A step too far at altitude: rainbow mountainous

After spending more than a week at altitude between Bolivia and Peru, we had the chance to go even higher. The rainbow mountain trek, three hours drive from Cuzco, takes walkers close to the height of Everest Base Camp at 5,200m. Most people do this as a day trip from Cuzco.

To get to these multi-coloured mountains, from what I’ve read, you are:

1. picked up from Cuzco at 3.30am in the morning
2. driven for three hours in the dark along mountain roads
3. stopped at 4,200m for breakfast in a small village
4. made to walk (or take a horse if you’re struggling) from 4,200m to 5,200m in a chain of people with the guides pushing you on because there is not much time

You walk the same route back and on the drive back to Cuzco you can see the mountain road that was driven in the dark earlier and is apparently terrifying.

Last big adventure

This was something that Elaine and I were both nervous about long before coming to Peru as we had read some frightening accounts. However we aren’t the type of people to give in to fear (some would say we’re a little foolish sometimes, hey mum!), we signed up for a Rainbow Mountain tour while booking our place for Machu Picchu. It would have been our last big adventure and it felt appropriate after opting out of being in altitude at the start of our trip in Nepal.

In the days leading up to the trek, Elaine and I both felt uneasy separately and it wasn’t until at dinner the night before the trek that we talked properly about it. Discussing the pros and the cons led us to try to work out what our motivations were for doing it. On reflection, the reasons were shallow. We wanted to:

• get good pictures of the mountains
• say we had been at that level of altitude
• feel that we could do anything we put our minds to

The reasons weren’t strong enough to quiet the doubts. We already have plenty of incredible pictures from our trip but had learned that a nice picture is not worth a day of hell. Rainbow Mountain was a climb too far for this pair of adventurers, on this occasion.

Relief

When we made the final decision not to do the trip as we went to bed, I was surprised at how much relief I felt and not a hint of regret. The next day that relief only grew.

The incident taught me something important about travelling: just because something is presented as a once in a lifetime opportunity or a must see, doesn’t mean you should abandon what works for you.

Setting boundaries and listening to your body is just as important when you’re wearing a backpack as when you’re at home. Memorable experiences come in many different forms and don’t have to involve putting yourself in real danger. Particularly when you have less than a week until you catch your unmissable flight home.

What we did instead

Instead of dragging ourselves out of bed in the middle of the night, battling our fatigued bodies up a mountain amongst crowds of people and then panicking as the bus jerked along a treacherous mountain road, we:

• had a lie-in
• did a yoga class
• had a relaxing brunch at a place we wanted to try
• explored the incredible Incan site Saqsaywaman on the edge of Cuzco

In between those things, we stopped to soak up the sunshine and enjoy the buzz of Cuzco’s main square. It was a day of being rather than doing.

So I never got to see the Rainbow Mountains and I probably never will. My instagram feed may be a duller place for it, but my memories of being in Cuzco are better. That to me is a winning trade off!

A week at altitude

Since my last post about stepping into the unknown of altitude in Bolivia, I have explored the Salar de Uyuni, spent 24 hours in Bolivia’s capital city La Paz and travelled to the former Incan capital of Cuzco – all of which are 3,400m or above. In this post, I have broken down my experience with altitude and myasthenia gravis into a daily diary covering the first seven days.

Day one

Landing at 4,100m in the La Paz airport, the highest international airport in the world, was a shock to the system. We had a day to spend there before our evening flight to Uyuni and considered getting a taxi to the lower city centre (3,660m) to make life a little bit easier. But on arrival, we found a hotel in the airport where you could pay by the hour… at this height, to conserve energy.

Observing my symptoms closely, I noticed that first came a flush to my cheeks and my skin stared tingling. This was followed by a slight tremor of the heart as if it was shaking with uncertainty and then a burst blood vessel in my eye. Next, the delight of an upset stomach. While all this was happening, we were having a Netflix binge while lying sprawled in the hotel room.

After 8 hours at that height, I was feeling rather spaced but nothing else more serious than the symptoms above. I could feel my circulation working a bit slower than normal as my hands and toes were cold and my lips had turned a strange purple shade.

My appetite had disappeared but we had read that you should make yourself eat as your body works harder than normal at altitude. After some chicken salad, I felt a sudden energy boost – a pattern of eating and feeling better that continued for the next few days.

