Vietnam massive!

Upon saying goodbye to Laura and David I was planning on some earlier nights and less hungover days. This plan started off very well when I returned to Saigon. I treated myself to an Indian meal followed by some drinks with peeps from my hostel. Instead of getting on it I went for a pedicure and massage and was asleep by 11pm. For the first time in my drinking life I had a sober birthday.  Was this my new life as a 31 year old??? Am I finally going to take sensible advice from my consultant that reducing alcohol will be good for my health?

I won’t leave you guessing my birthday behavior was a blip…..a few hours after arriving at Dalat family hostel I had met the lovely Mark and Mo and was enjoying a large glass of Dalat Rum, followed by several beers… the rest of the evening is a bit of a blur. However I do remember having a very funny night screaming at a local Vietnemease rock band to sing Backstreet Boys. This became a bit of a theme of Vietnam and at every opportunity we sang Backstreet boys.


Everyone loves a waterpark?!

The next day I joined Mark, Mo and our regrettable hangovers  to Nah Trang. Extremely excited we got up early and made our way to VinPearl Waterpark where  we were joined by the crew below and had an amazing day.

image

10471492_846491899184_7316240214918142164_nThe slides were surprisingly amazing and we had a lot of laughs however one of the funniest moments of the day was in the sea. Being lazy we all headed to the sea for a wee rather than the 150 metres walk to the toilet. As the 8 of us walked into the sea  –  it was evident that we would be going for a group wee – this was probably pretty obvious to most of the people on the beach as we were all stood in a circle making sure that we were at least 10 metres apart. Surprisingly are explicit agreement of group wee was missed by Alberto….and as we were all doing our business Mark attempted to dare someone to put their head in the water. He didn’t get as far as shouting this as suddenly Alberto appears in the middle of the circle and jumps head first into the water shaking his face around. This was a bloody funny moment and poor Alberto was so unaware of the weeing session that he couldn’t understand why we were laughing. Even now when I think about this I cant help but laugh out loud and of course poor Alberto got just a little bit of stick! Sorry Alberto but I couldn’t not write about it.


The beautiful Hoi Ann

After a fab day I made my way to Hoi Ann and met up with the lovely Raegan, MJ, Shauna and Giadai. Little did I know that this was only half of their crew and I was soon introduced to Sia, David and Alexia on a lovely cycle to the local beach and a visit to the Marble Mountains.

11069856_846465472144_9202701846917609519_n

11072065_846699483184_8585339322794026699_n

                  11058576_846697432294_9010905479367134818_n

10424321_846739213564_8706683257299242438_n

hoi

  1743750_10153141001047726_149203793511512978_n  10429807_938255719540941_4367229674112525166_n

We were later joined by Mark and Mo and my favourite 18/19 year old’s the amazing Anna and Henry. Despite being 13 years older aghhhh – we got on amazingly well and I only wish I could have been quite so cool at their age…..and yes before anyone says it I know I am not now.


Hoi Ann to Hue on Motorbikes

The next day we all headed to Hue. Mj, Ragean and I made our way on motorbikes which was the most incredible day. Our lovely drivers looked after us extremely well over some crazy roads.

10438414_847327155324_1560029611127612632_n

10431560_847327499634_370077461954140939_n10452361_847328602424_1578295370822280609_n - Copy


Uncultured 2 days in Hue

Most of my time in Hue was spent at Hue Backpackers sleeping, eating or drinking. We had some fun nights though.

11069559_938255252874321_8692714731495070680_n - Copy

11083868_855885757786789_1090776696682226088_n

11069639_857564064285625_3819844641039599769_n

11082544_855885861120112_5099153991561761635_n



Crazy but incredible day in the caves of Phong Nha 

A group of us rented motorbikes and made our own way to the caves.  It started off so well but after an hour we got lost and then Henry’s motorbike broke down. 10271431_861373973904634_5043843923671572168_o (1)11081067_857564147618950_2694957496771680378_n
10420140_857564297618935_1214430322221190284_n

On the 1st try they bike guys couldn’t fix the bike so instead her pushed the bike with one leg while driving….only in Vietnam.

11080338_861374067237958_4656878791014068203_o

We then had to wait while they tried to fix it again so naturally it was beer o’clock while we waited.

11087799_861373953904636_8653424198974601032_o

11080506_861374113904620_4894127172427942277_o

After waiting what felt like forever the bike was fixed. Well we thought it was….15 minutes later it had broken down again. We eventually got to Paradise Cave but by the time we got there it was well after midday and we were worried that we wouldn’t have time to do the Dark cave so we then started to run to the cave which is about 3km. We looked pretty damn crazy and when we got to the cave we showed up very sweaty…..strange westerners!

