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.

Altitude and myasthenia gravis

Today I’m stepping into the unknown. Not only am I flying from Chile – the most developed of the countries I’ve visited in South America so far (in my opinion) – to Bolivia – a country I know very little about and that has been described to me as the least European of all the countries in the continent. Now that’s an exciting thing in itself and the kind of description that sells a place to me rather than puts me off. But also the airport in La Paz, Bolivia’s capital, is 4,000m above sea level. We have eight hours here until our flight to the slightly lower Uyuni (3,600m).

General impact of altitude

It is widely acknowledged that the impacts of altitude start when a person passes around 3,000m – although some people start to feel it around 2,500m. This is because the air is thinner – it contains less oxygen. The higher you go the less oxygen it contains.

There is no predicting how and when it will impact a person but some common side effects are:

• headaches
• nauseous and/or upset stomach
• vomiting
• shortness of breath
• trouble sleeping
• tiredness

From what I’ve read it can take about three days or longer to acclimatise to the thinner oxygen.

Implications for myasthenia gravis

When I asked my consultant before taking the trip he told me there was no specific implications but I was to take care just as anyone else would.

Obviously the difficulty sleeping could trigger MG symptoms as it has done in the past for me, so it will be interesting to see how my eyes behave over the next few days. As you can see from the featured photo, I’m arriving strong with no physical eye symptoms.

However, from what I’ve read and I must remind you that I’m as far from a medical expert as humans come, that it might be particularly problematic if you’ve had lung problems or if you have an additional lung problem on top of your MG.

Experimenting by giving it a go

After a last minute panic at the airport and then on the flight, we are here in La Paz doing everything, including writing this blog, incredibly slowly. The only way to know how we’ll respond to this altitude thing is to be in it so armed with the names of drugs we can take to alleviate symptoms, we’re giving it a go.

We’re going to take it very easy – relaxing for the first few days until we acclimatise and then see what we’re fit for. We’ve got a nice hotel so that we can just relax and enjoy being in the desert; another new experience for me.

If things don’t go well, our plan is to skip the Salar de Uyuni and fly to Lima, the sea level capital of Peru, where we can take a meandering bus to Cuzco. This means a more gradual acclimatisation to the slightly lower Peruvian city (3,300m), from where we plan to spend a week exploring Incan history including Machu Picchu.

I will give an update on how we’ve found it in due course, but for now we’re off to enjoy the relaxation booths with Netflix that an absolute hero created in the La Paz airport.

A bad week in Uruguay

After five days in breathtaking Rio De Janiero and a couple of days on both the Brazilian and Argentinian sides of the Igazu Falls, we had a night in Buenos Aires before heading to Uruguay for carnival.

To get to Montevideo, Uruguay’s capital, we had to take an overnight bus from Puerta Igazu to Buenos Aires and then an early morning boat to Montevideo the next day. It was exhausting and I think the combination of the extreme heat, the lack of sleep and the different climates led to what happened next.

On day 1 in Montevideo, I had the start of double vision and felt pretty unwell. This developed rapidly over the next few days to the worst double vision I’ve had in years, a nasty headache from the swirling and really bad fatigue. Elaine said I was getting less and less like myself each day and the hours where I was fit to do anything kept getting shorter.

Still, we tried to enjoy the cool carnival nights in Montevideo.

This photo above is on our first night in Montevideo. It was the night of the main parade and here we’re climbing scaffolding to get a better view.

After five nights in Montevideo, we moved on to Colonia Del Sacramento, a former colonial town across the river Del Plata from Buenos Aires. Luckily, there is not much to do in Colonia, so I was able to relax there as I didn’t have much energy for anything else.

After a week of getting worse each day, although I had doubled my steroids, we caught the boat back to Buenos Aires a day earlier than planned to get some help.

I’ve now had medical care in a private facility in Argentina’s capital (more about that in another blog soon) and after upping my steroids and pyridostigmine I am feeling much better. However, this Uruguayan episode served to remind me that the MG is more of a sleeping beast than a distant memory and that I can’t take a day of being well for granted.

The photo for this blog is at the lowest point of my last episode where I wanted to hide away from the world. Thankfully in that moment, I had Elaine to keep my spirits up and pull me out of my self pity. So it has served to remind me how lucky I am to have her by my side too.

Despite this bad turn, the reason we are here – to experience other countries and cultures – is what kept me going. Here are a few of the amazing things we experienced in Montevideo and Colonia Del Sacramento. I hope the beauty of the country and its people is what I remember when I think back on our time there.

