for those days to see her family, and not there to be there with me

She’s right though, it did slightly freak me out:

• No clue as to what was causing the blurry vision and the headaches 
• A Specialist who was a little bit vague to say the least, 
• and then slowly over thinking the other options, gets you to places you don’t really want to go.

Then again, whatever it ends up being, I’ll just have to deal with it, as that’s all you can do really.

August 2011 - Blurry!!

“Ok, go and contact your GP, let them give you a sick-note and go and get well, there is nothing else to it... don’t worry about it, just get well…”

And with that a 6/7 month period of uncertainty started….

So, I had to call my boss and tell him, “sorry Allan, I can’t see properly anymore and my headaches are getting too heavy to even have a proper conversation over the phone with a client” (I had just spoken to a client and I hope she knew what I was talking about as I definitely didn't have a clue for sure….)

What my issue was is that over the previous 9/10months orso, my vision had started to get blurry.

Blurry?

Well, imagine watching a 3D movie without the glasses, or when you see a “mirage” on a hot asphalt road, where you see a car reflected going “downwards” … ad this together, and then with more distortion…(don't worry, i'll load some pix at a later stage for more clarification)

Anyway, all of this started in a mild form  all those months ago, with the feeling that there were “like little drops of water” in front of my cornea and it just got gradually worse.

Problem was, the specialist I initially ended up visiting said it had to do with a squint I had when I was a kid. “just come back in six months’ time and hopefully we can then see a difference that we can act upon…”

So I waited, and It  got worse, so bad that in reality driving became a danger, and the only way I could look at my work computer was by squinting my eyes close together …

As things got tougher I figured, well if I can’t have an earlier appointment, I’ll just get some glasses fitted in the meantime.

So I went and visited the optician, and that only freaked me out more, as he ended up pretty freaked out himself, because the results of any test he did didn’t make sense.. so he got me fast tracked to see the specialist again, this time he took me slightly more serious and spoke about brain scans ( as blurry Vision and headaches might be something else than a ocular problem… )

And that’s where we are now, waiting for that brain scan, whilst not being able to make sense to people, having constant headaches and seeing f-all….

oh well…..