10346522_10155402514295637_7840344362187303737_n         11084288_10153184053312743_5761316033157813470_n

Eventually we made it to the dark cave and I am so glad we did as it was AMAZING. We zip wired to the cave. As we walked further and further into the cave it became darker and muddier to the extent that when all our torches turned off you couldn’t see anyone because everyone was head to toe in mud. We then head to Kayak out….well I say we I relaxed whilst Henry did all the work. This was pretty damn good as it was just getting dusk and the sun was setting. We then rode back to the hostel with a group of about 50 other motorcyclists just in time to get fed and showered before we hopped on the night bus to Hanoi.

10349161_10155402514010637_3571444153843641082_n


Buffalo North Run                   

An amazing 5 days spent in the North of Vietnam. We started off in The Mai Chau Valley where we explored the area on motorbikes.

2015-03-24 08.34.55         P1030694

11103038_861374470571251_317170127557474197_o

We then made our way to the untouched mountain village of Mu Cang Chai exploring the area on foot.

2015-03-25 12.11.04   2015-03-25 13.04.20

2015-03-25 15.06.21

2015-03-25 11.06.56

Our last stop was in Sapa where we went mountain biking,, exploreed the local vilages and went to the Herbal Tea baths.

2015-03-26 16.47.54 2015-03-26 17.11.52

11076281_10155430961430637_8429791849094380221_n

2015-03-27 14.05.262015-03-27 14.07.43 (1)2015-03-27 14.10.01


Chaos at Castaway in Halong Bay 

I’m not sure what to say about the 3 days we spent at Castaway. It started off quite civilised with a few beers on the beach and my first time at wake boarding. I loved it but I was terrible, I managed to stand up once but was so excited that I did I forgot what else I had to do.

11079694_10152634662655940_3921385815374636892_n

The Beautiful Halong Bay

13912_10152994557026284_5266810792604534195_n (1)

As we sat enjoying the sun and the incredible views the group who came the day before arrived back from their booze cruise singing and screaming at the top of their longs…..they all looked a bit feral although clearly had a great time. Later the evening drinking games had begun, we played a big group card game and if you had a certain number you had to take part in random tasks such as kissing the bar man (lucky man) and racing to perform various sexual positions….culture at its best.

If you think these games are  bit extreme it had no comparison to some of the forfeits such as making guys get naked, shot gun a beer whilst having toilet roll up their bums which was then lit. I was determined to not have to do any forfeits. In hindsight I think I would have preferred a forfeit as while running to kiss the bar man (this was a task) a rather big guy stood on my foot. Despite this I was still in a desperate frenzy to not be the last one so I continued to run while he was stood there- not one of my best decisions. The good news is that I did not have to do a forfeit -the bad news is that I could not walk.

1958267_10155452765385637_4700094094369386489_n

As the evening went on the drinks were flowing – my foot felt much better…..was it a miracle??! No of course not – reality hit when I tried climbing out of the top bunk to go for a wee in the middle of the night. On my return to Hanoi I went for an xray and was told that I had two broken toes….doh!

I was gutted as it was our turn to become feral on the booze cruise. This didn’t stop me though…I even managed to go kayaking. Sia also had a drunken foot injury so we paired up in the disabled Kayak. Good job we were fast as Henry was in his kayak trying to capsize other people. Bloody 18 year olds…haha

18684_10152994554921284_2349526248858404390_n

11081262_10153174219727726_8396623109354133219_n

Luckily all my training at BMF sent hopping came in useful as I hopped around for the next few days. As a shit dancer it worked well for me as when you dance hopping style no-one can tell….in fact people were joining in

11138075_10153076488910141_7053828293471425641_n

Definitely the first and probably the last time anyone has ever copied my dance moves. I can’t complain really as for the next few days I had offers from handsome men to carry me.
11096489_861375783904453_4514279940168955639_o (1) 11087958_861375570571141_5607243162032725999_o 11010536_10153174209402726_2013105023025366859_n 11082631_10152994555201284_1364938253222825728_n

11083609_10152994555391284_900880974880758478_n


CONSTANT CATAPLEXY

As always for me laughing and fun is a trigger for my cataplexy which means you will often find me collapsed on the floor. During the trip to North Vietnam this was a frequent occurrence and at times I was paralyzed for large periods of time as I couldn’t stop laughing.

In the first couple days of meeting this lovely lot my cataplexy was fairly controlled with  only minor attacks such as the buckling of my knee and flickering of my eye lid. This is quite common when I meet people as I am more likely to have a cataplexy attack when I feel comfortable in a situation and when I have been drinking alcohol. Apparently by day 3 I was extremely comfortable as my cataplexy had taken a turn for the worse.  I had anticipated that this was going to happen at some point so I had told most people and they  knew what to expect but what I have learnt over the last 2 years is that describing it and actually seeing it is extremely different.  But amazingly again this lovely group of people took me and my narcolepsy in their stride and after 3 attacks they were always inn a position to help me and make sure I didn’t hurt myself. I have mentioned this in a previous blog but I continue to be overwhelmed with how amazing people are about it.

