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.

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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.

The 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.

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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.

                  

    

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.

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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.

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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.

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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. 

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.

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

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!

         

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.

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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.

         

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

   

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

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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.

The Beautiful Halong Bay

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.

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

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

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.

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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.

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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.

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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.

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.

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

      

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.

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.

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!!

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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.

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.

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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.
   

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

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.

 

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

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

         The cutest lady who was desperate to have her photo taken

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

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.

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!

      

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.

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

About Me

About Me.

Anything is possible….

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.

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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.  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. 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. 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. 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.

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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.

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. Within 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.

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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.

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Crossing many many bridges, always covered with beautiful prayer flags

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

  

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Amazing Stupas along the way

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Christmas Day Hike to Dingboche

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Breathtaking views of the mountains.

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

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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.

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I BLOODY DID IT!!

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.

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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. 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. 

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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.

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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.       

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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!!

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.

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…..

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.

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.

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’.

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.

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.

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.

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

Here are a few of my highlights;

• Amber fort

• Palace on water – Jal Mahal

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 -:)

Tranquil Neeyardam

Today (Saturday  28th September) I arrived in to Neyyardam where I am staying for 3 weeks. I am here to volunteer in a charity called BGM. It is a registered charity which strives to uplift the weaker sections of society with a special emphasis on the development of basic human needs for some and children from tribal areas.

I had organised this project months ago and subsequently started to  feel unprepared on the bus journey not really knowing what to expect. Unlike the first project I had spent less time researching the area;  I couldn’t remember the details of where I would be staying, how much I would be contributing and what my role will be. I was feeling sad to leave Kovalm and was debating whether another project at this point of my travels was the right decision.

I am staying with a family, Wilson and his wife, Wilson’s daughter Alfa who is 13 and niece Lydia who is 21. The family live downstairs while I am staying upstairs with the other volunteers  Adam and Sandra, a couple from Sweden. I pay a contribution for food and board in return I get food 3 times a day which I eat with the family.

Me and Alfa

When I arrived at the families house I was met by Alfa who quickly showed me to my room. It was dark and raining when I arrived so my pessimistic feelings remained. Shortly after my arrival I met the other volunteers who both were really nice and gave me a preview of what was to come. This was followed by a delicious dinner with the family. Slowly I was starting to feel optimistic about the next part of my journey.

However,  my first night was not what I had hoped for. Due to the storm there was no power and consequently my room felt like a sauna. In addition I had fallen asleep straight after dinner, waking up at 10pm resulting in feeling a combination of feeling wired and extremely tired. The next few hours were horrific, I was stuck between feeling desperate to sleep but not . This is thanks to hypnagogic and Hypnopomic hallucinations, cataplexy and sleep paralysis – Narcolepsy at its worst.

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Hypnagogic hallucinations are a feature of narcolepsy. It is when dreams break off at wakefulness causing visual, auditory or touchable sensations. They occur between waking and sleeping, usually at the onset of sleep. In layman turns I start to dream just before I fall to sleep and therefore I am dreaming when I am awake. Dreaming implies that it is pleasant, nightmares is the better description.

Before medication I used to experience this all the time but now it is only on rare occasions. I generally have a positive outlook about my narcolepsy but I admit that I can’t help but feel sorry myself  when I have these hallucinations. My hypnagogic hallucinations mainly consist of seeing people in my room and on this night also lions at the window. The worry about lions was triggered by a conversation over lunch that a lion escaped and killed an animal. Writing about it now seems silly but at the time it feels very real and can be extremely distressing. On this occasion I it had scared me to the extent that it had triggered several cataplectic attacks where my whole body became paralysed. This is unusual for me as generally my cataplexy is only triggered by positive  emotions. I also experienced sleep paralysis where I am not able to move. This exacerbates the fear as it feels that I am unable to get away. I remember screaming but not sure how loud, luckily I wasn’t sharing a room with anyone.

To avoid further hallucinations and cataplexy I desperately tried to stay awake but it was impossible. I eventually got to sleep without the hallucinations and cataplexy.

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Following an exhausting night I up woke tired and grumpy. My mood readily improved after walking out onto the balcony looking at the incredible view. Within minutes I felt calm and happy…..Neeyardam was a good choice after all.

