Category Archives: Fitness challenges

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!

A week at altitude

Since my last post about stepping into the unknown of altitude in Bolivia, I have explored the Salar de Uyuni, spent 24 hours in Bolivia’s capital city La Paz and travelled to the former Incan capital of Cuzco – all of which are 3,400m or above. In this post, I have broken down my experience with altitude and myasthenia gravis into a daily diary covering the first seven days.

Day one

Landing at 4,100m in the La Paz airport, the highest international airport in the world, was a shock to the system. We had a day to spend there before our evening flight to Uyuni and considered getting a taxi to the lower city centre (3,660m) to make life a little bit easier. But on arrival, we found a hotel in the airport where you could pay by the hour… at this height, to conserve energy.

Observing my symptoms closely, I noticed that first came a flush to my cheeks and my skin stared tingling. This was followed by a slight tremor of the heart as if it was shaking with uncertainty and then a burst blood vessel in my eye. Next, the delight of an upset stomach. While all this was happening, we were having a Netflix binge while lying sprawled in the hotel room.

After 8 hours at that height, I was feeling rather spaced but nothing else more serious than the symptoms above. I could feel my circulation working a bit slower than normal as my hands and toes were cold and my lips had turned a strange purple shade.

My appetite had disappeared but we had read that you should make yourself eat as your body works harder than normal at altitude. After some chicken salad, I felt a sudden energy boost – a pattern of eating and feeling better that continued for the next few days.

The flight to Uyuni gave us a break due to the normal oxygen levels on planes. Once back on steady land, we were at the slightly lower altitude of 3,600m.

Day two

During a broken but not terrible night’s sleep, I felt my heart working harder than it normally would so I had to lie on my right side. I woke to find my face puffy and my pupils huge. My body was tired but not weak -I was hungry and I woke up with a thirst as if I had been smoking and drinking all night.

We allowed ourselves to have a day of rest to acclimitatise. This meant barely leaving the hotel and walking everywhere very slowly. After breakfast I felt better although my lips were still purple tinged.

While we lounged about the hotel reading, the fires were roaring but I couldn’t get warm. Putting on all the extra layers I had didn’t really help as it felt like it was coldness coming from the inside out. The hotel had a sauna and jacuzzi but I didn’t want to risk the extra pressure of heat on my body, so I had regular hot chocolates (caffeine and alcohol were advised against).

By 9pm I couldn’t keep my eyes open and passed into a coma-like sleep.

Day three

I slept like a log and woke up feeling nearly normal although my face was still a bit puffy and my lips still had a purple tinge.

After another relaxed morning and a FaceTime with some friends (which would have tired us out the day before), we went for a tour into the Salar De Uyuni.

Walking very slowly between the stalls in Colchani, between the Dakar monument to the salt hotel and then posing for lots of silly photos (see below) tired me out, but it was totally worth it. I found myself slightly breathless after doing a yoga pose, but thankfully I was able to catch my breath quickly.

We spent the last hour and a half having a picnic watching the sunset and taking our first taste of alcohol since arriving in altitude. My body told me clearly ‘don’t overdo it’ so I kept it to a small glass simply to enjoy with the best sunset I have ever witnessed.

Day four

After another good night’s sleep – deep and restful but with some crazy dreams in the morning – we flew back to La Paz.

Instantly on arriving back at 4,100m I felt the thinner air and the pollution speed up my breathing and heart rate. As we slowly descended with the taxi into the incredible city, which is in a valley surrounded by the huge mountains of the Andes, I felt myself relax.

For the first time since arriving in altitude, we did lots of walking (close to 14,000 steps) and because of how the city is laid out, we had to walk up a lot of hills. However we took our time and didn’t have any problems.

Saying that, I got a headache and my ears were popping like crazy when we took the teleferico back up over 4,000m but we didn’t hang about long at the top. That sudden headache reminded me how much difference 500m can make.

Day five

We flew to Cuzco, Peru, which is at the slightly lower altitude of 3,300m. I expected to find it easier to breathe right away after being back at 4,100m in La Paz airport. My breathing felt smoother inside the airport although the pollution of the city was quite bad. After a rubbish night sleep in La Paz due to a dusty, creaky room and probably eating too much too late, I felt a bit ropey and after eating my first meal in Cuzco felt thoroughly poisoned.