During the 3 weeks of travelling with this bunch my cataplexy attacks made a regular appearance often triggered  by Emily aka Mj who is probably one of the funniest people I have ever met.

There were so many funny cataplexy moments that I would need a book if I was going to write about them all but here is a few of my top 5. I have taken such a long time to write this blog that I have probably forgotten quite a few but these are the ones that firmly stick in my mind.

1). Falling to the floor in an alleyway on several occasions thanks to MJ’s story about her friend and toothpaste. Days after if Emily just mentioned the word tooth paste it would set me off. Problematic when we were brushing our teeth in the morning.

2). Mj and her face – now before I sound incredibly mean Emily is a hottie and it is not actually her face making me laugh but she is very witty and has great comical timing so every time I looked at her it reminded me of something funny that she had said previously.  I tried explaining this during a cataplexy attack….but I could only say as much as ‘your faa’….before collapsing to the ground again.  This happened  about 15 times in a row during a 20 minute wait for the bus. At one point she actually had to walk away from me as just looking at her made me collapse. 

3). Falling out of my sleeper bus seat -there was  a big group of us on the sleeper bus to Phong Nha and to be fair we were all being a bit rowdy. However for some reason an angry lady on the bus decided to pick on Henry saying how rude he was. Any what was so funny was that her main gripe was how unintelligent he is. Henry’s response was “I think that is the meanist thing that any has ever said to me”. Luckily I had moved to the lower bunk but within seconds I collapsed and was half laying in the aisle sit.

4).  Playing volleyball in the pool – I hit the ball with extreme force which made it pop out of the water and went through a hole in the wall. This was pure accident and I would never of been able to aim this on purpose. We all found this very funny and suddenly I had collapsed and heading to the bottom of the pool. Of course this is serious but for some weird reason when my cataplexy happens in the water I seem to find it even more funny. Luckily I had Mark to my rescue and he quickly lifted me up to take me out of the water. Mark was really worried about getting me out of the water as I continued to have a few more attacks, however I was more worried about my already lop sided bikini falling off. I decided to stay out of the pool to save my dignity and to stop me from drowning.

5). Why did the chicken cross the road? Yes this is ridiculous as it sounds….I won’t say any more about this.


SAD GOODBYE

I want to say a massive big thanks to all of the Vietnam crew as we had a an amazing few weeks but particularly for being so amazing with my crazy cataplexy outbursts. I have mentioned this in a previous post but I keep being so amazed by the kindness and support given to me by people I have just met. By the evening of the first day when most of these lovely lot saw my cataplexy they were always just there when I was about to collapse. Particularly Mark, Mo and Sia who I could always here giving instructions for someone else to watch my head. Every single person in our Vietnam massive was amazing and I  was always really touched when I could hear this lot explaining to others when I was in a collapsed state. One funny time was when I could hear Giada in her angry Spanish mode telling someone to leave me alone and that I was fine.

It was unbelievably sad saying goodbye to everyone but I am looking forward to some fun reunions potentially in London, Australlia or Holland.

11083868_855885757786789_1090776696682226088_n

11069616_10152760215506463_1599027281330333003_n

18212_857563607619004_7764807625269314113_n

603773_10155475668265637_7918058609747613761_n

Advertisements

Good morning Vietnam

After weeks of counting down I finally arrived in Vietnam to meet up with my lovely friends Laura and David. The plan was to meet in Nha Trang and travel to the South from there…..unfortunately due to a delayed flight, a long visa queue and falling asleep on the bus I missed my train and had to book a night bus later that evening. At the other end of the country Laura and David were having similar problems due to the Vietnamese New Year, Tet.

viet nah

We were all finally reunited in Nha Trang early the next morning at our hotel….to our surprise my cataplexy behaved itself and I stayed firmly on my feet when I first saw Laura and David, maybe I wasn’t happy to see them after all?? Only joking of course I was and we had a great 2 days in Nah Trang which first started with sun bathing on the beach,  followed by a crazy booze cruise.

V111017211_10155207077310104_6144796714715347983_o


The tour started off fairly civilised with sunbathing on the deck and jumping off the boat to cool down.

V2      fmm

We had anticipated a party day so we were slightly gutted when most of the other people on the boat did not seem quite the party type…..we were not the only ones to notice this and were soon invited to join the other boat and shunned upstairs by the staff to join the the other “young westerners”. This is where the madness began – the crazy but lovely tour guys kept encouraging / forcing us to drink beer (well maybe force wasn’t needed). They were all very excitable and would randomly shout out sayings such as “up the bum no babies” and “up the bum, don’t tell your Mum”.  The beers flowed well accompanied by a  delicious lunch and banter with our new friends.

