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. 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.
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.
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.
Yaks, Yaks and Yaks…..and buffalo’s of course
Christmas Day Hike to Dingboche
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.
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!!
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.
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.
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.
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!!
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!
Hello all, I thought it was about time I shared my experiences of the first project I have volunteered with teaching children in a school.
Fresh off the flight I made my way straight to the village of Kanjunar in Tamil Nadu (South East India). This Nursery and Primary School was founded in 2004 to provide basic and global standard education to children living in underprivileged rural communities aged between 3-8 years, who cannot afford a good education. There are approximately 70 children from the neighbouring villages and 5 staff. The school is run by a local family, Bala and his wife and mother (I was there for 3 weeks but embarrassingly can’t remember the names of Bala’s wife or Mum).
As I mentioned in a previous blog Kanjanur is a rural village where the locals speak limited English and live in basic conditions where access to electricity and running water is limited. Like the village school life was a massive culture shock.
The three main differences are:
1). There very little play time even for the 3 year olds.
2). There is extremely high expectations of the children
3). Physical chastisement is normalised in the classroom.
Being at this school made me realise how easy I had it at school.
Before arriving to India I tried to prepare myself for seeing a different style of teaching anticipating that the teachers would hit the children but 3 years being hit or whacked on the head for not sitting quietly (after a 1 hour lesson!!) is distressing to watch. The social worker inside was having a heart attack. Not surprisingly all the children even the little ones behaved perfectly for most of the time. For me however they were not so well behaved. On one day myself and fellow volunteer Jayne took the nursery class thirty 3 year olds. They were all amazing at first and very engaged with our activities, however like most 3 year olds after 25 minutes they progessively started to lose their concentration and misbehave. Jayne and I tried all the strategies we knew to keep them engaged but our efforts were not successful. Instead we admitted defeat and watched 30 children go crazy. We both found this highly entertaining and enjoyed watching them have so much fun, even if it was at our expense.
As you might have gathered I Initially felt very negative about the school however time at the school, getting to know the teachers, children and families has shifted my view. Time at the school hasn’t chased me into a child beater and I still don’t agree with hitting children but I think I need to accept the cultural differences in India and most importantly turn my attention to the bigger picture. Forgetting about how children are taught in this remote and rural village it is extremely positive that education is valued for both girls and females. Speaking to parents and grandparents a lot of them mostly females did not have the opportunity to go to school. And of course very day I saw the happiest faces walking into school. Nearly every child I asked said yes to liking school, don’t think I would get the same response in England.
My home in Kanjanur
The only thing I didn’t enjoy about the shower was all the bugs that were joining me. At one time I counted 5 lizards, over 15 spiders and a ridiculous amount of ants crawling on my feet until I poured water on them. Most people who know me are aware that my showering routine is less regular than most people. However it is so hot and sticky here a cold shower felt like Christmas. I became a pro with using a bucket to throw over my head and on one weekend away in Pondicherry I chose the bucket over the shower head. I wonder if the ice bucket challenge was a help?
Some of the other volunteers initial worries on arrival were about how they were going to go to the toilet and shower. Mine was how I was going to get some food as I was starving. There was no need for me to worry as there was plenty of food to eat in the village, I had no idea what it was half the time and had to ignore the ants crawling but it was damn tasty and cheap as chips.
There was always a choice of where to eat but we always made our way to the same place owned by a local family. We really got to know this family and so far the Dad of the family in the picture below is my favorite person that I have met so far. He would do anything for you and expected nothing. Before I arrived in India lots of people told me that I should be very wary about trusting people and that nothing is done for free but so far it seems the people of Kanjanur and neighbouring villages are an exception to this.
I loved my time at the school, the kids we’re great and not wanting to sound too gushy BUT I feel privileged that I had the opportunity to get to know the people of Kanjanur. The kindness and warmth by everyone is inspiring. All that said I felt it was time to leave and see what the rest of India had in stall for me. I also hope that I can become involved with a project where my support can be more sustainable. I have many more in the pipeline so I will keep you posted.