Tag Archives: Camino de Santiago

153/365 – Post Camino resolutions

As I discussed on day 140, Elaine and I spent time once we arrived in Santiago de Compostella last year writing separate lists of what we wanted to do differently on our return home. I found mine just before coming away and overall it made me feel positive about the last year. This year it took a little longer to process lessons learned as we were busy in the aftermath of the walk. Yesterday, on the beach in San Sebastián, I spent time thinking about what changes I want to make following this trip. 

Alongside quitting smoking for good, the two other ones that relate to myasthenia are:

1. Find healthy ways to cope with stress 

Stress is a trigger to increasing symptoms of myasthenia, and I realised how unhealthy my methods of coping with it have been recently. I have been resorting to drinking, binge eating unhealthy foods and occasionally smoking to cope. These are all further detrimental to my health and the myasthenia. Alcohol especially prevents good quality sleep, which is especially important for someone with MG. 

If anyone has useful techniques or any websites/book you would recommend on this subject, please feel free to share. The vast amounts of information available about stress make it hard to know where to start.

2. Better diet 

As mentioned above, my diet has been affected by stress of late and I’ve been eating an unhealthy amount of sugar, processed food and gluten/dairy. I’ve also not been making time to cook foods with the nutrients I need. While I don’t think I will return to a full dairy free diet, I plan to completely eradicate gluten, cut out the majority of dairy, significantly cut down on sugar and try to eat low fat protein. 

The others, joining the Spanish club at work, beginning weekly dance classes with Elaine and getting out of London more often for walks, are less relevant. They do however focus on quality of life and will only be possible with a better work-life balance. 

149/365 – Things people with myasthenia gravis need for the Camino de Santiago

Having now done two stages of the Camino de Santiago, I thought it would be useful to compile a list of things anyone with myasthenia gravis who is considering doing the walk, or indeed any hiking, should consider taking. This compliments all the standard things you should take like good quality hiking boots and socks, a comfortable backpack and a pack of cards.

Medication 

Bit of a no brainer really. As with everything you do in life, the first priority has to be medication (unless you are one of those very lucky people in remission). Make sure you take enough with you for the whole journey as it is likely there will be many places you stay where there is not a doctor nearby. 

Walking stick
If your vision is affected, one or two walking sticks will help with your balance as some of the paths on the Camino are quite tricky to navigate. Also, if your muscles are weak, they will give you an added boost. 

Factor 50 sun cream and a hat

If you are on aziathioprine your skin will be thinner and more prone to skin cancer so protecting yourself is essential. As most of the Camino is in Spain, it can get very hot and there are many stretches that are very exposed. 

Good quality sunglasses

The sun is strong in Spain and you will be spending a lot of time in it so invest in good quality sunglasses that will protect your eyes.

Light long sleeve tops and trousers 
For the same reasons as above, long sleeve tops and trousers are useful for keeping your skin covered. As it gets very hot, it’s a good idea to get the walking trousers which can be unzipped as shorts. For the same reason, light weight long sleeve tops are important. There is also the option of UV protecting tops which a doctor friend of mine recommended.

MG card and/or a label for your bag
If you plan to do the Camino on your own, or with people who don’t know about your condition, it is important to carry your MG card in case of emergencies. Also, another idea is have a tag on your bag that alerts people to your MG so that they know right away if something goes wrong.

Quick breakfast snacks

Sometimes you may have to walk for a while before breakfast so it is worth taking something you can eat right away if you take your medication first thing in the morning. 

Ear plugs

I would recommend not sleeping in dorms as sleep is so important for strength and from what I have heard it is a struggle to get much in the large dorm rooms. However, if you feel this is an essential part of your Camino, it is probably worthwhile investing in some earplugs. 

Tennis ball

Like a compact foam roller, tennis balls are brilliant for massaging aching and tired muscles. They can be used when you are on your own against a surface or someone else can use them for you but they definitely help your tight muscles relax and recuperate.

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.

    144/365 – Let the Camino begin

    After four days of rest, our group of 10 is ready to set off on the first stage of the Camino De Santiago – from St Jean Pied du Port to Pamplona. 

    After a lovely dinner in St Jean last night, we met early this morning to have breakfast by the river in one of the cute cafés. I do wonder how far one croissant will take us, but the coffee was sorely needed. 