V3

After lunch we were hurried downstairs to watch the  Funky Monkey boy band. It was pretty random but there voices were not bad and they were very entertaining.

bbfm

After a few well known songs it was our time to join in…..most people were dreading this. I on the other hand was looking forward to a good singsong.

After all the singsongs the music got turned up and everyone was dancing on the tables followed by free drinks at the floating bar. By floating bar I mean a man in a  float in the middle of the sea pouring out disgusting free shots – this wasn’t quite the bar we had expected but it was free and bloody hilarious!!

fm


After a lot of fun in the sun we were headed to Saigon on a nightbus. The night bus was an event in itself with our bus driver being probably the most angriest Vietnamese man I have met so far. We got on the bus and he started shouting at us because we were late….and that he was going to kill us but he eventually calmed down and started laughing hysterically.

After a 10 hour bus journey we arrived into the busy Saigon and spent a day exploring the city dodging the hundreds of motorbikes as we crossed the road.

V5V6

IMG_8083_1

In the afternoon we  visited the war remnants museum…..many photo’s with so many sad stories to tell.  We left feeling quite sombre and sad thinking about the brutality of the war and its many civilian victims but as we left we were soon uplifted by walking along the buzzing streets as the evening began.

8115593298_7142134edf

stock-footage-saigon-vietnam-may-nightlife-with-bars-and-pubs-pham-ngu-lao-street


The next day we headed to Can Tho in the Mekong Delta – while scoping the streets for somewhere to stay we were approached by a crazy smiley Vietnamese lady. Within minutes she had won me over and we soon followed her to her guest house…..luckily it was a bloody good decision and thanks to the lovely Ms Ha we had an incredible next few days.
10514690_10155229108480104_4704106698197840747_n    10957539_10155229108395104_1664253535302922582_n

V9

Ms Ha and her lovely assistant took us on her canoe along the river for sunrise and to go to the local market.

11036485_10155229111555104_6524370257864263794_n

If it wasn’t for the photo evidence I don’t think I would believe that the sunrise really looked like this….but it did. The whole morning was incredible…..made even better by Ms Ha who is a bloody funny lady.

V10

V7

 

10993434_10155203787860104_2968088035574221566_n

11021069_10155229111820104_1851084028575610075_n

By lunch time I was exhausted so my had my lunchtime nap on the boat joined by David who was also pretty shattered.

V12


In the afternoon we went on a epic 4 hour motorbike ride to the home of hundreds of storks at Banglang stork sanctuary.

V11

V13        11037890_10155229144110104_3079386269066960364_n The cutest lady who was desperate to have her photo taken


After an amazing but hectic few days we were off to Phu Quoc Island to relax on the beach.

V14

11041757_10155233091415104_4523220156675159887_n

With all the time to lay on the beach during the day it was time to party in the evening and celebrate David’s birthday.

1476576_10155229512570104_8646839520336237613_n

10347806_10155229969650104_8427983678561897064_n

There were lots of bars along the beach and the roadside but they were all pretty empty and quiet….untill we arrived that is! To our excitment we found a bar which allowed us to play our own music…..within the hour we were not only djing but behind the bar serving drinks too!

11051929_10155230224305104_8005468848328536691_n      11025158_10155345994650397_7445707941281689010_n

Drinks flowed well and we ended up at some underground bar with the locals dancing until the early hours of the morning. It was all going well until our American friend fell over and hit his head on the side of the bar. Miss Marshall came to the rescue and glued his head together whilst standing outside the bar. Good job she did as it would of been a taxi, boat and bus ride to the nearest hospital.

In the morning we were all horribly hungover…..so while Laura sunbathed on the beach myself and David died quietly in the room.

Up until this morning my cataplexy had been suprisingly well managed and I probably was only having 1 or 2 cataplexys a day. Which is very unsual when I am in the company of good funny friends.

Maybe Laura wasn’t so funny anymore?! Ironically my cataplexy has become my indicator to how funny someone is. However this is not a valid test as it hugely depends on whether I have been looking after my body. I often and easily forget the extent that my lifestyle has on my health….with no work stress, little alcohol and regular sleep my outbursts of cataplexy are relatively low.

BUT of course my friends are in Vietnam so I wasn’t going to be a party pooper……and after large volumes of alcohol was inhaled alongside minimal sleep it was only natural that the days to come were going to compose of me laughing so much that I collapsed. For those of you who are unfamilliar with Narcolepsy it is a rare neurological condition affecting the brain’s ability to regulate the sleep-wake cycle, which can cause a range of symptoms such as excessive sleepiness and cataplexy. Cataplexy attacks involve a temporary involuntary muscle weakness in response to emotions – for me this is always laughter.  The severity of my cataplexy attacks can vary from mild facial weakness to the buckling of the knees and collapse whilst still remaining conscious.