Travelling and myasthenia gravis

I’m back in Scotland after travelling around south east Asia with my wife Elaine and I have one thing to say to you: long term travelling is possible with a condition like MG. But more about that later. Over the three months, we spent time in seven countries:

• Nepal
• Thailand
• Vietnam
• Cambodia
• Singapore
• Indonesia
• Laos

Although many of the countries were neighbours, they were very different culturally and politically which meant there were big differences in how developed they were and, as a result, what the medical facilities were like. The last point would not be a consideration for many of the travellers we met along the way, but Elaine and I were constantly aware of how likely we would be to survive a hospital trip if it was required.

During my time in Thailand, our second country, I made a decision – that blogging about the trip was getting in the way of my ability to be in the moment. Often we only had a few days to truly immerse ourselves and I didn’t want to spend that time doing the reflecting that I felt might be more meaningful from a distance. So I stopped, hoping that I’d have a few things to say once back in Scotland.

Now that I’ve had time to process it all, I’ll cover different topics that came up during the journey over the next few blogs. I’ll be posting these between now and when Elaine and I head over to South America at the end of January for our final three month stint.

For now though I want to say loud and clear; travelling for an extended period is do-able for someone with myasthenia gravis (MG). I repeat, it is do-able because I definitely have MG and I’ve returned from three months away happy and healthy. Saying this, I had the go ahead from my consultant after coming off the drugs that suppressed my immune system and getting all the relevant injections. I would NOT suggest trying it unless you can get the same thumbs up from a medical expert.

Naturally, I was nervous about how I would cope and while I was planning I couldn’t find anyone with MG saying you can do this. But as travelling for an extended period to far flung continents has been a dream of mine since long before I was diagnosed with MG, I had to try. And I knew it was important to try while I was feeling healthy and strong as with this condition nothing is guaranteed.

Fine, I had to adapt my dream: from a solid year of backpacking down to two three month periods because I am still taking medication (prednisolone) and that’s the longest prescription I could get. I also won’t be able to go to any areas with yellow fever in South America (the Amazon for instance) because I can’t get the yellow fever jab as it’s a live vaccine.

Although it’s cost us more money to go and come back home and then go again, it’s given me time to catch up with loved ones, get blood tests done to make sure I’m really doing ok, to sleep in the same bed for more than three nights in a row and to recover my strength before the next leg.

I already know it’s the best thing I’ve ever done and may ever do. Don’t get me wrong: there were hard days and times when I wished I was back in the safety of my pest-free and tropical disease-free flat by the seaside. But then there were days when I felt more alive than ever before; like when we snorkelled with wild turtles in Indonesia and spent the day looking after rescued elephants in northern Thailand. These two things alone were worth every possible risk and will stay with me for as long as I live.

A photo taken on our rented Go Pro off the coast of Gili Meno, Indonesia.

So if there’s one big takeaway for me, challenge your I cants and be willing to adapt your plans to make them fit with your MG or whatever it is that you’re struggling through. There may be a way of making your dream come true if you’re flexible and brave.

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.

Trekking in the Himalayas

After a couple of days rest in beautiful Pokhara, I can hardly believe what the last week has entailed and how well my body has coped. 

When we decided to go to Nepal, we initially signed up for the Annapurna Circuit trek. This is an 18 day trek with 11 days of walking. However, neither of us have been above 3000m (the level that altitude starts to impact most people) before and the circuit trek reaches over 5000m. Our initial excitement was replaced by last minute panic, as I had no idea how much impact the lack of oxygen would have on my MG and the only option from some of the places along the way was to be helicoptered out. So we changed to a 6 day trek below 3000m – with equally stunning views and daily yoga sessions. 

Elaine and I joined a group of 4 lovely women to trek through squelching jungles and up the 2500m Panachassee mountain (Nepalis consider this a hill). Our daily schedule was a morning yoga class, a hike, an evening stretching session when we reached our destination and an hour of relaxation – mostly with the soothing singing bowl.

The Buddhist temple at the Panachassee summit.

How it went

Between the strength-based yoga sessions and the daily step count, I was nervous about how my body would handle its first challenge in an alien ecosystem. The walking wasn’t too strenuous – we spent between 3 and 7 hours walking each day. However we were battling a relentless sun, post-Monsoon season boggy ground, leeches, steep upward and downward ‘paths’, jungle insects, lots of creepy crawlies in our rooms at night, and, on one day, the heaviest rain I’ve ever had the pleasure of walking in (says something considering I’m used to walking in Scotland). 