    Physically I’m feeling really strong and full of energy after the few days rest. Psychologically I’m feeling a bit on edge – I had a sleep full of nightmares last night which I’m putting down to first day nerves. Once we are one day down I’m sure it will be better as I get into my stride and remember that I’m strong enough to cope with the challenge ahead. 

    I’ve promised that I’ll be honest about how I’m feeling and it will be interesting to see how my body fares this year compared to the final section we did last year. 

    Over the next few days my signal might not be great but I’ll try to post as and when I can.  For now, I leave you with the view from our balcony in St Jean this morning. 

     

    135/365 – 22kms of East Sussex countryside

    With just a week to go to the Camino, this weekend was the last opportunity to clock up some miles before following the yellow arrows through the French-Spanish border. Leaving the house before most people even roll over on a Sunday morning used to be a weekly occurence for me in my football-playing days. However it’s rare these days and I struggled to get out of the door in time to meet our friends for the long drive ahead. 

    By midday we arrived in Crowhurst, East Sussex, bursting for the loo and with nothing but a church and a closed train station in sight. Thankfully a kind minister/priest/vicar let us use the facilities (I would highly recommend if you’re in the area). Much relieved, we set out on our 20/21/22km trek (depending on what book/app you use). With the sun warming our faces, many striking panoramas and a reasonably flat gradient, the first 10km flew by and before we knew it we found a seat in the sun and were tucking into Westfield’s finest fare, and cider, at the New Inn. 

    After hearty lunches, the second half was a bit trickier. Thankfully the views were even more striking as we carefully manoeuvred our way through bluebell meadows, burrowed through enchanted woods (at one point expecting a wicked witch to jump out), gazed at thatched mansions and then had to battle our way through thick nettles for hundreds of metres.  

    Despite our more adventurous second half, my knee and the myasthenia behaved well. By the time we reached the last climb, I still had plenty of energy, my muscles felt strong and my feet showed no signs of blisters. Time to celebrate with a pint! 

    As I supped my celebratory cider, in Battle (of Battle of Hastings fame), a smug smile spread across my face. My cross training has paid off, I am strong and I am ready – Pyrenees, come at me.  

       

    128/365 – 15 days until the Camino begins

    I completed my first mini duathlon two weeks ago today and the next physical challenge on my list is only 15 days away. On Monday 25th of May I’ll be setting out with nine others to walk 65km of the Camino de Santiago. While significantly less than the 120kms Elaine and I trekked last year, the challenge will be the terrain – the rough paths and slopes of the Pyrenees. 

    The first day is meant to be the toughest of the French way because it is a near constant ascent until you reach Ronascevalles 26kms away. As some of us have health conditions/dodgy knees (in my case both), we’ve split that first day in two. That means we have a build up of distances – 10km, 16km, 22km and then 20km for our last day. These chunks feel manageable – particularly if we set out early and take breaks on the tougher days. 

    While I haven’t had many opportunities to get out of London for long walks this year, I have been building my walking fitness most weekends and doing strength training for my legs and core. I have no doubt the mountains will challenge me, but I’ve promised Elaine that I will be honest about how my body is feeling. 

    With the days flying in now, I am going to get out for one of my last long city walks today. Sadly there are no mountains to scale but perhaps I’ll route in a couple of flights of stairs and hills if I can find some. 

    121/365 – Wet and wild walk

    With three weeks today until we set out on the Camino de Santiago, Elaine and I decided that this weekend we needed to get out walking. The Scottish weather had other ideas. 

    We were up visiting my friends and family in Edinburgh so I had looked at routes in the Pentland Hills to mimic the undulation of the Pyrenees and the Fife Coastal Path to get the much needed miles up. When we woke up yesterday to the rain chucking down, both of those options lost their appeal and we decided to stay much closer to home. With inappropriate clothes on, jeans and rain are a terrible combination, we only lasted 10km before our soaking wet clothes got the better of us. The only thing that could make it better was a wee dram to warm up.  

     
    As I’m off to Rome next weekend, time is of the essence to get walking fit. This week I plan to spend as much time walking, and as little time on public transport, as possible preferably with my hiking shoes on to make sure they are properly broken in. I’m just hoping the weather decides to work with me in my drive to clock up the miles!