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!!