The group also collectively battled a lack of sleep – from 2 nights before the trek I managed only broken sleep and this continued right through to day 3 of the trek. Because we were tired each night, we all wondered whether there was less oxygen above 2000m and whether this was impacting our zzzz time?! 

Our rustic accommodation in Bhadure.

Coping with sleeplessness

After another restless first night of the trek, I decided to double my steroid dose and take a pyridostigmine just in case. I only did that for one day as I felt strong and healthy during the other days.

When it came after 4 horrible nights, 6 hours of solid sleep left me jumping out of bed to embrace the day. I’ve never felt better than during the yoga session that morning in Bhanyajang – watching the Annapurna range appear and disappear behind the clouds and feeling like I could hold the poses for hours.

While it was psychologically challenging, the lack of sleep didn’t challenge my body as much as I expected. In fact, I’ve rarely felt better than during those five days of circadian rhythm and healthy eating. 

Back to basics

The accommodation was rustic, with Nepali rather than western toilets (essentially a tiled hole in the ground), cold water, no electricity for part of the trek due to thunder storms and, shock horror, no internet. However I adapted quickly and was a little upset when the electricity returned. Saying that, I was so grateful for a bucket of hot water during my last night in Bhanyajang that a few moans escaped as I tipped the water over my head and felt my tired muscles relax.

Our toilet in Bhanyajang.

All good things must come to an end

We watched the landscape change from a quaint mountain village with locals lounging and Tibetan women selling bright jewellery to woodland paths; from dusty tracks to open hillsides; from endless stone steps to dense jungle full of mutlicoloured butterflies; from fields of buffalo grazing to hilltop temples in the mist; from ridges with endless mountains in the distance and eagles swooping to rice and millet fields lit up by the warm afternoon sun. Finally we found ourselves back in a different village in the throws of Dashain celebrations – giant swings are made out of bamboo and bright coloured decorations on the streets.

By our 6th early morning of yoga back in Pokhara, my body was tired and I felt fatigued as we travelled to our new hotel. But taking a nap right away followed by a couple of rest days helped my recharge and I found myself back on my brand new yoga mat two days later.

Having loved Panachassee trek, I’m determined to try a longer, more challenging trek in the incredible Himalayas (with some kind of sleep remedy in my first aid kit). We’re likely to be above altitude in South America for a short time so it’ll be a good test to see how my body responds. Hopefully I’ll be able to tackle the Annapurna Circuit or something similar in the future as the thought of spending triple the amount of time out in that beautiful countryside fills me with pure joy. 

Walking through rice fields on our last day of trekking.

Travel vaccines and myasthenia

There were a lot of expenses for our extended honeymoon before we left home and now that we’re ‘here’, I’m not sure how many of them were necessary. The most important and least pleasurable pre-travel expense was the money for injections.

I spent around £500 on injections over a period of 5 weeks and felt like a pin cushion. While I don’t grudge money spent in order to keep myself healthy, it was difficult to hear that because of suppressing my immune system it’s not guaranteed that any of the 11 injections will work. Goodbye £500.

Still, like a reasonable non-stingy (cough cough Scottish) adult, I figured it’s better to have them than to leave myself open to a range of exotic diseases – most of which the pharmacist explained in far too much detail. He was who you should talk to if you never want to adventure beyond your bedroom. 

Side effects 

I was mostly fine after the injections excluding some heavy arms and the first three injection day where I felt nauseous and lightheaded. On other days I was able to go for a light run or swim on the same day as the vaccines. 

No can do

A vaccine that is recommended for the areas we’re travelling to and that I couldn’t get was yellow fever. As it’s a live vaccine, I wasn’t allowed to have it due to my thymectomy and immunosuppression – there’s a risk I’ll get the disease from the vaccine.

The mosquito-carried disease doesn’t have a presence in Nepal or south east Asia so I’m safe for now, but it has a grip on certain parts of South America including the Amazon rainforest. While I don’t need it for this stretch of the trip, I need to carefully pick where I travel to in SA. This unfortunately means minimising my time in Brazil. 

Instead of the vaccine, I got a yellow exemption card (pictured) which will hopefully allow me into the infected countries if not the infected regions. 

So while it was a ‘pain’ to spend so much on vaccines which aren’t guaranteed to work, as I travel to my next destination it brings me peace of mind to know I’ve done all I can.

Kathmandu, Nepal – destination one

Our first stop of the South Asian adventure is Kathmandu and there couldn’t be a better place to take me out of my comfort zone.