That meant being unable to do anything after 6.30pm so the first night in Peru was wasted and I was up with an upset stomach through the night.

Day six

After another rubbish sleep, I was awake early and did what I probably shouldn’t have – caffeinated the problem away. This gave me a false sense of energy and the tiredness at altitude felt like a distant memory.

We spent the morning and early afternoon organising activities for the rest of our time and then visiting some of the city’s attractions. Unlike anywhere else we’ve been in South America, except Ipanema Beach in Rio, the people of Cuzco relentlessly try to sell tourists stuff. Once we politely said no to our 14th massage, 20th restaurant, 37th hat and 42nd selfie stick, we were drained and found a quiet bar for respite. The peace of the bar was so nice that we couldn’t resist a second drink and then having tapas for dinner would have been a crime without a glass of wine.

So basically Cuzco was where my caffeine and alcohol consumption went back to normal. You’re really encouraged not to drink at altitude – because it’s a depressant and because you’re already dehydrated. So after initially passing out, I woke up with a racing heart in the middle of the night.

Day seven

When the alarm went off at 6am for our first trip out of Cuzco I had slept on and off but didn’t feel rested. Thanks alcohol!

As a result, by the time we got to our first stop – a lake in the town of Chincerro at 3,700m I was out of breath and felt very weak. The stairs to the first Incan settlement in the same town were a real struggle. Each one feeling like a mountain – similar to how I feel on really bad fatigue days.

As we moved down into the Sacred Valley, things got easier – although climbing the stairs at Ollantaytambo was still a challenge that required a pause halfway. By the end of a full day in Pisaq, a settlement around 3,500m, I felt thoroughly exhausted and was not looking forward to the 4am alarm clock for Machu Picchu the next morning.

In reality, the wake up was tough but our eighth day was much easier as Machu Picchu is around 2,500m above sea level. As a result, I was able to bound around the mysterious ruins, while other people were walking around grey-faced, looking as if they could be sick at any time.

This feeling of having all the energy in the world is common when you come down from altitude and so I’m looking forward to how amazing I will feel when we reach Lima, the final stop of our trip.

In summary

We have now managed to spend 10 days at altitude without any real problems and without having to take any special medications.

I have managed a tough yoga class, a lot of walking and have climbed thousands of Incan-built stairs.

I think the following made my first extended period at altitude easier:

  • taking the time to acclimatise properly by having two full days of relaxation
  • not drinking alcohol or caffeine for the first three days
  • eating light meals
  • allowing ourselves to go to bed early and not overdoing it

Now that I have seen how my body reacts to altitude, I would be less nervous about going above 3,000m again. Saying that, I won’t take it for granted and will definitely take the same precautions and have a back-up plan in case I react differently next time as altitude, like myasthenia gravis, is unpredictable.

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.

Extended honeymoon

It has been a while since I’ve posted here and in truth that’s because I’ve been busy. I’ve been working away from home Monday to Friday and in my free moments I’ve been preparing for my wedding (most definitely the best day of my life) which happened in August.

More recently I’ve been preparing for my upcoming extended honeymoon.

That’s right – Elaine and I have decided to do something extra ordinary for our post- wedding break and so we’ve given ourselves up to 8 months off work to travel.

After many years of one of us working away from home, we’ve decided to start our marriage with some lengthy quality time together and to go to parts of the world we’ve dreamed of seeing:

  • Nepal
  • South east Asia
  • South America

Far flung foreign climes with completely different eco systems and germs  – that’s pretty terrifying for a person with MG. Particularly someone who was immunosuppressed for years. 

But now feels like a good time because: 

  • I’ve been in good health over the last number of months and years
  • I’ve trained hard to get strong enough for the adventure
  • I’m on very low medication meaning that I am able to survive without trips back for meds
  • If not now, then when?

I plan to write this blog regularly when I’m away to show the highs and the lows of life on the road with MG. I’ve not met anyone with MG who has travelled for long periods and so I want to share my experiences about it (if you have, please share yours with me). But I’ll also be sharing general experiences of being on the road.

I’ll get into all the different aspects of preparation and the actual going over the next few blogs, but for now I have a 2 page to do list that will not sort itself! Pictured in preparation mode – testing my equipment in the Pentlands.