In the morning whilst the three of us disected the night before I think I had approximately 50 cataplectic attacks in 2 hours – all of which were the violence aggressive type resulting in me being completely paralysed in a variety or random and ridiculous places. Some were bloody funny such as falling in the sand right after Laura had put sun cream on my back which meant I had inches of sand stuck to my body and at least 3 when I was coming in and out of the shower wearing a towel only…..falling to the ground acting as if I was at a nudist beach. I don’t know who I felt sorry for more David who had to keep running out of the room as I lay starkers on the floor or Laura who had full view and tried to cover me up. Luckily we are good friends!

These examples were all pretty funny and entertained us for a few days…but I also had some more dangerous ones when in the sea. Again Laura and David came to the rescue, taking all my body weight to prevent me from drownning in the water. I was gutted as really wanted to go water skiing but I decided to be sensible and save that for another day.

During our last few days we explored more of the island and found paradise a perfect way to end our time on this island.

1662126_10155241630345104_6305371069631820711_n

Sadly after a wonderful few weeks with Laura and David it was time to say goodbye as they returned back to London.

10403516_10155237626710104_254034227230185307_n

Anything is possible….


ebc
Reaching EVEREST BASE CAMP is a dream I have had for a while and the reason Nepal was top of my list to see. Months preceding my flight to Kathmandu I became increasingly pessimistic about my ability to conquer such an epic trip due to my narcolepsy….the risk of me falling asleep in the middle of the mountains was a scary prospect. However after only a few days in Kathmandu I found myself booking myself on a trek. I blame (and thank) this on the million of trekking shops in Thamel and listening to amazing stories by fellow travelers sharing tales of their treks.


POON HILL……THE TEST

Ignoring my anxieties I decided to do a practice trek to Poon Hill in the Annapurna region. I was pleasantly surprised that not only did I survive but it went relatively smoothly with only 1 problematic narcolepsy related incident. To be fair this was during the 4am steep climb to Poon Hill without medication.  I was testing to see how long I could manage without medication. DSC01901 From the start to end of this uphill climb I battled with staying awake. At first I just felt completely exhausted, this was shortly followed by me swaying from side to side and losing my vision.  I reverted to my usual tactics…. slapping my face, stamping the floor, and pouring ice cold water on my head. As ever these strategies were ineffective in keeping me awake. Half way up the hill (did I mention it was VERY steep) narcolepsy triumphed as I threw myself on to the floor for a quick 10 minute cat nap. I forced myself to continue and eventually got to the top, I don’t really remember this and pretty sure that I was asleep for the latter part of the climb. Luckily it was very dark so my stumble up the mountain was hopefully not too noticeable. I could see lots of other trekkers dive into their bags reaching for their cameras….my reaction to getting to the top was slightly different – I dived into the nearest space nearly knocking someone over in the process. Before I fell into s deep slumber I asked the closest person next to me to wake me up at sun-set….the man looked at me strangely but followed my instruction well and after 15 minutes he tapped me softly whispering “sun is coming”. After my brief cat nap I felt much better making the sun rise even more satisfying. DSC01914 Maybe I was a little bit too optimistic, sometimes I forget that my ability to function is due to two tiny little pills I take each morning. It is worrying to think about the impact these powerful medications are having on my insides but without them my life would be far too sleepy. I enjoyed a further nap in front of the fire at the tea house before I started on my 5 hour climb back down the mountain.

In general my brain behaved itself and with the help of my medication, midday naps and early nights this invisible disease was nearly invisible to me. I’m convinced the mountain air helps in someway. DSC01907 My trip felt particularly satisfying as I did it without a guide and porter relying on my map reading skills. I know this might sound like a stupid decision given my condition but I wanted to be able test out having no medication and sleeping in the middle of a climb…not so easy to do if a guide was with me.  All in all I was feeling positive about Everest Base Camp. DSC01935 Frustratingly I couldn’t completely shake off the feeling of doubt and apprehension about this adventure and had many a restless night (not that this is new) worrying about failing. I often said to people “it doesn’t matter if I don’t make it to EBC and that I will be happy that I have tried”. All who know me will know that I was lying through my teeth and that I would be devastated if Narcolepsy prevented me from reaching Everest Base Camp. My biggest fear was that altitude sickness would hit me hard because of my body’s weakness.


THE DAY HAD ARRIVED!!