From trying to get a visa in the airport on arrival (3 separate parts of the process and each took an age) it became clear that we were on Nepal time, which took a bit of getting used to. 

Even as I write this we’ve been in a taxi for days (an hour and a half) endlessly stuck in traffic travelling from the Boudhanath Stupa back to our hotel. Still it’s given me the chance to people watch, write today’s diary entry, delete and edit my photos, write two blogs (well once this one is done) and do a good bit more people watching. As you can see, I’ve not quite switched into holiday mode yet. 

How do I explain Kathmandu? I would say both hostile (the head ache inducing pollution, the constant beeping, the piles of rubbish everywhere) and welcoming (the people and their hospitality, the variety of colours that just don’t exist at home, the amazing food). Add to that the incredible beauty of the many temples where people worship, the quiet spaces that people try to create in amongst the chaos and the unpredictability of it all, you have a slight glimmer of what being in Kathmandu is like.

On the way to the Buddhist stupa I mentioned above, here are just a few of things spotted in and around the roads:

Monkeys swinging from dilapidated temples, monks on mopeds, cows walking in gangs down the road, families of 3 and a kids bike on one tiny motorbike, a man counting money while he drives, goats and stray dogs making friends, trucks decorated with colourful patterns and necklaces, chickens chasing each other, a man taking a pee in a pile of rubbish beside our taxi…etc etc.

If ridding myself of western ideas of what society should be is something I want from this travelling malarkey, there can be no better place to start that journey than Kathmandu. Still it’s ok to admit that I’m looking forward to the peace and quiet of the mountain paths and tea houses right? Onwards to Pokhara for a 6 day trek.

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.

Treating a set back like an experiment

So it’s happened again – just when I started to feel completely unphased by my myasthenia gravis I’ve had a set back. This is the way with a condition that fluctuates but it doesn’t make it any less annoying. 

Two days before I was due to go on a relaxing break to Spain my right eye starting playing up. I had a good night’s sleep and it seemed improved but then, the day before I was due to go, I had a later night than expected and woke on my first day off with a bad case of ptosis – dropping – on my right eye. 

My ptosis is usually mild now – a slight droop which is annoying – so I’d forgotten what a bad case feels like. I count a bad case as when my eye lid is almost or completely closed. No matter what I do it can take days or weeks to right itself and in the mean time it makes everything a bit more of a challenge. It means:

• looking anywhere other than down becomes problematic – looking straight ahead there is double vision as the right eye tries to adjust with a more limited field. This means I spend most of the time with my head tilted up and have more problems getting around
• having conversations becomes challenging – you can’t really look people in the eye because when you try their eyes move around their face. Oh, and you over-analyse every look of your conversation
• the eye lid feels really heavy and is constantly uncomfortable – I used to wear cotton patches during these times for comfort. It’s not great when working in front of a computer screen all day

I’m fairly sure that I’ve run myself down in the build up to the holiday – taking on too much and not giving my body the rest it needs. Then there was the sharp change of climate and routine which probably didn’t help either. 

Rather than waiting in a depressed stupor for things to return to ‘normal’, I’m taking a scientific approach. I’m testing out the impact of different things and will hopefully have more knowledge about how to treat myself next time. So far I’ve tried:

• Sleeping longer than normal – on holiday I had between 9-10 hours sleep a night. This is more than the  7-8 hours I get normally. This seemed to make it worse rather than better.
• Cutting out alcohol – after a break from booze, I had slowly reintroduced it to my routine and was having at least 2 drinks a day on holiday. Over the next week I’ll be removing alcohol again to see if it has an impact
• Upping my steroids – I’ve upped my steroid intake from 2mg to 3mg and hoping that extra tablet will help. If I don’t see an improvement over the next few days, I’ll increase it again
• Eating healthier – while I didn’t eat a lot on holiday, what I did eat wasn’t particularly healthy. I’m on a detox this week to aid healing including keeping it simple with just lean meat and green veg and lots of lemon water
• Cut down on caffeine – before I went on holiday, I was drinking more coffee than I ever have. While away, I cut down to 1 cup a day and I’m going to try to keep a reduced intake now that I’m back
• Rest – on holiday I did very little that could be described as ‘active’ for the first two days. I then slowly reintroduced exercise – gentle walks and relaxed paddle boarding. Now that I’m back I’m going to do less exercise than normal this week 
• Heat – unlike many others with MG, I find heat from a sauna, bath or weather works well for my body. Now that I’m back in an Autumnal Scotland, I plan to use the sauna every few days (as I had just before the photo above)