The flight to Uyuni gave us a break due to the normal oxygen levels on planes. Once back on steady land, we were at the slightly lower altitude of 3,600m.

Day two

During a broken but not terrible night’s sleep, I felt my heart working harder than it normally would so I had to lie on my right side. I woke to find my face puffy and my pupils huge. My body was tired but not weak -I was hungry and I woke up with a thirst as if I had been smoking and drinking all night.

We allowed ourselves to have a day of rest to acclimitatise. This meant barely leaving the hotel and walking everywhere very slowly. After breakfast I felt better although my lips were still purple tinged.

While we lounged about the hotel reading, the fires were roaring but I couldn’t get warm. Putting on all the extra layers I had didn’t really help as it felt like it was coldness coming from the inside out. The hotel had a sauna and jacuzzi but I didn’t want to risk the extra pressure of heat on my body, so I had regular hot chocolates (caffeine and alcohol were advised against).

By 9pm I couldn’t keep my eyes open and passed into a coma-like sleep.

Day three

I slept like a log and woke up feeling nearly normal although my face was still a bit puffy and my lips still had a purple tinge.

After another relaxed morning and a FaceTime with some friends (which would have tired us out the day before), we went for a tour into the Salar De Uyuni.

Walking very slowly between the stalls in Colchani, between the Dakar monument to the salt hotel and then posing for lots of silly photos (see below) tired me out, but it was totally worth it. I found myself slightly breathless after doing a yoga pose, but thankfully I was able to catch my breath quickly.

We spent the last hour and a half having a picnic watching the sunset and taking our first taste of alcohol since arriving in altitude. My body told me clearly ‘don’t overdo it’ so I kept it to a small glass simply to enjoy with the best sunset I have ever witnessed.

Day four

After another good night’s sleep – deep and restful but with some crazy dreams in the morning – we flew back to La Paz.

Instantly on arriving back at 4,100m I felt the thinner air and the pollution speed up my breathing and heart rate. As we slowly descended with the taxi into the incredible city, which is in a valley surrounded by the huge mountains of the Andes, I felt myself relax.

For the first time since arriving in altitude, we did lots of walking (close to 14,000 steps) and because of how the city is laid out, we had to walk up a lot of hills. However we took our time and didn’t have any problems.

Saying that, I got a headache and my ears were popping like crazy when we took the teleferico back up over 4,000m but we didn’t hang about long at the top. That sudden headache reminded me how much difference 500m can make.

Day five

We flew to Cuzco, Peru, which is at the slightly lower altitude of 3,300m. I expected to find it easier to breathe right away after being back at 4,100m in La Paz airport. My breathing felt smoother inside the airport although the pollution of the city was quite bad. After a rubbish night sleep in La Paz due to a dusty, creaky room and probably eating too much too late, I felt a bit ropey and after eating my first meal in Cuzco felt thoroughly poisoned.

That meant being unable to do anything after 6.30pm so the first night in Peru was wasted and I was up with an upset stomach through the night.

Day six

After another rubbish sleep, I was awake early and did what I probably shouldn’t have – caffeinated the problem away. This gave me a false sense of energy and the tiredness at altitude felt like a distant memory.

We spent the morning and early afternoon organising activities for the rest of our time and then visiting some of the city’s attractions. Unlike anywhere else we’ve been in South America, except Ipanema Beach in Rio, the people of Cuzco relentlessly try to sell tourists stuff. Once we politely said no to our 14th massage, 20th restaurant, 37th hat and 42nd selfie stick, we were drained and found a quiet bar for respite. The peace of the bar was so nice that we couldn’t resist a second drink and then having tapas for dinner would have been a crime without a glass of wine.

So basically Cuzco was where my caffeine and alcohol consumption went back to normal. You’re really encouraged not to drink at altitude – because it’s a depressant and because you’re already dehydrated. So after initially passing out, I woke up with a racing heart in the middle of the night.

Day seven

When the alarm went off at 6am for our first trip out of Cuzco I had slept on and off but didn’t feel rested. Thanks alcohol!

As a result, by the time we got to our first stop – a lake in the town of Chincerro at 3,700m I was out of breath and felt very weak. The stairs to the first Incan settlement in the same town were a real struggle. Each one feeling like a mountain – similar to how I feel on really bad fatigue days.