View of the lake from my balcony

Neeyardam is an understated area of South India. It is rarely mentioned in guide books and is not prepared for tourists; but in many ways this enhances it’s qualities. If it wasn’t for this project I would have missed out on some amazing sights.

During my stay at the project I will be teaching some classes at the local school, getting involved with other projects such as women self help groups, women literacy groups, after school clubs for children and families in the local villages and building water wells.

Tomorrow I am off to see the lion safari with the other volunteers Sandra and Adam; would be rude not to given that they are my neighbours from across the lake.

Kovalm: good people, lighthouse, lovely beach and the crazy fruit lady (23rd to 28th September)

I am writing this drinking a beer looking out onto the beach in Kovalm….life is good.

I arrived in Trivandrum, Kerala’s capital after a 13 hour bus drive from Pondicherry. The bus journey went pretty quick as I slept most of the way and had two seats to myself at the front with extra leg room. Not so good for the guy who had booked that seat but being the only female on the bus, he was made to move.

After being ripped off from a Rickshaw driver in Pondicherry (embarrassingly paying 700 rupees for a 2km drive which should have only been 100 rupees) I was determined for that not to happen again and instead had a gruelling walk to the bus stop to heading to Kovalm. Finally I made it on the bus and a few hours later I was sitting on the beach watching the surf.

For 4 quid a night I am staying in a pretty nice hostel, chuffed with how clean and spacious my room is. Well it did feel like that at first until 2 Australian guys and 1 German joined my room. Ok by room I mean a 6 bedroom dormitory. Within a day my room smelt like boys but not all bad as they did the beer run and provided good entertainment in the evening. Embarrassingly I slept talk a lot and apparently on one night I was shouting “it’s your choice the sofa or the dog”.

Fitting their stereotypes the Australians followed by a German (with a South African accent) spent their days surfing so I went for a bit of sight seeing with the other guys in the hostel. Myself, Canadian Cam and northerner Mike headed off to Kanyakumari the southern most tip of India.

It is the meeting point for 3 oceans, the Bay of Bengal, Arabian Sea and the Indian Ocean. Besides it’s importance as a pilgrim centre it is well known for its beautiful views…..

We had to get a boat to the two different islands. On the first boat a local man with a camera was looking our way, in unison we all turned to the camera and smiled. To our surprise and outrage the man put his camera down and waved us out of the way…..not what we expected or what we have been used to! Shortly after our western fame returned as a child was thrown into Mikes arm for a picture.

The rest of my time was spent in the beach, walking around the shops, eating good food and drinking beer from a mug as most of the restaurants don’t have licence to sell alcohol.

Kovalm is a wicked little beach resort which reminded me of home due to the light house, surfers and good waves. While thoughts of Devon and Cornwall came into my mind I was suddenly reminded of my location due to all the street sellers desperate to sell me something. So far the award to the most persistent and creative seller goes to the crazy fruit lady. Each morning she would hunt me down, I am convinced she has some super power as she could find me. On the last day I gave in and agreed to buy some, annoying I made a school girl error and didn’t agree the price before. In seconds she had chopped a whole papaya and was half way cutting through a whole pineapple. As much as I liked the fruit I have no intention buying that much. We finally agreed on 150 rupees which is still over priced for what I had.

Me with the crazy fruit lady, the man behind sells scarf, he was laughing as in the first photo he was hanging a bag of rubbish over my head….funny man.

Always an amazing sun set in Kovalm

View from the top of the lighthouse

Selfie of me and Mike

Climbing up the lighthouse

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My drug smuggling challenge!

I firstly want to point out that I am talking about legal controlled drugs for my Narcolepsy and nothing else…don’t want to get myself in trouble particularly while I’m in a different country -;)

Getting enough medication

I take 400g of Modafinial a day and 40g of Clomipramine. Modafinil is a central nervous system stimulant and works by preventing excessive sleepiness during waking hours. Clomipramine works by repressing my REM sleep. Without these I would be sleeping my way around India and South East Asia.

Before developing narcolepsy I had always been healthy and had no need for any medication so I was completely ignorant to the complications that arise for those requiring medication abroad. Naively I thought it would be possible to get medication for a years travel. However the NHS guidelines dictate that 2 or 3 months is the longest prescription you can take, even in exceptional circumstances. This seems extremely unfair discriminating people with narcolepsy or other life long health conditions from going on holiday or travelling for more than 2 months.

