Tag Archives: myasthenia gravis

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!

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.

183/365 – What’s next after 365 days of myasthenia 

As I’m now past the halfway mark in this year of blogging, I’ve been thinking about what happens after the 31st of December. While obviously nothing is certain at this point, and it may well be that this blog will remain a product of 2015, I’ve got a couple of ideas which I’m keen to see what you think of. 

I was thinking about:

A) Trying to get people with MG/OMG/CMG from around the world to do seven day stints of blogging about their life. Whether they wanted to do it anonymously, or in the same manner as I have, would be completely up to them. I thought with this, as a community we could try to push the following hashtag to continue to raise awareness of what it’s like to live with MG – #7daysofmyasthenia.

B) Trying to get a similar kind of blog, but again weekly rather than daily, linked to the myasthenia or muscular dystrophy charities.

C) Trying to get a column linked to a health magazine.

D) Keep the blog going but keep it sporadic – when and if I have something new/interesting to write about. 

At the moment, A) is my preference because I think it would be great to have a place to bring the world MG community together and share experiences. It would also showcase how different everyone’s MG is and how diverse people with the condition are. Obviously it would depend on having enough people up for writing for it – would you be interested? If you would be, can you drop me a comment below? 

If you think it could be something you would consider, I would be happy to help in anyway you need – set some guidelines, edit, provide advice about topics etc. 

152/365 – Death and myasthenia gravis

Talk about morbid…ok let’s do it. Who wants to read about death and myasthenia? Well I do – except that I can hardly find anything on it. Even the people at Myaware were not sure about statistics when it comes to death. You would think on holiday that it’s the last thing I would be thinking about, but because I can’t find the relevant information the thoughts creep up on me in the most unexpected locations (like a beautiful bright day in San Sebastián).

I’m a realist when it comes to death. We all have to go at some point and I know that due to my myasthenia it may well be that I die younger than others. Many people avoid talking about it, because they think not uttering a word about death keeps it at a safe distance. But, for me, it’s important to be regularly reminded that life is finite so that I remember how precious time is. I was delighted recently when I saw they are hosting death cafe nights in London and around Europe where you can go to discuss the ‘finer details’ of mort and your arrangements.

When my symptoms are bad, my love for life and the reminder that everything must end keeps me going. But I still haven’t found any research about death and myasthenia. I want to be more equipped for the possibilities. Call me morose but it’s a way of coping and giving myself the best chance of gaining extra time.

I also want to be prepared for what happens if my medication stops working and/or if my side effects get closer to the fatal possibilities,

A few months ago I saw a brilliant play called Happy Endings. It centres around a female chemo ward where a new patient arrives with stage 3 breast cancer. She hears the stories of the other patients, begins the preparations for treatment but decides that the remainder of her life really is too short to be spent in a stale ward. She heard the choices and went her own way, which the doctors would not accept initially. 

Due to the lack of available research and statistical information, perhaps the best option for me is to have the discussion with my consultant when I see him in a few months time. As someone who rarely minces their words, I will need to be prepared for what he has to say. If you have found any interesting research on this topic please feel free to share it. 

150/365 – Feedback so far

As today is my 150th post, I thought I would take a look at the feedback I’ve received so far while relaxing on San Sebastián’s Playa de la Concha. You may remember I asked in post 138 for readers to provide me with a bit of information on whether they have myasthenia or not and then answer a few questions. If you haven’t done this already, it can be done here. 

Thank you to those of you have contributed. 17 of you have responded to the question about whether you have myasthenia or not, with a split of 65% yes and 35% no. 

  
This is positive for me as I’m keen to reach people with myasthenia, and hope they’ll share their experiences with me, and those without so they learn about the condition. 

For the second part, 18 of you have taken part. 

The first question asked, after name and email, is how you found out about the blog. The answer provided an interesting split, with 6 people hearing about it through Myaware, 5 through word of mouth, 4 through social media, 2 through other and 1 through search engine. 

The second question asks if you feel you know more about myasthenia from reading the blog. All except one said yes which is extremely positive. The no answer (below) was also positive but gave me food for thought in terms of how I improve what I’m doing. 

‘Not really about MG, more about your experience with MG and how it relates to the things in your life, some of which I have been able to take away and use to my benefit. ‘

Finally, I ask whether you would feel more comfortable speaking to people about myasthenia about reading the blog. 14 people said yes, 3 said maybe, 1 said not sure and 1 said ‘not  if I didn’t have knowledge base I do’ which again has helped me with my plan for improvement strategy.

Next steps

Based on the feedback, I think to keep improving what I am doing I will create an information page about myasthenia and add a link to it at the bottom of each blog post. If there is anything you think should be included in this please let me know in the comments at the bottom.

On this page, I will link to other useful websites, support groups and also other blogs about living with the condition. If you would like yours included, please comment below or email me on laurnacr@hotmail.co.uk.