As we moved down into the Sacred Valley, things got easier – although climbing the stairs at Ollantaytambo was still a challenge that required a pause halfway. By the end of a full day in Pisaq, a settlement around 3,500m, I felt thoroughly exhausted and was not looking forward to the 4am alarm clock for Machu Picchu the next morning.

In reality, the wake up was tough but our eighth day was much easier as Machu Picchu is around 2,500m above sea level. As a result, I was able to bound around the mysterious ruins, while other people were walking around grey-faced, looking as if they could be sick at any time.

This feeling of having all the energy in the world is common when you come down from altitude and so I’m looking forward to how amazing I will feel when we reach Lima, the final stop of our trip.

In summary

We have now managed to spend 10 days at altitude without any real problems and without having to take any special medications.

I have managed a tough yoga class, a lot of walking and have climbed thousands of Incan-built stairs.

I think the following made my first extended period at altitude easier:

• taking the time to acclimatise properly by having two full days of relaxation
• not drinking alcohol or caffeine for the first three days
• eating light meals
• allowing ourselves to go to bed early and not overdoing it

Now that I have seen how my body reacts to altitude, I would be less nervous about going above 3,000m again. Saying that, I won’t take it for granted and will definitely take the same precautions and have a back-up plan in case I react differently next time as altitude, like myasthenia gravis, is unpredictable.

Bangkok

Arriving in Bangkok is organised, air-conditioned bliss after the anarchy of Kathmandu…even if you’ve grown fonder to the craziness as I had. Everything in Bangkok is signposted, efficient (take a ticket number for an airport taxi and go to the booth with the same number, voila!) and there are plenty of people around to ask for help. Still, after an intrepid first fortnight of travels, I felt a slight sinking feeling as we stepped back into an intensely structured universe.

Thankfully, that sanitised order ended at the airport door – the area around our hotel in China Town was more like a bustling street bazaar full of exotic food for sale like Durian, sticky mango rice and Jack Fruit. Delicious!

With its rich-poor divide, its drive for convenience and modern comforts (particularly good coffee) and its seedier side nestled down dark alleys, Bangkok is like many cities I’ve visited before. But it has its own vibe too. It has alligator-like lizards swimming in its canals, Tuk Tuks dressed up with flashing lights zipping down busy alleys, anything you can imagine available to buy on its streets and an architecture style that is completely new for me. 

The lizards of the canal – Water Monitor lizards.

Day 1 sees us decide to walk the 30 minute journey from our hotel to the Grand Palace as a novelty after it being near impossible to walk in Kathmandu due to pollution. The humidity gets in on me and it’s clear why most people ride mopeds rather than walk here. I worry that this heat may bring about some issues with my MG as I feel exhausted almost right away. But I learn on that first day that an air con break with a delicious fruit smoothie and a salty sandwich is what will revitalise me here, not my normal caffeine fix. 

Over the next 4 days we try to take in as much of the city as we can including temples, art exhibitions, a boat trip, shopping, night life and a ladyboy cabaret. We also dedicate a day to our hotel’s rooftop pool and bar; watching the boats on the Chao Praya river and trying to conquer the inflatable flamingo. Thus in Bangkok we try to cement the balance of ‘doing’ and ‘being’ that we want to keep throughout the trip. This trip is about rest and recovery as much as it’s about adventure.

I’m not sure what I expected, but Bangkok is definitely better. From a privileged tourist perspective, the value for money is unreal compared to home, it’s easy to get around and no matter where you are at what time of day or night, there’s a Tuk Tuk or taxi driver waiting to haggle with you – and 9/10 times for me they were polite. While there are quite a lot of Seven 11s, Starbucks and McDonalds, there are a lot less chains here which allows different areas to have their own feel.

I have no doubt that Bangkok has its own issues (many of which lurk down those dark alleys), but as someone passing through its relaxed atmosphere, variety of attractions and affordability mean I’m certain I’ll be back here.

Extended honeymoon

It has been a while since I’ve posted here and in truth that’s because I’ve been busy. I’ve been working away from home Monday to Friday and in my free moments I’ve been preparing for my wedding (most definitely the best day of my life) which happened in August.

More recently I’ve been preparing for my upcoming extended honeymoon.

That’s right – Elaine and I have decided to do something extra ordinary for our post- wedding break and so we’ve given ourselves up to 8 months off work to travel.

