Category Archives: Exercise

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.

Bangkok

Arriving in Bangkok is organised, air-conditioned bliss after the anarchy of Kathmandu…even if you’ve grown fonder to the craziness as I had. Everything in Bangkok is signposted, efficient (take a ticket number for an airport taxi and go to the booth with the same number, voila!) and there are plenty of people around to ask for help. Still, after an intrepid first fortnight of travels, I felt a slight sinking feeling as we stepped back into an intensely structured universe.

Thankfully, that sanitised order ended at the airport door – the area around our hotel in China Town was more like a bustling street bazaar full of exotic food for sale like Durian, sticky mango rice and Jack Fruit. Delicious!

With its rich-poor divide, its drive for convenience and modern comforts (particularly good coffee) and its seedier side nestled down dark alleys, Bangkok is like many cities I’ve visited before. But it has its own vibe too. It has alligator-like lizards swimming in its canals, Tuk Tuks dressed up with flashing lights zipping down busy alleys, anything you can imagine available to buy on its streets and an architecture style that is completely new for me. 


The lizards of the canal – Water Monitor lizards.

Day 1 sees us decide to walk the 30 minute journey from our hotel to the Grand Palace as a novelty after it being near impossible to walk in Kathmandu due to pollution. The humidity gets in on me and it’s clear why most people ride mopeds rather than walk here. I worry that this heat may bring about some issues with my MG as I feel exhausted almost right away. But I learn on that first day that an air con break with a delicious fruit smoothie and a salty sandwich is what will revitalise me here, not my normal caffeine fix. 

Over the next 4 days we try to take in as much of the city as we can including temples, art exhibitions, a boat trip, shopping, night life and a ladyboy cabaret. We also dedicate a day to our hotel’s rooftop pool and bar; watching the boats on the Chao Praya river and trying to conquer the inflatable flamingo. Thus in Bangkok we try to cement the balance of ‘doing’ and ‘being’ that we want to keep throughout the trip. This trip is about rest and recovery as much as it’s about adventure.

I’m not sure what I expected, but Bangkok is definitely better. From a privileged tourist perspective, the value for money is unreal compared to home, it’s easy to get around and no matter where you are at what time of day or night, there’s a Tuk Tuk or taxi driver waiting to haggle with you – and 9/10 times for me they were polite. While there are quite a lot of Seven 11s, Starbucks and McDonalds, there are a lot less chains here which allows different areas to have their own feel.

I have no doubt that Bangkok has its own issues (many of which lurk down those dark alleys), but as someone passing through its relaxed atmosphere, variety of attractions and affordability mean I’m certain I’ll be back here.

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.

Treating a set back like an experiment

So it’s happened again – just when I started to feel completely unphased by my myasthenia gravis I’ve had a set back. This is the way with a condition that fluctuates but it doesn’t make it any less annoying. 

Two days before I was due to go on a relaxing break to Spain my right eye starting playing up. I had a good night’s sleep and it seemed improved but then, the day before I was due to go, I had a later night than expected and woke on my first day off with a bad case of ptosis – dropping – on my right eye. 

My ptosis is usually mild now – a slight droop which is annoying – so I’d forgotten what a bad case feels like. I count a bad case as when my eye lid is almost or completely closed. No matter what I do it can take days or weeks to right itself and in the mean time it makes everything a bit more of a challenge. It means:

  • looking anywhere other than down becomes problematic – looking straight ahead there is double vision as the right eye tries to adjust with a more limited field. This means I spend most of the time with my head tilted up and have more problems getting around
  • having conversations becomes challenging – you can’t really look people in the eye because when you try their eyes move around their face. Oh, and you over-analyse every look of your conversation
  • the eye lid feels really heavy and is constantly uncomfortable – I used to wear cotton patches during these times for comfort. It’s not great when working in front of a computer screen all day

I’m fairly sure that I’ve run myself down in the build up to the holiday – taking on too much and not giving my body the rest it needs. Then there was the sharp change of climate and routine which probably didn’t help either. 