Extreme cold

This weekend I climbed Ben Nevis with one of my good friends. For most of the way, the sun was out and the air was warm enough for it not to be called ‘freezing’ (a rare day in Scotland). However about 2kms from the top, there was snow on the ground and due to exposure and wind chill the temperature dropped straight away. By the time we were on top, the wind chill was up to -11 degrees.

What does this have to do with Myasthenia Gravis? Well, when the temperature dropped my speech went funny. As in I couldn’t speak properly at all – my tongue and my lips felt too thick and the sounds I was making were slurred. My mouth seemed full of saliva. It was frustrating as I tried to communicate with my friend about our last stage of the journey.

Yet when we came back down, the symptoms disappeared as quickly as they had come on.

It wasn’t the first time this has happened. When my body temperature has dropped on other winter walks, it’s been the same thing. But this was the worst experience (possibly because it was the coldest) and helped me to recognise the pattern.

All the time I’ve been worried about my MG responding to heat – in the bath, in saunas, in hot countries – and I’ve never had any problems. But it seems that I’m not so lucky in extreme cold. 

I didn’t have any other weakness, but then again I didn’t hang around to find out what would happen to my body over a longer period.

Does anyone else have similar symptoms in extreme cold?

3 years of myasthenia gravis

This month marks my 3 year anniversary of myasthenia gravis diagnosis. I realised this today with a bit of a shock and found myself asking how 3 years could feel so long and short at the same time?!

Where I was 3 years ago

September 2013 – I had had an incident in March where my right eye had gone squint over night. After lots of tests at Moorfield Eye Hospital, I was given the all clear and 2 weeks later the eye was back to normal. I let out a sigh of relief and put it out if my mind for fear that thinking about it might make my eye go squint again. But in September the double vision brought on by the squint eye crept back and as I sat at work not knowing which screen was the real one, I knew I had to get back to the hospital. Panic struck – once could be bad luck but twice was a pattern. 

I was told that I had suspected myasthenia gravis and a diagnosis had been sent to my old address in April. 6 months of knowing about the condition without treatment felt unfair and as the symptoms progressed over the coming months I got angry about it.

 As I’m sure many of you can relate to, hearing you have myasthenia gravis for the first time is upsetting and terrifying. What is it? What does it mean for me? Googling it didn’t make me feel any better – in fact I started to panic that life as I knew it was about to rapidly change. And it did.

Before I received my first appointment with my consultant and therefore received treatment, my vision was almost permanently double, I started to have difficulties with speech, I struggled swallowing and couldn’t really eat around people due to awkwardness of it all.

For a long time after September 2013,  I was in a difficult place both mentally and physically.

Between Sept 2013 and Sept 2016

I’ve had:

1 thymectomy- an operation to remove the thymus gland

2 specialist consultants 

3 jobs

4 different kinds of medication

The pleasure of attending 5 Myaware meetups

and…

I’ve written more than 365 blogs about living with the condition. 

September 2016

3 years on and I often forget I have MG. After seeing my new Edinburgh-based consultant, I’ve cut out 1 drug and, as I’m doing well, I should be gradually reducing another shortly.  I’m in drug induced remission according to the doctor and we’re testing whether that will hold as I take the drugs away…a bit like a game of Jenga.

Since my move back to Scotland, my quality of life is superb which in turn has helped my symptoms stabilise and reduce. My work-life balance is…balanced and the stress I feel in Edinburgh, compared to London, is minimal. I now get the occasional ptosis (eyelid droop) and I get exhausted still if I over exert/indulge myself, but that’s about it. Both of those things aren’t too hard to live with when I look back to the alternative experience 3 years ago.

On the over indulgence point, I’m currently taking a month off from alcohol mainly to rest my liver after a rather boozy summer. But I’m also keeping a close eye on how my energy levels are without alcohol in my life as I’m not averse to cutting it out for good.

I’ve felt strong enough recently to try a host of outdoors sports: kayaking, paddle boarding and Munro (Scottish mountains over 3,000ft) climbing (as pictured with my friend Steph). Each of these adventures were challenging but I managed without any MG-related difficulties. This is on top of 3 fitness sessions a week.