On the 21st December I arrived at Kathmandu airport feeling both excited and terrified. Luckily I was distracted by a friendly, talkative Australian carrying a teddy-bear who I now know as the lovely JB.

jb

Most people seemed quite nervous about the flight but all I could think about was how excited I was to be able to have a sleep. DSC01981Within 15 minutes I was fast asleep and woke up just in time for the insane landing but incredible views of the mountains. I hoped that no one could see me sleeping because I was aware that I looked completely dis-interested in the mountains. This could not be further from the truth but as fellow narcoleptics will know, when you need to sleep you need to sleep. I concluded that enduring some mild embarrassment by sleeping on the plane was better than struggling to cope with Day’s 1 trek. This was a good decision and although I felt very tired, I comfortably lasted until we arrived at the tea house at 3pm where I had a very satisfying afternoon nap.

The days to come followed a similar pattern…..I made my way to the tea houses for lunch where I then treated myself to a post lunch sleep. By day 3 it was becoming increasingly noticeable that I was much faster than other trekkers….arriving to our destination 2 or 3 hours earlier than others. I admit this is partially because I can be ridiculously competitive but it was mainly motivated by my fear of time running out. What I mean by this is that each day I have a limited time of feeling awake and energised….in my day to day life I have to make plans around times when I am more awake. Trekking in the mountains is no exception!

Most trekkers felt that having regular stops and taking it slowly conserves their energy. For me it does the complete opposite – the more quiet time I have – the more I feel tired and sleepy. What worked for me was walking at a good pace, with few stops and lunch at the end of the trek allowing me to sleep directly afterwards.


HIGHLIGHTS!!!

 My Amazing Trekking Family

Meet the lovely (from left to right) Lauren, Ginny, Matt and Bec. The most amazing people to share this incredible trip with.

DSC02059

dingboche

matt and lakpa


Crossing many many bridges, always covered with beautiful prayer flags DSC02001 DSC02047

bridge


Yaks, Yaks and Yaks…..and buffalo’s of course

yak and anda dablam  DSC02018DSC02097


Amazing Stupas along the way snowy srtupa


Christmas Day Hike to Dingboche

DSC02006

kids xmasmerry xmas

DSC02023


Breathtaking views of the mountains. beautiful mountains

DSC02129DSC02104


Celebratory beers at Namache we did it beer-to be honest the drinks were not needed, we were all pretty drunk on oxygen.


NARCOLEPSY MOMENTS

Despite having the most amazing time…it would be a lie to suggest that the trek was easy and there were times where I did not feel strong enough to fight with Narcolepsy and I seriously considered giving up.

Excessiveness tiredness and sleep attacks:

The worst day was the last day, climbing down the mountains. I stopped regularly to sleep …on the path, café and any spot I could find. Despite having regular naps my ability to stay awake while trekking was diminishing.  On a few occasions I completely lost my balance and needed to be supported by my guide. This really was 2 hours of HELL…..I was desperate for it to be a suitable time to take my 2nd dose of medication. I normally take this at 1pm but at 11.30am I gave in.

Cataplexy:

Unsurprisingly cataplexy played a prominent part in the whole trek. This was inevitable given I had met a good group of friends who I found very funny. From the moment I met Bec I knew that cataplexy was going to join us; this started from the initial eye flickering and knee buckling at the airport which went unnoticeable. By the end of the first day I was collapsing all over the place. I cant let Bec have all the credit for  being humorous…..cataplexy was a regular occurrence when I was with all of my trekking family.

At a guess I was having about 15-20 attacks a day…nearly all in the evening when we sat playing cards and generally having fun. In general despite my cataplexy attacks being irritating they didn’t cause too much of a problem safety wise…..until the last day that is. I think I gave my guide a fright at 1 point as I just completely collapsed in front of him right near a sheer drop into the river. The trigger was a ridiculous joke I said to myself that isn’t actually funny and is not worth writing down.


I BLOODY DID IT!!

DSC02144

DSC02135DSC02142

Big thanks to my lovely guide Ram who was an amazing support during the tough times…..suggesting best spots where I could sleep along the trek. I am definitely the first person with narcolepsy that he has ever guide but hopefully not the last.

DSC02139


WHAT HELPS ME??

The main way I cope and manage is the support I receive from my family and friends. I have been thinking a lot about what is it that makes all the people in my life respond so well to my  cataplexy, sudden and often inappropriate urges to sleep or sleep attacks. Talking to my family, new and old friends I have come to the conclusion that my open and humorous response to my illness allows new and old friends to respond in a relaxed way. I want to STRESS I do not think the illness is funny….it is extremely debilitating and I would do anything to not have it, however humor is a key factor in my ability to maintain a positive attitude. I cannot afford to waste the little energy I have being upset or angry about it. I hope that other people with Narcolepsy are not offended by this as I don’t want to make light of our illness or suggest that developing such an attitude is easy. possible During my travels I have been overwhelmed by the positive support and response that I received in relation to having Narcolepsy. Of course I think people should accept anyone and everyone with any illness or disability. I would be horrified if I met people who were not supportive; but at the same time I can see how it can evoke different responses. Cataplectic attacks are often sudden, aggressive and can be scary to watch.  wake up to narcolepsy DSC02119


Narcolepsy is an invisible illness that most people have heard of but don’t actually understand it….I know I didn’t. A benefit to travelling with Narcolepsy is that it allows me to raise awareness to people from a variety of different countries, cultures and backgrounds.

