Anything is possible….


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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.

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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.

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

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

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Amazing Stupas along the way snowy srtupa


Christmas Day Hike to Dingboche

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Breathtaking views of the mountains. beautiful mountains

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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!!

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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. 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.

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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.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!!

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Kathmandu

Before I left for my travels most of you who know me shared your concern for my safety  – not really because of my narcolepsy or the fact that I am a solo female traveller  but more because I am ‘Grace’. I will be the first to admit that I have a long history of finding myself in one predicament or another.

To get to the point on 28th November I arrive in Delhi airport to get my flight to Kathmandu on time with my passport, tickets, accommodation and pick up from airport organised…..what else did I need…ah yes money, at the very least 100 quid for my visa fee! All I had was a misley 300 indian rupees due to misplacing my wallet and not being able to find a western union to draw money out of. I was fully aware of this on route to the airport but was hoping for some miracle.

Despite the mess I was in I was keeping it together…this didn’t last though after I was repeatedly informed that I should not get on the flight because I would  be deported back to India if unable to pay the Nepalese visa fee. This sent me over the edge and soon the tears piled in –  I could not stop them – although to be fair I didn’t try to or care what I looked like. Most of the airport was looking at me but this was no different to the last 3 months.

I was still holding out for a little miracle and  headed through to security.  Once in the departure land I felt surprisingly calm and with the incredible views of the mountain I nearly forgot about my visa issue. I was lucky to get a window seat despite my late check in….I have a feeling that the lady at the counter arranged this for me as she seemed quite concerned.

Lucky for me a miracle did happen in the form of a ginger scott named Greg who kindly paid for my visa (only a 100 dollars eh). For the millionth time….Thanks!!

As you can imagine I was pretty damn happy to be in Kathmandu and to meet Susma and Hari from Wahoe Nepal, a newly formed NGO in Nepal.

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My role was to support the team with administration tasks such as promoting the charity on social media and planning for future volunteers.

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In return I stayed in their apartment where the main office was based for a week which allowed me to spend the rest of my week exploring the many streets of the main backpacker area of Thamel and main sights in Kathmandu.

 

Thamel

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Boudhanath Stupa

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My favourite place was the Boudhanath Stupa, the largest stupa in Nepal and the holiest Tibetan Buddhist temple outside Tibet. It is the center of Tibetan culture in Kathmandu and rich in Buddhist symbolism. Surrounding the Stupa are streets and narrow alleys lined with colorful homes, Tibetan Buddhist monasteries, and street vendors. I could have easily stayed here all day.

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Pashupatinath

Pashupatinath is a Hindu temple on the banks of the Bagmati River in Deopatan, a village 3 km northwest of Kathmandu. It is dedicated to a manifestation of Shiva called Pashupati (Lord of Animals). It attracts thousands of pilgrims each year and has become well known far beyond the Kathmandu Valley.

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The temple is barred to non-Hindus, but I was allowed to walk around the grounds on the banks of the Bagmati River where Hindu cremations were taking place. I was fine watching this from a distance but my guide insisted that I had a closer look.   A guide informed me that most Hindus come here to contemplate life and how they enter and leave this world with nothing. He thought of it as a peaceful place excellent for meditation.

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Swayambhunath

Swayambhunath is an ancient religious complex atop a hill in the Kathmandu Valley, west of Kathmandu city.

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It is also known as the Monkey Temple as there are holy monkeys living in the north-west parts of the temple.

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 These monkeys scared the life out of me….they were everywhere!!!

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I had a great week in Kathmandu but I must admit the highlight of my week was meeting up with Mr Langley and his lively cohort. His visit was short and sweet but we had a great evening eating, drinking and dancing the night away.

After a week the smog was really getting to me – sadly in Kathmandu the pollution is so severe that the mountains can no longer be seen. I was dying to see the mountains, so off to Pokhara I head!!