And most importantly, I’m writing almost every day. Whether anything will ever come of it or not, I’m really enjoying the discipline and the creative outlet that it gives me. Having the mental space and quiet to do that is something I couldn’t of dreamed of 3 years ago.

3 years is a long and short time 

While much has changed over the last 3 years I know that in another 3 years time, everything will likely be different again. I might have had a crisis (where your muscles stop working properly) but I might also have trekked to Everest base camp, I might have had to give up working full time or I might be running a team. That’s the problem with MG – it fluctuates so all I can do is try to keep myself strong, follow the doctors orders and, most importantly, listen to my body.

Myasthenia and post-thymectomy blues

A conversation I had over the last few days about the feelings you have after an operation got me thinking about my thymectomy. While there are a range of emotions you go through, my thoughts were focused on the disappointment you feel if it isn’t an instant success. I thought I’d blog about that nearly two years after my operation.

You go into hospital with high hopes when having a thymectomy –  you read that’s there a 30% chance it’ll make your MG vanish. You try to remember that’s still 70% of people who continue to live with it, but your mind says ‘be positive’. You think your consultant and surgeon have pushed this on you for a reason, right? I mean, it was practically from your first MG appointment that you were encouraged to have a thymectomy. 

Then, as happens for the majority, you have the operation and your symptoms are still there. In fact they may flare up because of the stress your body’s under post- operation. It’s spoken about or assumed by the medical team that you’re not one of the 30%. The good teams will tell you that it takes time for many people to feel the full impact of the thymectomy. Your loved ones will either be too polite to say anything or they’ll be straight up with you – they’ll remind you that hope isn’t gone. But once you’re strong enough to want more than basic comfort, you’ll begin to feel the loss of something you only ever had a slim chance of getting. An easy cure. That’s when you might hit a wall.

That wall will look different depending on the way your mind works and how you react to the thymectomy – for me, it looked like a mountain blocking my path. That I couldn’t hope to climb. Instead I sat down and looked up at the mountain – studied its sharp crags, the rain lashing down around it, the mist lingering at its peak, the broken path leading up at an angle I could hardly fathom. I sat still in the silence of the mountain’s valley and asked myself ‘why did I bother trying’. How deluded was I to think I’d be one of the ‘special ones’. 

As I sat stewing in that anger and frustration, I missed the initial changes.

I barely recognised the stable state I found myself in. Months past and all I had was ptosis and a bit of fatigue. No sign of double vision, slurred speech, difficulties swallowing or weak limbs. I woke from my silent trance to see that the mountain had transformed into a jagged cliff edge with gentle clouds over head and a calm sea lapping away. It was much more manageable now – everything was. While I went for little strolls, I didn’t stray too far. I was scared to try the path just yet for fear that it would shape shift before my eyes back into the terrifying rock face. Or that a surprise landslide would throw me into the sea and my legs would seize up. I didn’t believe the change was real or would last.

The symptoms stayed consistent and I found I was able to challenge myself more with work, with the blog and fitness. I began to feel stronger than I had for years – the only thing that remained of my MG was the fatigue when I overdid it and the ptosis. By the time it came to the year anniversary, I looked to the spot where the mountain had turned into a cliff and saw a rolling hill. The sun was peaking through the clouds now and illuminating a meandering path. This made me smile from my heart outwards and for the first time I considered that the mountain might not come back at all if I was careful. I went for further strolls now – roaming, seeking, testing myself. 

It’ll be two years in September since I had my thymectomy and when I find myself in that valley now, I see only that. A peaceful valley with mountains and cliffs and hills in the backdrop. I walk around safe in knowledge that I won’t fall or find myself scrambling on my hands and knees (unless I choose to).

 When I think about the first few months after the operation, I realise that the dark feelings I had are still there deep down. Like I’ve stored them away so I always remember. But I can look at them from a safe distance and know that accepting them and waiting for them to pass was the best thing I could have done. They probably won’t ever leave me because they were part of the journey of acceptance and because I think of them every time I see my ever fading scar. 

The majority of us won’t have that thymectomy miracle and while it’s good to be hopeful, it’s not the end of the story if it doesn’t happen. Even if it might feel that way at the time. 

Be patient, listen to your body and your mind, embrace what you’re feeling rather than trying to shut it out and pay close attention to the little changes. You might find yourself in that valley with me someday.

