Tag Archives: travel

Going to hospital in Buenos Aires

After a frustrating discussion with travel insurance as I wrote about in the previous blog, I went to a Buenos Aires’ hospital to get help for my increased myasthenia symptoms.

As you can imagine, going to a hospital in a country where you only speak ‘un pocito’ of the language was frightening. I don’t think I’ve ever had such rapid deterioration and I had no idea of how to explain this or even if they would know of the condition.

Luckily, we found a private hospital where they had staff who could speak English. We went to the emergency waiting room thinking we should follow the same process as at home, but we were quickly redirected to the neurology clinic. The receptionists, although baffled by our ‘Spanglish’, were quickly able to establish that I needed a translator. Because it was so late in the day after all the messing around with the travel insurance, the translator had left however one of the staff members spoke enough English to help us.

Less than an hour after arriving, I was sitting in front of an empathetic neurologist who was telling me to relax and that I was in safe hands. My condition was explored and my symptoms documented – then the normal tests of muscle strength were carried out for the whole body (holding legs up, pressing up with arms, scrunching up facial muscles etc etc). The checks were more thorough than any I’ve had at home.

Having established that the flare up was only affecting my vision in terms of muscle strength, I was taken for blood and urine tests. The final tests were from a lung doctor to test if my breathing had been impacted. That was an interesting experience and not one I have had before – blowing as hard as you can into a piece of equipment like a breathalyser is bloody difficult. It gave me a lot of sympathy for anyone with asthma as apparently they have to do these tests regularly.

Finally I was asked to go back to speak to the neurologist. She was able to tell me within two hours of doing them that I didn’t have an infection and then we worked out a plan for my treatment.

The doctor prescribed me to increase my steroids to 10mg a day and two mestinons a day. If this had been in Scotland, I would have been disappointed to be jumping back up on the steroids. But when I was handed the prescription, I felt such a relief that I could have cried. I probably would have if I wasn’t so exhausted – by this point I could hardly keep my eyes open. And that night, for the first time in almost a week, I slept right through and woke up feeling a hundred times better.

I returned to the hospital for check ups after this and was given the same level of excellent care and support. Not only that but when I left, I was told if I needed anything to get back in touch and given the names of neurologists in the next place I was going.

While I know I was lucky to be near a capital city like Buenos Aires when this happened, I was very impressed by both the standard of care and the cost of the treatments. It may have been my travel nightmare up until the hospital, but as soon as I was in that neurologist’s consultation room I felt in safe hands.

The picture for this blog was taken outside Manzana de las Luces in Buenos Aires where I did a tango class a few days after the increased meds kicked in. Since those few days at the hospital, it’s been back to having fun and trying new things!

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.

143/365 – Chasing the sun (sensibly)

After a day of shivering in Biarritz, where the temperature was significantly lower than London and the sun was a fleeting visitor, it was decision time. Did we stay for another two days and feel time drag waiting for our friends to arrive? Or did we take a proactive step – leave our 4 star hotel with its jacuzzi bath and bathrobes for less fancy but with more sunshine? As we shivered over a coffee, our phones were put into overdrive looking for somewhere warm that wasn’t too far away. The closest place we could see that had a significant  temperature difference was Zaragoza – a place I knew absolutely nothing about but was only three hours drive. There was obviously an extra expense to consider, but Biarritz was expensive and Spain was not. After thinking about it for a couple of hours, we hired a car, book an £18 a night hotel and planned to set off the next morning.

Before we were on the road, there were a few faffs that delayed us from starting. But when we met a lovely Irish girl, who had just walked the section of the Camino we were about to, we knew we had made the right decision. She talked about the freezing cold that she couldn’t shake in the Pyrenees and about huddling around a fire a man had made on the mountain. Soaking up some sunshine before that inevitable bone-seeping cold seemed imperative. 