Becb


On paper you might think that a person with  a diagnosis of Narcolpesy attempting to trek to Everest Base Camp is an accident waiting to happen.sleep4       sleep3 sleep2 sleep1


HOWEVER…..with a bucket load of determination, a big sense of humor, a positive outlook, and the support from family friends I think anything is possible…….

Everest Base Camp was for me!!

DSC02148

Hippie Hampi

Hampi was not on my list to see but nearly everyone I have met has said that it is a place not to be missed………I thought it would be rude not to see if the rumors were true. After a long and boring bus journey to Mysore I decided to treat myself to a sleeper train to Hampi, this is one of my best decisions yet as the beds were very comfy and as a bonus I bumped into Alex and Ana, lovely dutch couple who were also heading in the same direction.

train

After the unpleasant experience in Mysore we decided to be much more prepared and headed straight for breakfast and researched places to stay. We went slightly over the top and ended up seeing most of the guest houses; this would have been fine but we had seen so many we forgot what they were like (not going to get a career for trip advisor). At one point me and Ana found ourselves on the back of a scooter with this guy who wanted to show us his family guest house – only 1km he said – 3km later we arrive at the guest house,  it was lovely but too far out for us. We caused quite a stir on the back of the scooter as the rickshaw drivers went crazy at the scooter guy because they thought he was taking their business. An hour later were returned where Alex was waiting patiently with our bags. We eventually settled on a cute little guest house, one of the first we saw.

On day 2 the 3 of us rented out a scooter each and went off to find the lake. I nervously got on the scooter, nearly crashing immediately but after a few minutes I got the hang of it and loved it…..

image

We were stopped by a group of children who were beside themselves with excitement….I actually thought the 1 holding the umbrella might pass out. After a few thousand photos and sight of the rain clouds we said our goodbyes. As we left I thought I had problems with the scooter as it was stuck……I turned around to see 3 of the boys holding on to it. With some stern words from Martyn they let go and we were off.

Not anticipating the rain, within an hour we were freezing and soaked through. We took respite in a little cafe on the side of the road where we were soon joined by another group who were also sheltering from the rain. Making the most of it we enjoyed some lovely fried fish and shared a beer. When the rain eventually stopped we went back to the guest house and had a HOT shower (well bucket of hot water)…..I cannot being to describe how amazing this was!

Hampi is most famous for its old ruins so on day 2 we decided to leave the scooters behind and hired a rickshaw guide to take us round for the day.

image

elephant stables

ruins

We could have walked it really but it was helpful for me as I was able to have a quick power nap in the back of the rickshaw while the others went to see another ruin. I woke suddenly to a family standing over me fascinated by me sleeping.

On day 3 the lovely Alex and Ana left for Goa……shortly after I met Sam, crazy cyclist. Crazy as he started cycling on January 1st this year in Indonesia and is planning on cycling all the way back to London. He only has 10 months left…..easy peasy.

Inspired by Sams monster cycle I decided to hire a bike and test my knee.

bikes

bike photo

Good news on the knee front as so far it seems to be in good working order and despite my love for the scooter  I was so happy to be back on a bike. We spent the next 3 days cycling, eating, drinking and swimming in the nearby lake ignoring the sign that says ‘swimming prohibited, crocodiles in the water’.

image

lake boatamazing view

I had a great few days but was soon reminded by my cataplexy as I had numerous episodes including falling off my chair at a restaurant, struggling to walk and generally having minimal control over my body when laughing. Oh and please don’t worry I had none on my bike.

Luckily I had warned Sam and most of the other people were so stoned I don’t think they even noticed (although this wasn’t helpful as it was making me laugh more). Seriously everyone was very accepting and for the 1st time ever I met someone who has a friend with Cataplexy. A few people seemed really interested and were asking lots of questions….. luckily I was well prepared for this and gave them some Narcolepsy UK leaflets. A great way to promote narcolpesy awareness.

The guidebooks don’t lie when they describe Hampi as the place for hippies, lots of people were walking around randomly playing instruments or singing. I loved it (if only I brought my recorder with me). Every evening a group of people gathered at the tops of 1 of the many rocks for a jam session. There was a collection of  randoms…..French girl playing the flute,  a handful of European guys playing the guitar,  a few locals drumming, 1 eastern European playing the triangle most excitedly, an Iranian couple loudly times singing Iranian songs, local kids singing and the local Baba clapping every so often (although he was so drunk he was always out of time).  Random as hell but I loved it.

singing from the rain

singing isralei and kids

One of my many highlights of my time in Hampi was watching the sun set from the top of monkey temple and seeing the elephant from the local temple have a wash in the lake each morning.