After many years of one of us working away from home, we’ve decided to start our marriage with some lengthy quality time together and to go to parts of the world we’ve dreamed of seeing:

• Nepal
• South east Asia
• South America

Far flung foreign climes with completely different eco systems and germs  – that’s pretty terrifying for a person with MG. Particularly someone who was immunosuppressed for years. 

But now feels like a good time because: 

• I’ve been in good health over the last number of months and years
• I’ve trained hard to get strong enough for the adventure
• I’m on very low medication meaning that I am able to survive without trips back for meds
• If not now, then when?

I plan to write this blog regularly when I’m away to show the highs and the lows of life on the road with MG. I’ve not met anyone with MG who has travelled for long periods and so I want to share my experiences about it (if you have, please share yours with me). But I’ll also be sharing general experiences of being on the road.

I’ll get into all the different aspects of preparation and the actual going over the next few blogs, but for now I have a 2 page to do list that will not sort itself! Pictured in preparation mode – testing my equipment in the Pentlands.

Extreme cold

This weekend I climbed Ben Nevis with one of my good friends. For most of the way, the sun was out and the air was warm enough for it not to be called ‘freezing’ (a rare day in Scotland). However about 2kms from the top, there was snow on the ground and due to exposure and wind chill the temperature dropped straight away. By the time we were on top, the wind chill was up to -11 degrees.

What does this have to do with Myasthenia Gravis? Well, when the temperature dropped my speech went funny. As in I couldn’t speak properly at all – my tongue and my lips felt too thick and the sounds I was making were slurred. My mouth seemed full of saliva. It was frustrating as I tried to communicate with my friend about our last stage of the journey.

Yet when we came back down, the symptoms disappeared as quickly as they had come on.

It wasn’t the first time this has happened. When my body temperature has dropped on other winter walks, it’s been the same thing. But this was the worst experience (possibly because it was the coldest) and helped me to recognise the pattern.

All the time I’ve been worried about my MG responding to heat – in the bath, in saunas, in hot countries – and I’ve never had any problems. But it seems that I’m not so lucky in extreme cold. 

I didn’t have any other weakness, but then again I didn’t hang around to find out what would happen to my body over a longer period.

Does anyone else have similar symptoms in extreme cold?

Down to zero

After 4 years of MG symptoms and 3 and a half years of the diagnosis, I’ve been given the go-ahead by my consultant to reduce my medication to zero. Nothing, nada, zilch.

Earlier this week, I gave my consultant an update on how I’d got on with going from 100mg to 25mg aziathioprine. The short version is that I don’t feel any different now – there was a time when I wasn’t sure between 75mg and 50mg as my symptoms were worse than they’ve been in a while. But I waited it out realising that a month between stepping down doses wasn’t long enough so I’ve been waiting 2-3 months between reducing my dose.

Now comes the real test – my next step is down to zero then down to 1mg of steroids every second day then nothing. So totally drug free. 2017 will be the year I tested going drug free.

This is what I’ve been wanting for years, what I’ve been working towards, but this week I’ve felt a little numb to it. I’ve not been sure how to feel about it so I’ve put off thinking about it knowing that I’m away this weekend. In the middle of nowhere, with lots of time to think. But now I’m here and I’m still struggling to feel it. 

Thinking about it, it’s probably because now comes the scariest part. The ultimate test of whether the thymectomy and healthy lifestyle (early nights, good diet and lots of exercise but not too much) will allow me to stay in remission. Proper remission. 

I’ve been told it’s fine to take 1mg if I’m feeling weak, which is a good back up. But when I finish my latest prescription in a few days time, it will be time to step into the unknown. Wish me luck!  

362/365 – First adventure of 2016

January has been sensible. A month of quiet, healthy weekends – lots of cinema, running and eating home-cooked, mostly nutritious, food. After finishing my last blog (on the lows of blogging for a year) Elaine and I decided to do something a bit different this weekend. 

We packed a bag and headed out towards the New Forest. By the time we arrived at our gorgeous hotel in a village outside Southampton, there was very little daylight left. We made the most of the facilities and headed to the gym and swimming pool to unwind after the busy drive. Lounging in the sauna, we promised that we would do this kind of getaway more often. 
Today, after another swim, spa and brunch, we set out for my first proper walk of 2016. 