Yes I have narcolepsy and yes it is a debilitating illness however with the right medication and lifestyle changes I can live a normal life (well just about).

My first hurdle was getting enough medication to last my travels. After being very persistent with my doctor he eventually agreed to give me 5 months of medication. Six  months prior to flying I began re-ordering my medication a few weeks earlier each time. Altogether I had just under 2 months worth of additional medication. I was pretty happy with this and figured that I had plenty of time to plan for any additional medication that I may need.

With a sufficient amount of medication I then had to make sure it fitted in my bag (not an easy task).

Getting medication abroad

My options are to either get medication in India or to ask my parents to apply for my repeat prescription and get them to send it over.

Out of the two I think the first one will be the most likely as I don’t have a fixed address and I think it is likely that the package could be stopped at customs.  I have been in India for 3 weeks but my first task was to go to a reputable pharmacist and request Modafinil.  I showed the pharmacist my Doctors letter and within a day I had a packet of Modafinil. In the UK it costs 70 pounds I paid just over 1 pound.

A big worry was whether this medication is safe to take and if it actually works.  With a friend I decided to try 2 tablets to see the effect, I have had no unusual side effects and it seemed to work fairly well. When I get to a bigger city I am gong to make an appointment with a Doctor to confirm that it is the right medication.

Getting through Customs safely

My next mission was to make sure I was be allowed to take it into India and avoid fines, prison and it being confiscated. I am predominately referring to the Modafinil as it is a controlled drug. However I took the same precautions for the Clomipramine given the quantity.

On the way to the airport I was feeling anxious about getting my medication through customs. To my surprise this was not a concern for the security staff who were only interested  in ensuring that I had no liquids over 100ml.  However to ease my anxiety and to justify my time spent preparing  I demanded that they saw my medication and relevant documents. I got the feeling that they thought I was pretty odd as I’m guessing most people would be relieved….

With the UK customs going so smoothly I was convinced that I may have trouble getting into India. I had images of my face being in the Sun with the headlines ‘British Social Worker arrested for drug laundering’. However again I had no problems although with hindsight his is probably because I didn’t declare it. I planned to but was advised by security staff that I did not need to.

I have only been in India for 3 weeks and have further flights and border crossings to get through so I will keep you posted with any other issues that might come up on the way. Fingers crossed it will be fine.

My top tips for travelling abroad if you have Narcolepsy:

1). Always carry medication in the correct packaging with the prescription stapled to the side.

2). Have a multiple copies from your Doctor confirming your itinerary, what medication you take, how much and why.

3). Declare the medication when you go through customs.

4). Keep your medication in hand luggage and under your control during travel.  Narcolepsy UK recommended that the medication could be damaged or lost if kept in the aircraft hold.

5). Ask your Doctor to write a letter explaining Narcolepsy and Cataplexy (keep lot of copies).  My Doctor wrote that I may collapse suddenly. I also spoke to the air stewards to inform them about my health.  I wasn’t too worried about my Cataplexy , however I was worried that I could miss meal times due to being asleep so I asked staff to make sure they wake me up when food comes.

6). Bring several leaflets explaining Narcolepsy from Narcolepsy UK. I gave some to give to the airport and security staff but I have also   given it to people I have met along the way.

7). Licence from the home office confirming authoristation to import large medication of controlled drugs for my use only. I didn’t have this letter from the home office but I have now requested it and hope to have it with me for my next flight. The Home Office Drug Licensing and Compliance Unit or DLCU can be contacted on 0207 035 0792 for information on licenses for exporting medication for your use; a license costs up to £24.

8). Pre planning  – I cannot stress this enough, it really reduce any worries.

(Please note my advice relates to my prescribed  medications, refer to the websites below for advice about any other medication).

Information and advice from Narcolepsy UK and the Home Office has been invaluable. If you are considering going on a holiday or longer adventure check out the websites below:

Narcolepsy UK – http://www.narcolepsy.org.uk/living-with-it/holidays-with-narcolepsy

The Home Office website –  https://www.gov.uk/travelling-controlled-drugs.