Watching the landscape change on the drive was incredible. From picturesque Basque coastal towns, we then spent an hour and a half powering through the Pyrenees. Their scale and the plummet in temperature up there became very real. Once we were through them, the land became flat and fertile before it changed to a more arid quality. The dust, the wind and the rows of high flats were my first impression of Zaragoza. Below is a railway bridge near the edge of the Pyrenees – you’ll see the change in sky here to Zaragoza below.

 
Once settled in our more modest hotel, which I’m pretty sure had a brothel attached, it was a quick change and out to make the most of our 24 hours in this sunny city. We found our way to La Aljaferia (a palace dating back to Moorish times and is the finest example of that kind of architecture outside of Andalucia) – well only as far as the park outside it but it was a fine view for sunbathing and reading.  

 
I had my factor 50 sunscreen with me, as mentioned previously in this blog, my immunosuppressants increase the risk of skin cancer so I must always be careful. 

You would think that that risk would put me off being in the sun, or at least enjoying it less, but it has not. I’m still aware of how much better I feel after soaking up some Vitamin D – I’m just a lot more careful now about not overdoing it and making sure I’m covered up.

Lying in the grass with bare feet and ants exploring our legs, Elaine and I looked at each other and smiled. We had made the right decision and we would start the Camino better for it.

    

132/365 – Travel insurance and myasthenia

As I jet off for France in 7 days time, I figured the time is right for sorting out travel insurance. While I was never particularly bothered about having it for trips to Europe in the pre-myasthenia glory days, now it would be very silly not to cover myself. Particularly as we are going to be walking in the Pyrenees. I reckon my mum would find a way to stop me leaving the country if I didn’t – or, if I slipped through, she would hire some French/Spanish farmer to track me down with an insurance certificate in hand.

Last year I used Unique travel insurance to cover my Camino trip. I remember the call with them vividly – before I even picked up the phone I was terrified that they would say they couldn’t cover me. Or worse, that the insurance would cost an arm and a leg (can see where this Scots saying comes from now – I would have had to sell body parts for a hefty fee).

However, the woman I spoke to was warm, reassured me that I was fully covered for my walk and, after taking all my details, only charged around £30 for the privilege. No limb removal required.

Having checked the same company out again, its price remains roughly the same for this year – with a gold or platinum option available. For research purposes, I decided to check out what else was available via My Holiday Insurance. Unique was still the best option in terms of price and specific breakdown so I’ll get myself booked up with them shortly. Once I do that, I’ll know the practicals are out of the way and I can start counting down the days for French beach time. That’s the only thing getting me through this dreich day. 

114/365 – 36 hours in Paris

We are finally on the overnight bus back to London. This is after a two hour wait for a new bus to come when the one we were meant to be getting was deemed unfit for purpose. Apparently there was an issue with the windows – that’s why we were left sitting on the ground outdoors at Port Mailot bus park until 12.30am. Thankfully the weather was clear and it was still quite warm – we also had some good chat and shared beers with fellow frustrated passengers.

Excluding the second eventful Megabus journey in two days, I had a lovely time in Paris and felt great for relaxing in the sunshine. After the delayed start and on-off sleep during the journey, I was expecting my symptoms to increase. Thankfully my body worked with me and I felt strong throughout the 36 hour period. 

Day one

After we got freshened up in our chic hotel, we made our way through the salubrious streets of Pigalle to the Moulin Rouge and then climbed to to the Sacre Couer (below).  

After wandering in Montematre village, we headed towards the Eiffel Tower. Sarah climbed it while I found a spot in the grass to read and relax. The tiredness began to set in and I realised I was ready to go back to the hotel for a rest – plus there was a bath in our room which had my name written all over it.

After soaking in the tub for a long time, I emerged to find my travel buddy passed out. A bit of Iggy Azalea soon woke us up as we took our time getting ready for our one and only night in Paris – the half bottle of red wine I had treated myself for a whole 3 euros was getting me in the mood for more. 