After a failed walk in the New Forest during our first break together, the rain was not going to put us off today. Wrapped up and excited, we set off through a campsite overrun with wild horses and onto a muddy sand track. The first section of woodland seemed abandoned except from horses lurking rather magically in the trees. When we came to the first Heather plain, it was obvious why as the path turned into a series of islands to jump between in the bog. As we forgot the canoe, there was a lot of sinking into muddy puddles. 

Once we’d navigated the first stretch of the route, which was like the bogs of Mordor with dead people lurking in the puddles, we were able to properly stretch the legs. Then the dog walkers appeared out of nowhere and our route passed over undulating hills, gnarled trees and lots more Heather. We became rather nimble at island hopping and experts at spotting a solid piece of ground…or so I thought until I ended up calf deep in a puddle. 

We took a few wrong turns and ended up jumping across burns to get back to the car, but I heard a quote recently that I love:

An adventure doesn’t start until something goes wrong.

After a couple of falls and slips, we were muddy, wet and rosy cheeked from the slog of the route. But I’ll be taking the peace of wide open spaces and nature’s soundtrack back to London with me.

335/365 – Mountain challenge 2016

One of the many things I want to do in 2016 is climb the UK and Ireland’s four tallest peaks: Scafell Pike, Snowdon, Carrauntoohil and Ben Nevis. It’s been a lifelong dream of mine to climb Ben Nevis but as I drove past the mass of sharp grey rock earlier this year, it became clear that I’d need to be mountain fit to take on the challenge. As there aren’t many mountains to build up stamina near London, the idea came to try to see a bit of the country while climbing. 

I can now share that we have a date for our first climb. As part of Elaine’s Christmas, I’ve booked two nights in the shadow of Carrauntoohil and got to see her face light up about it last night. Before that, we will try to climb Scafell Pike and Snowdon so that we do them in height order. 

Am I worried about being strong and symptom-less enough to do this? Yeah, of course, but I have months to get fit enough. The thought of looking out from Ireland’s tallest peak, hopefully, is more than enough motivation. 

328/365 – Let it snow, let it snow, let it snow

For the first time this winter, I found myself wandering around in the snow. Starting out with the lightest drips it was barely even recognisable as snow this morning. By the time we were heading to the airport the streets were covered in slippery icing sugar.

The coldest day of the trip at -2, we found ourselves out in the snow for long spells during a walking tour of Sodermalm and a march along the river. It was not a day for standing still and even taking photos felt impossible by the end as it meant removing gloves from already frost bitten hands. On a day like this one, you can’t fit enough fikas in to keep warm. 

However, the lessons of yesterday about thermals and layering came in handy. I managed to be warm enough to enjoy the atmosphere and let the snow make me feel Christmassy rather than shivery for most of the day. And I’m sure the restaurant didn’t really mind that I had to take my boots off to get feeling back in my toes. 

God jul everybody and let’s get hoping for a white Christmas. 

273/365 – Climbing mountains and myasthenia gravis

The other day while considering 2015 so far, I had a realisation about what I want to do differently in 2016. The main thing I want to do more next year is climb mountains. 

I’m not planning to scale Everest or anything – like most people who saw the film with the same title recently I’d rather stick needles in my eyes. But the film has stuck with me more than others I’ve seen this year and my experience of scaling Goatfell, as pictured below, is one of my fondest memories of 2015.  

 
It’s not just the satisfaction of looking out across vast open spaces – it’s also the mental battle, it’s the silence and the way rhythmic steps encourage me to turn onwards, it’s the respect you show nature, it’s the lightness of clean air circulating around your body, it’s the moments of pause where you look out at the world and realise how insignificant you are. Oddly, there is nothing that makes me feel as alive. 

Other than fitness and my gammy knee, the main concern I have is altitude. I’m planning to climb quite a few mountains next year – more on the draft plan on a blog to come – but they will most likely be under the 1,500 metre cut off when altitude affects the human body. Still, the endurance on top of being over a thousand meters above sea is an unknown post MG. 

Say I do decide to clinb something higher – I’m intrigued about how altitude would affect my myasthenia. I plan to do some testing of that before embarking on any 4,000ft plus mountains in a false altitude environment and also asking my consultant for any first hand accounts. 

On top of that there is the fear about being in a remote place and not being strong enough to continue. I’ll need to practise my smoke signals and will definitely be climbing fully prepared.