335/365 – Mountain challenge 2016

One of the many things I want to do in 2016 is climb the UK and Ireland’s four tallest peaks: Scafell Pike, Snowdon, Carrauntoohil and Ben Nevis. It’s been a lifelong dream of mine to climb Ben Nevis but as I drove past the mass of sharp grey rock earlier this year, it became clear that I’d need to be mountain fit to take on the challenge. As there aren’t many mountains to build up stamina near London, the idea came to try to see a bit of the country while climbing. 

I can now share that we have a date for our first climb. As part of Elaine’s Christmas, I’ve booked two nights in the shadow of Carrauntoohil and got to see her face light up about it last night. Before that, we will try to climb Scafell Pike and Snowdon so that we do them in height order. 

Am I worried about being strong and symptom-less enough to do this? Yeah, of course, but I have months to get fit enough. The thought of looking out from Ireland’s tallest peak, hopefully, is more than enough motivation. 

306/365 – Struggling for fitness motivation 

Over the last few weeks, the weather has been getting me down. It has manifested in lots of ways; a preference for indoor over outdoor activities, not being able to get enough sleep and, most importantly, a complete lack of motivation to exercise. This lack of desire happens to me most years around this time – I think due to my body going into hibernation mode. But there have been two differences this year that are concerning me a little.

1. I’ve not been able to talk myself into it

I never enjoy exercising as much in the winter as in the summer. Like every normal person on the planet, I prefer to keep fit with the sun on my skin. In winter, I tell myself I need to stay fit to ensure I can enjoy that feeling again in a few months time and I put the work in to maintain a certain level of stamina. I also now have the added driver of keeping my muscles as strong as possible. I am normally able to motivate myself enough to silence the excuses.

Worryingly, this time around I’ve been listening to the protests. Not just once or twice – every week for the last 2 months, I’ve been doing much less than I normally would.

What I’m doing about it: This week I’ve been firm with myself and have done two sessions since returning from Dublin. Making it to the gym for each one was a battle of willpower, but I did it and I feel better for it. To help get me there, I’ve mixed up my tired routines and thrown in some fitness challenges.
2. I’ve got less energy than I’ve ever had before

As a result of not exercising as much, on top of eating badly and I think what the high dose of aziathioprine does to my body, I’ve had low energy levels. This is a vicious circle and one I am determined to break.

Because I’ve been struggling to motivate myself, I can already feel my stamina levels dropping. Yesterday on the treadmill, I was exhausted doing something I would previously have been able to do confortably and I’m struggling to find the strength to cycle at the level and speed I used to manage comfortably. I don’t want them to drop any further.

What I’m doing about it: Plan three to four sessions a week up until Christmas and start eating healthier food to help with energy levels.

273/365 – Climbing mountains and myasthenia gravis

The other day while considering 2015 so far, I had a realisation about what I want to do differently in 2016. The main thing I want to do more next year is climb mountains. 

I’m not planning to scale Everest or anything – like most people who saw the film with the same title recently I’d rather stick needles in my eyes. But the film has stuck with me more than others I’ve seen this year and my experience of scaling Goatfell, as pictured below, is one of my fondest memories of 2015.  

 
It’s not just the satisfaction of looking out across vast open spaces – it’s also the mental battle, it’s the silence and the way rhythmic steps encourage me to turn onwards, it’s the respect you show nature, it’s the lightness of clean air circulating around your body, it’s the moments of pause where you look out at the world and realise how insignificant you are. Oddly, there is nothing that makes me feel as alive. 

Other than fitness and my gammy knee, the main concern I have is altitude. I’m planning to climb quite a few mountains next year – more on the draft plan on a blog to come – but they will most likely be under the 1,500 metre cut off when altitude affects the human body. Still, the endurance on top of being over a thousand meters above sea is an unknown post MG. 

Say I do decide to clinb something higher – I’m intrigued about how altitude would affect my myasthenia. I plan to do some testing of that before embarking on any 4,000ft plus mountains in a false altitude environment and also asking my consultant for any first hand accounts. 

On top of that there is the fear about being in a remote place and not being strong enough to continue. I’ll need to practise my smoke signals and will definitely be climbing fully prepared.