We headed back towards Moulin Rouge and, as Sarah was keen to try some French cuisine, we chose Le Chat Noir which had all the must try’s – escargot, frog’s legs, duck confit and steak tartare for me.  


  
Meeting a lovely couple from Sheffield, we nearly ventured with them to Bastille but it was already midnight and we had our eye on somewhere near by…a karaoke bar. And so that’s how we passed the next three hours – singing and dancing to many classics (and some unknown French songs). We each had a solo, Sarah with Like a Prayer and me with a bit of Shania Twain. Then collectively we killed Stevie Wonder’s Superstitious but had a blast doing it. The evening was topped off with Sarah blasting out Eminem’s Lose Yourself. We were singing all the way back to the hotel.

Day 2

Lying in as late as we could to make breakfast, Sarah opted for longer in bed and I demolished fruit, yoghurt, pastries and crepes. I knew I would need lots of energy as our main plan for our second day was exploring on foot.

We started at the Jardin de Luxembourg, exploring one of the most beautiful gardens I’ve ever visited. 

  
We then walked through the Latin quarter to the Seine along to Notre Dame. After a quick queue, I took a seat with a view of the main altar and considered all those who have come to worship and admire with hope in their hearts over the several hundreds years. Again it made me think of all the things people with myasthenia can learn from religion. 

From there we walked back along the Seine to the Tuilleries, out into Plaza de Concorde and then along the Champs Élysées to the Arc de Triomphe. The sun was high and warm, so I was making sure to cover myself up completely and keep in the shade as much as possible. 

By the time we reached the Arc, it was almost time to head back to pick up our bags. There was just long enough to admire the intricate friezes of classical rulers who inspired Napoleon.   

As only to be expected for those familiar with the company, there was an issue with our Megabus on the way home – as there had been on the way. This meant we ended up having an hour and a half picnic on the Tarmac of the bus ‘station’ with some fellow passengers – Snow White from Disney land Paris, a New York musical theatre fan and an Orcadian freelance journalist heading home to cover the election. 

After a difficult night of on and off sleep, we got back to London at 9am and headed straight home to bed. It was only when we woke up after the nap that we were able to speak about the fantastic time had. Believe it or not, we even said we would consider doing the megabus again because at least we had plenty stories to tell. 

While I couldn’t do it regularly, making sure I got enough rest in the build up to Paris and taking time to relax meant the overnight journies didn’t affect my experience. Paris j’taime and I won’t leave it so long next time. 

  

112/365 – Bonjour Paris

As I described in yesterday’s post, last night was my first over night bus journey since being diagnosed with myasthenia. Calculating the amount of sleep you get on an overnight bus is near impossible. It comes in minutes rather than hours, it’s fickle and frequently broken by noises, both human and mechanical. When a rare comfortable position is found, you drift into such a deep sleep that it feels like you may never wake up. When you do it’s with a fright. You find villains – talkers, snorers and rustlers. You also make friends – those also enraged by the villains.

Our journey was 13 hours rather than 10, with a ferry crossing starting at 2.30am. Nothing for it but a nightcap (see below). While not great for the MG, when we returned to bus I slept for more than two minutes at a time because of my cerverza.

 
Although Sarah and I mentioned seeing the sunrise, we slept through it and woke up to blinding French sunshine. By the time we reached the outskirts of Paris, eating some breakfast to take my medication was priority. At this stage, dazed and confused about how the past hours had flown by, we both realised that, dare we admit it, we were feeling ok. Good even. Now we’ve made it to our Pigalle hotel, we’re ready to take Paris on in the 35 hours we have to share with the city.   