Thanks again for all your feedback and if you haven’t provided feedback yet it would be great if you could spend 2 minutes soon so here.

148/365 – Second experience of Camino de Santiago with myasthenia gravis 

This post is a day behind for two reasons:

1. I was mentally exhausted when I arrived in Pamplona after walking nearly 23kms in the dusty hot sunshine. Physically, however, I felt invincible.

2. Once I had showered and peeled off my very dirty trekking clothes for the last time, the only thought on my mind was a celebratory cerverza or ten with my favourite peregrinos.  

 
Lo siento. 

Read my other posts about the Camino de Santiago and walking here.

We finished our 70km section of the Camino changed from when we started – more assured in ourselves and stronger as individuals and as a group. As I mentioned on day one, apprehension was the main thing we collectively shared as we passed through the gates of St Jean. The road ahead was unknown, the terrain intimidating and the stories from this section frightening. On our last day, we were comfortable and confident in ourselves, and in each other, as peregrinos.

We had conquered the Pyrenees and coped with freezing fog, alongside navigating tricky paths in the baking hot sun. We became closer as a group as we endured the challenges, and shared each meal times, together. But on the last day a new element was added – we became the Camino choir. Cath came up with the genus idea of teaching each other songs from our native countries to block out the pain of the last 8kms. Our repertoire was a mixed bag including Scottish, Irish and Australian folk songs, along with the classic, the Quartermaster’s Store.

Back to point one – about feeling physically invincible. Sure, my knee is tense today and the masseus is going to earn every penny next time I see him, but I’m completely confident that neither of those things would stop me. My legs felt solid, my core strength work has paid off and my eye symptoms have improved significantly over the 4 days. I do realise that without medication I would be far from invincible, but as I’m reducing what I’m taking I hope that my strength comes from me alone next time.
I always try to figure out what has led to the change, for better or worse, and it is difficult to know with this one. Exercise should technically fatigue my muscles, but I find it usually improves my symptoms. Unless I’m exhausted for other reasons, I find myself stronger, with more energy and my ocular symptoms improved after physical exertion. So it’s probably partly due to that, increasing my steroids by 1mg, being more relaxed and finishing the dose of anti-biotics. 

Even after the hedonistic celebrations last night and the lack of sleep because of them, the double vision faded after a few seconds this morning and the ptosis has improved significantly. To stop the symptoms from coming back, I’ll need to live cleanly over the next few days and get lots of rest. But for now I’m still high on the achievement of completing yet another section of the Camino and from all the fun we had along the way. 

Further pilgrimages 

Although I’m sad the Camino is over for this year, having the confidence boost of being blister free (after splashing out on expensive shoes and socks) feeling my symptoms improve on the road and feeling physically strong has made me determined to do a longer stretch of the Camino next time. I would love to do the whole French Way, from St Jean to Santiago de Compostella, but the logistics of it are a challenge as you need between 30- 45 days and a lot of money. Having walked two separate sections now, last year I did Sarria to Santiago, I know that the shorter trips are easy to plan, a great way to spend a holiday and make it easy to appreciate each day as time is limited.  Even now, with my sore knee and tired legs, I can’t wait for my next adventure on the Camino.

147/365 – Tales from the trail

Following a delicious sit down buffet breakfast together in our hotel, for the first time all 10 of us set out walking together from Roncesvalles. Marilyn, Anais’ mum, had driven for the mountainous section but decided to try walking today. She is 72, a former pathologist, and I found out during the day she believes she has very mild, infrequent ocular myasthenia gravis which was triggered by child birth. Her boots and knees had been hurting her, so we were all a little concerned, but she is a strong woman and seemed determined. 

My double vision was getting a little quicker to correct itself in the mornings now – a relief as this was my last day of anti-biotics. The aches in my muscles felt weirdly good, like each one was a mini achievement. I felt ready for our longest day – 22kms of undulating forests, farms and picturesque villages.

We decided to stay close together for the journey and that meant getting time to speak to everyone during the course of the day. After a day of head down walking in the cold, wet fog the previous day, the relaxed pace and atmosphere was refreshing. As a group, we tend to enjoy a chat and many topics big and small were covered during the day. 

Alongside Marilyn’s OMG, myasthenia came up again when one of the gang told me a work mate had recently been diagnosed with it. She had suffered from a misdiagnosis I had never heard before – she had been told that she had a strange psychological eating disorder as each time she tried to lift something to eat she didn’t have the strength. She had to be off work for a while as she was too weak for it, but eventually got the right diagnosis and is now in remission following a dose of steroids.  