Monkey temple sunset camra monkey

elephant happy elephant

I planned to stay here for 3 nights but this I ended up staying for 7 nights….my verdict is that the recommendations were correct – HAMPI A MUST SEE!

36 hours of my life that I do not want to repeat!

In all the guide books and all over the internet the advice is to not eat Ice cream unless you can be sure that it won’t make you ill. What do I do….buy a chocolate ice cream from the station. To make it worse at the time I  thought that it was extremely melted….but then went ahead and ate it anyway. I didn’t even really want an ice-cream, I was just very bored -:)

My first 5 hours on a 36 hour train journey was pretty fun, met a lovely Indian family, enjoying the views and feeling excited about Rajasthan. I was even glad that I was in sleeper class and thinking that there is no need for me to go in AC class.

I very quickly changed my mind as I got increasingly more and more sick (literally). I spent the next 12 hours being sick on my bed, in the aisle, in the toilet and out of the train door. I honestly have never ever felt so ill in my life. I lost all my dignity and sat on the floor despite it being wet everywhere from people missing the toilet. At 1 point the train driver told me off for having the door open as it was in the night but after very nearly being sick on his shoe, he re-opened the door for me and left me to it. After holding on for nearly 4 hours I thought that I cope being back on my bed….as soon as I climbed up I was climbing down and running back to the door. I was glad that it was in the middle of the night as most people were sleeping.

Not all though!!!! One man was so fascinated he felt the need to take a photo of me being sick out the window. I am used to my photo being taken but I really have no words for this, I dread to think where this photo is now.

I finally stopped being sick after 12 hours and spent the rest of the journey huddled up on my bed, feeling pretty sorry for myself. I finally arrived in Jaipur and spent the first day recovering in my hostel.  It was a family run hostel who were amazing and kept checking on me and giving me boiled rice to eat.

Oddly but interestingly my narcolepsy on this day is the WORSE it has ever been. I was laying on my bed having horrific hallucinations alongside sleep paralysis which was then causing me to have cataleptic attacks over and over again. I didn’t time it exactly but my cataplexy lasted for at least 30 minutes.

I’m sorry for the awful picture but it really does sum it up well.

On top of this I kept having repetitive vivid dreams of normal daily tasks for example I kept dreaming that I was having a shower and getting dressed. I know this doesn’t sound that bad but these dreams are unbelievably vivid, so much that I wake up suddenly in complete confusion and realize that it was a dream. The best way I can explain it is that I feel like I have been drugged… I could be laying in bed for 5 and 10 minutes but I genuinely still think that I am up and dressed.  I am experiencing this more and more these days….it is really quite irritating.

My consultant (who is a very good Narcolepsy expert) is of the view that having a virus as a child could have caused my narcolepsy and that over the years the illness has manifested. I’m no doctor but I think that there is a clear correlation between becoming unwell and an increase in my narcolepsy symptoms. I wish my narcolepsy wasn’t affected to this extreme but at the same time it is hopefully that maybe at some point in the future treatment to address the cause rather than ‘just’ the symptoms will be found.

As you can imagine I was feeling pretty pissed off and exhausted but when I got to “extreme sorry for myself mode” I reminded myself that at least I wasn’t being sick out of a train window anymore. Next thing I know is I have fallen off my bed….evidently I found this funny -:)

Thankfully the next day although I didn’t feel 100% I was tucking into a rather large pizza on the roof terrace…..I was definitely ready to start to explore Jaipur.

hostel

I had a whirlwind tour of Jaipur known as the pink city (although I thought it was more of a brown colour)pink city

Here are a few of my highlights;

  • Amber fort

amber fort 2

amber fort

view from amber

  • Palace on water – Jal Mahal

palce on water

No more cataplexy???

I haven’t had any big attacks since I have been in India. I thought for a second that maybe the sun, curries and no stress may be the answer.

Course not – Cataplexy was alive and kicking during my Skype call today to Laura Marshall and the lovely little Parsons (Bethany, Holly, Chloe and Charlotte). I shouldn’t expect anything else. It was a very funny conversation after all, especially when Mr Socktopus (sock made into an Octopus) took over the screen and when I discovered that I couldn’t hear them all because my head phones were not plugged in. Luckily for me I am skyping from my bed so during my many cataplectic attacks I just fell back onto the bed. Pretty funny for them as suddenly I was there and then I was gone.

Off for dinner with the indian family I am staying with, wonder what there reaction will be if I have a moment??? I will refrain from making any funny jokes over dinner.

I have my narcolepsy leaflet in my pocket just in case -:)