111/365 – Overnight bus to Paris

A while back my friend Sarah and I had the genius idea to go to Paris together. It’s only two hours away from London on the Eurostar, she’s never been, I love it and it just so happens she had booked to come down in April – coincidence, I think not. The logistics ( read price tag) however were not so lovely. Unless you book months in advance, Eurostar seems to be only for people with money to burn. Sarah and I are not part of that throwing cash away gang. Flights were almost as bad with the added expense of the train to London’s airports. There was only one viable option – a 10 hour megabus overnight both ways. Why not, we thought. We’ve got the time and overnight travel means no spend on accommodation. It’s kind of perfect, meant to be….

We’re on our way now having ‘checked in’ at the Megabus desk in Victoria station.  

Two hours in and I already have a numb bum. Plus there’s a 2 hour delay due to congestion at Dover Port – not all bad as it means we’ll be arriving in Paris at 8am rather than 6am. 

  
This overnight travel will be a real test for my myasthenia. I’ve not done an overnight megabus since before my diagnosis due to the fatigue involved. As I’m currently stepping down the steroids, I’m going to try to get as much sleep as I can to compensate. Still it will be interesting to see whether my body is affected.

If it is affected, I’ll be in one of my favourite cities in the world. If our check in isn’t first thing I can find one of many amazing parks, like below, to relax in tomorrow or perhaps find a good spot beside the canal. The best thing is when I wake up I’ll be in PARIS…and there will be French coffee and pastries and sunshine. 

  

56/365- Copen-haven’t yet

Excuse the terrible wordplay in my title but I want to cut straight to the chase. Sometimes two intelligent people (well…we have degrees and challenging jobs so I’m going to pretend) can only look at each other and laugh at their own stupidity. Yesterday, Elaine and I had one of those moments as our train pulled into Stanstead airport and we remembered that we were actually flying to Copenhagen from Gatwick. In fairness to us, we are flying back into Stanstead..but still. As hovercrafts are still a thing of the future, and we didn’t feel like nabbing a plane and crew to fly us across London, it was better to admit right away that our flight was a bygone. 

We holed up in the Scandanavian-esque Costa coffee to look at our options. Of course the cafe had no signal in an airport full of it, but eventually we got connected to the airport’s wifi (for the small price of giving it unlimited access to spam our mailbox). The options were sparse. There were no flights that didn’t include a stop over on Friday and the next best option wasn’t until first thing Saturday morning from Luton. Noooo…not Luton. The same Luton that takes a lifetime to get to from, well, anywhere.

After checking out some rather extortionate options, we bought the Luton flights knowing that it would only cut into our Copenhagen time by a few hours. Also, thank goodness to Easyjet the flights were pretty cheap. Now we had a way to get our weekend break, and had decided to make the most of our first night ‘away’ by booking a glamourous airport hotel, but how did we get to Luton?

Although it’s only an hours drive from Stanstead, my Citymapper app suggested it would take 112 minutes on public transport and neither of us had our driving license to hand. Taxi…that’s a bit extravagant right? It was £75 private hire which is less than it would have cost us both to take public transport. Pretty disgusting really. 

Thankfully our cabbie was prompt and knew shortcuts to avoid the Friday night rush-hour traffic. He also didn’t mind making a toilet stop for the small price of a cappuccino. 

By the time we reached the Luton Ramada, I felt sick from all the excitement (and possibly the mini eggs). I had a lie down before dinner in the hotel – the option of heading into Luton was mooted and quickly dismissed considering the 5am alarm. (Below is our hotel in all it’s glory this morning)



Like all travel misadventures, yesterday was all about what we made it. We spent the night catching up and chatting about things big and small, from the Assyrians to Beyoncé, over a lovely steak dinner and glass of Pinot noir. What we had decided would be an early night turned into a late one as we continued yapping over a night cap. Although the view outside was of a motorway, we could have been in a million more scenic spots and it really wouldn’t have mattered. 

I’m feeling drained today – from the stress of yesterday, the late night and the early morning – but mainly I’m bursting with excitement as we are just about to board our flight. Because of the mishap, arriving in the Danish capital is going to feel even more special now. 

Happy Saturday everyone!