 As I walked listening to this story, I thought if I could have any Camino miracle, it would be this same thing happening to me. Perhaps it is too much to ask for this year, but maybe if we walk again together next year I’ll be drug free. There’s even talk of trying a full Camino in 2016…     

146/365 – Shapes in the mist

Following on from yesterday’s short but intense stumble upwards, today we had an ardous 19kms up and down the peaks of the Pyrenees. The picture of our route had us all a little intimidated, as it made the day before look like child’s play in terms of scale.

  
After not a lot of sleep due to a shared room of 12, my legs were burning and my knees fizzy during the walk to breakfast. It was only 800ms away, and quite a gradual slope, so I was a little concerned. Putting it down to the lack of medication, I rushed through breakfast to take them –  giving my body time to get to work before the endurance test. Thankfully by the time we started walking again, the fizzy heaviness had gone.

Although not true to the pilgrim tradition, I asked the lovely Marylne if she could carry my backpack in her car as did Elaine and Cait. We put our essentials in one light bag and headed on up and up and up.  

As we turned around the bend, freezing fog descended and did not leave us until we were 0.5kms away from Roncesvalles. I’m sure the scenery around us was lovely and, had we been able to see it, we would have stopped to enjoy the views many times. Sadly, I could barely see to the end of my nose and kept my eyes on the ground and looking out for markers to make sure we were still on track. In this kind of weather, a wrong turn was deadly.

There were a few memorable points of our 4.5 hour walk, like the gorgeous ponies that greeted us along the way and the off road sloppy stretches. Everything else was lost in the fog.   

When our path was blocked off with a danger sign, we took a longer route and worried that we were now headed in the wrong direction. We had been only 3.6kms from Roncesvalles but the road/path/slippery slope seemed to endlessly wind on. It turned out to be a long cut and finally we reached a church with a sign saying Roncesvalles was 1.5 kms away. The fog had started to lift by this point and we could see how lush the forest we were walking in  really was. 

 Entering the monastery settlement was a huge relief and to be met with such a glamorous hotel, after our freezing cold gite the previous night, felt truly decadent. There were towels, hot water, comfy chairs and a bed you could sink into. Plus the beds were already made with linen which smelled like lemon.

For most of the walk I had felt strong, in spite of being cold and tired. In the end I started to waver but was too cold to stop to take medication. I knew if I could reach the hotel, there would be something warm to wash my mestinon down with. I slumped into a chair struggling to fish out my pills. Like magic, five minutes later I felt human again.

My cheeks are a little weather beaten and I’m baffled by the extra freckles gained in all that mist. While my body is tired, and felt thoroughly challenged by today’s mission, I will sleep soundly knowing that I have now completed the hardest two days of the whole Camino. Pyrenees section of the Way complete – next up is lots of forest walking with the chance of a little sunshine. Scrap that – as long as the fog stays on the mountain, I’ll be a euphoric Peregrino.   
 

145/365 – First walk done by lunch

Meeting at 8am for breakfast, our group filled up on St Jean’s finest croissants, orange juice and, most importantly, coffee. Some of our group are not happy campers without coffee – to the extent that three of us paid 4.50 euros for cafe in a can just in case we can’t get our hands on any. 

I was a bit worried as I had had a troubled sleep the night before setting off and breakfast didn’t feel particularly substantial. My vision was double again, but I hoped, having taken my medication with a bit of time to digest before walking, that it would quickly get closer to normal.

    After a last minute purchase of a walking stick and a poncho, we headed off through St Jean Pied du Port’s main thoroughfare, averting the eyes from its array of cute shops selling tasty treats, through the seemingly ancient town gate’s and onto the road. 

    The first day was, as promised, spent scrambling up steep ascents. The first 5km or so was on little roads past farmhouses with the Pyrenees backdrop getting more spectacular with each bend we turned around. Soon we could look down on St Jean and hear the bells chiming. Then it turned into a muddy path, still at a steep ascent, complete with slip marks and sheep poo. Just as we said ‘this would be treacherous in the rain’, it started to drizzle. But after a light shower, it stopped and the fog seemed to part for a moment or two. We had climbed into the mist clouds that were widely admired earlier. 

    Just as we finished a really tough part of the upward slope, I shouted down to Anais what the name of the place we were staying was. Low and behold it was just on the next bend – Kayola. We had made it. No more climbing today, or at least until dinner which we had to walk 800 metres for. 

    Although it was only around 8-10kms, a two and a quarter hour walk, our clothes were sodden with sweat from the humidity and exertion. My calves were screaming to be stretched out, so Ruth and I did some yoga on the grass outside the house with this stunning view in the background. 

    Day one is complete but, from the flyer we got in St Jean, day two will be even tougher in terms of the gradient we’ll be climbing at. The sticks have come in handy so far and I expect are will be indispensable tomorrow. 

    Physically I’m feeling strong and my eye is beginning to look a little less startled. Perhaps a combition of the antibiotics and exercise. Once again, this year I find my pilgrimage is about challenging my body to stay strong while facing a tough test. One day down, three to go.