151/365 – Smoking relapse

The cigarette I always enjoyed most during my years as a smoker was the summer one in the sun with a drink in hand. It completed the state of relaxation and it’s the only time now that I still crave to have one. Until I have a packet of Marlboro Lights at my disposal I’m never fully relaxed and occasionally I cave in to the craving. This normally has to do with my state of mind – if I’ve been extremely busy, stressed or upset about something, I’m much more likely to give in. Or if I am with someone who smokes. While I have been relaxed and happy on this holiday with my group of friends, one of the dream team smokes. Alongside the perfect conditions of lots of sun and lots of cervezas, I caved many times. 

Smoking and myasthenia

When I first learned about having myasthenia, I was encouraged to stop smoking by my consultant as it aggravates auto immune conditions. After a period of self destruction, I more or less did only occasionally giving in when I have had a drink. 

My friends mum, who is a pathologist, told me on this holiday that smoking is also thought to cause auto immune conditions. This was the first time I has heard it. So actually I may have myasthenia in part because of my years as a smoker. 

Why continue?

Like any addiction, it takes incredible strength of mind to quit. After Christmas I cut down the amount of sugar I was eating and managed to maintain this for several months because I wasn’t working and had plenty of time to plan what meals to eat and to research what sugar does to the body. Before I finished up work, I was incredibly busy and when I get into that state I find it hard to say no to the easy pick me up of sugary snacks. Cigarettes are the same for me. I need to have a clear reason in my mind, and the mental strength to reinforce it, if I am to say no to my cravings. While I haven’t been stressed on this holiday, there has been a residual amount left over from the weeks before I finished work. This meant I gave in again and again without any kind of fight. 

No more smoking 

While it would be unrealistic to say I will never smoke again, I don’t want to feel like a failure if I do, from today onwards I am going to try to fight back if my nicotine cravings kick in. To help with this, for the next few months, I’ll try to avoid being out for a drink with anyone that smokes. Thankfully that is very few people in my life. Avoiding putting myself in this situation should help initially. I’m also going to do some research about better ways of coping with stress and get back into my fitness regime when I get home. The fitter I am I find the less I want to smoke normally. Hopefully, the combination of these three things should stop any further relapses. 

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.

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. 

 

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.

    

142/365 – Myasthenia gravis and that startled look

You know when you get a shock and your eyes do that startled thing – that’s how my right eye has looked for about 24 hours now. As a result, a few other people have had the same startled expression when catching my eye. 

When I woke up this morning, after more than the recommended eight hours sleep, I was sure the eye would have dropped the frightened reaction. Alas, it appears to have become more scared over night. 

It took about an hour for my vision to adapt from double to normal this morning. Thankfully since then it’s been fine, but as a result I’ve upped my steroids by 1mg to see if it makes a difference and am going to continue with the anti-biotics. I’m also going to try getting earlier nights over the next few days and avoid mistakenly (honest) ordering a karaffe of wine. I mistook 50cls with 50mls and had a jolly good time last night. 

Until there is an improvement I shall be keeping my sunglasses on to avoid scaring children (and myself when I look in the mirror).