35/365 – Myasthenia travelling woes

As I’m on a train at present, to get to a workshop in Nottingham, it seems like an apt time to write my reflections of travelling with myasthenia.

As someone typical of Generation Y, one of my passions in life is visiting different parts of the world. I love nothing more than trading travel stories and recommendations and getting lost in new places. Although my dog phobia has caused some problems in the past, I’ve always managed to find ways around it and I plan to do the same with MG.

In spite of missing the ‘gap yah’ phase, and my parents partiality to a package deal over a city break when I was growing up, I’ve crammed a lot of exploring into my 27 years. There are only 15 countries in Europe I haven’t been to (Romania, Bulgaria, Albania, Lichenstein, Estonia, Slovenia, Slovakia, Switzerland, Belarus, Latvia, Lithuania, Andorra, Moldova, Macedonia and Denmark…although I’m soon to make it 14 when I go to Copenhagen for my birthday next month).

I’ve seen most of North Africa, a good chunk of North America, a bit of Canada, made my first trip to Asia last year and plan to see as much of South East Asia, South and Central America and Africa as I possibly can.

I’m proud to say I’ve also seen a lot of my own Bonnie country and would have to agree with tourists that, despite the weather, Scotland is one of the most beautiful places on Earth. All of the following photos are from my homeland.

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I would love to visit everywhere at least once but, even with my can do attitude, I’ve just about accepted that it won’t be possible. However, I’ll be damned if I let MG be a reason to stop me from making the most of my time on earth.

The first real concern I had with MG abroad was when I was in Istanbul and my voice went funny for the first time. Thankfully, Elaine and I were at the airport preparing to come back to London, but I panicked a little. The main reason for this was that I didn’t have any decent travel insurance. I realised that if it had been the start of a myasthenic crisis, I would have been screwed.

Following on from that, the next big trip I took was for the Camino de Santiago which I wrote about on 22/365. Apprehensive about the endurance test ahead, I realised that making the travel insurance mistake again would be reckless and selfish. So, thanks to a recommendation from Myaware, I called All Clear Travel tto book my cover for the week long trip. I was pleasantly surprised that, in spite of the physical challenge, it was no more than £30 (although the exact cost escapes me). However, the woman did say that after a certain altitude they wouldn’t be able to provide insurance – this is concerning due to my dreams of trekking the Inca Trail. That’s something to worry about in the future.

Other than that, and medication being my first priority now instead of books, I’ve had a pretty smooth time with the travelling I’ve done so far. But the challenges lie ahead.

Speaking to my consultant about my desire to go beyond Europe next year for a bigger trip, he informed me that if I’m on aziathioprine, or any kind of immunosuppressant, I won’t be able to get live vaccinations. This is because without a robust immune system to fight off the vaccine, there’s a chance it could spread. So essentially by getting the jab, you put yourself at risk of contracting the disease.

From what I can see, yellow fever seems to be the most problematic for me as there are many countries in South America and Africa that recommend the vaccine. From the World Health Organisation guidance, it looks like there are areas within these countries that are safe but I’ll need more guidance on this.

Also, I will need to find malaria tablets that don’t include quinine as it can increase muscle weakness.

My consultant also mentioned that if I ever did want to go away for longer, the longest he could provide a prescription for is three months. While that isn’t an issue at present, it is useful to know for the future.

The last thing is, with my superhero powers, I also have the fun task ahead of trying to communicate with non-English speakers that I have metal in my chest from an operation when going through security scanners. I need to find out whether there is a card you can carry for this to make life easier.

All of these things can be worked around – I’m hoping to come off the immunosuppressants eventually which would solve the live vaccine situation. I don’t plan to be away for longer than a typical holiday so that solves the prescription issue and I’m sure there will be something I can do regarding the metal in my chest. The most important thing for me is that the focus of travelling is still on fun and adventure, and not on the practicalities. While I do need to consider the practical details, I hope they will always be secondary.