Rather than waiting in a depressed stupor for things to return to ‘normal’, I’m taking a scientific approach. I’m testing out the impact of different things and will hopefully have more knowledge about how to treat myself next time. So far I’ve tried:

  • Sleeping longer than normal – on holiday I had between 9-10 hours sleep a night. This is more than the  7-8 hours I get normally. This seemed to make it worse rather than better.
  • Cutting out alcohol – after a break from booze, I had slowly reintroduced it to my routine and was having at least 2 drinks a day on holiday. Over the next week I’ll be removing alcohol again to see if it has an impact
  • Upping my steroids – I’ve upped my steroid intake from 2mg to 3mg and hoping that extra tablet will help. If I don’t see an improvement over the next few days, I’ll increase it again
  • Eating healthier – while I didn’t eat a lot on holiday, what I did eat wasn’t particularly healthy. I’m on a detox this week to aid healing including keeping it simple with just lean meat and green veg and lots of lemon water
  • Cut down on caffeine – before I went on holiday, I was drinking more coffee than I ever have. While away, I cut down to 1 cup a day and I’m going to try to keep a reduced intake now that I’m back
  • Rest – on holiday I did very little that could be described as ‘active’ for the first two days. I then slowly reintroduced exercise – gentle walks and relaxed paddle boarding. Now that I’m back I’m going to do less exercise than normal this week 
  • Heat – unlike many others with MG, I find heat from a sauna, bath or weather works well for my body. Now that I’m back in an Autumnal Scotland, I plan to use the sauna every few days (as I had just before the photo above)

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.

362/365 – First adventure of 2016

January has been sensible. A month of quiet, healthy weekends – lots of cinema, running and eating home-cooked, mostly nutritious, food. After finishing my last blog (on the lows of blogging for a year) Elaine and I decided to do something a bit different this weekend. 

We packed a bag and headed out towards the New Forest. By the time we arrived at our gorgeous hotel in a village outside Southampton, there was very little daylight left. We made the most of the facilities and headed to the gym and swimming pool to unwind after the busy drive. Lounging in the sauna, we promised that we would do this kind of getaway more often. 
Today, after another swim, spa and brunch, we set out for my first proper walk of 2016. 

After a failed walk in the New Forest during our first break together, the rain was not going to put us off today. Wrapped up and excited, we set off through a campsite overrun with wild horses and onto a muddy sand track. The first section of woodland seemed abandoned except from horses lurking rather magically in the trees. When we came to the first Heather plain, it was obvious why as the path turned into a series of islands to jump between in the bog. As we forgot the canoe, there was a lot of sinking into muddy puddles. 

Once we’d navigated the first stretch of the route, which was like the bogs of Mordor with dead people lurking in the puddles, we were able to properly stretch the legs. Then the dog walkers appeared out of nowhere and our route passed over undulating hills, gnarled trees and lots more Heather. We became rather nimble at island hopping and experts at spotting a solid piece of ground…or so I thought until I ended up calf deep in a puddle. 

We took a few wrong turns and ended up jumping across burns to get back to the car, but I heard a quote recently that I love:

An adventure doesn’t start until something goes wrong.

After a couple of falls and slips, we were muddy, wet and rosy cheeked from the slog of the route. But I’ll be taking the peace of wide open spaces and nature’s soundtrack back to London with me.

356/365 – Precious patient 

Curled up on the hospital bed with the ECG pads still all over my stomach and chest, I woke up with a fright when the doctor finally came to speak to me. It was 7am on Saturday morning by now and I could tell by looking at him that he was jealous of my light sleep. But  that didn’t stop him from giving me a full check up: testing my reflexes, my pulse, blood pressure and other tests I don’t understand. He stopped short at blood tests – much to Elaine’s relief – but told me I’d done the right thing coming into hospital as I am a precious patient, due to the MG, and the symptoms I had were to be treated with caution.

I had been stupid on Friday and that’s how I ended up in hospital in the middle of the night. Straight after two days in a row of 1 and a half hour hot yoga classes, I mindlessly had a few glasses of bubbly. Not thinking about the strain my body had already been under, I pushed it too far with adding alcohol on top and woke up with palpitations at 3.30am. When they didn’t shift after about half an hour, I thought it would be best to call NHS 111 and they told me to get down to our nearest hospital’s A&E. Poor Elaine, who had been keeping me calm throughout, drove on the icy, dark roads and stayed with me. 

I know – I am an idiot and will not be doing it again. I’m annoyed at myself as I was feeling great for doing the yoga – as you can see in the picture above its helped me feel well and strong although 2 days in a row was my first mistake. 

But it was great to have a general emergency doctor recognise that the breathlessness I was having could have been related to the MG and a crisis. Once again I’m reminded that everything I do now must be more considerate of my health, but also that if/when something does happen, I need to tackle it head on and trust that I’ll be in safe hands. 

353/365 – Researching the timeline of Myasthenia

While researching a timeline of myasthenia Gravis that I’m putting together, I came across an interesting quote about it from the start of the 20th century.

Until the 1930s, the treatment for MG was described as a ‘source of disencouragement to the patient and a cause of nightmare to the physician’.

Disencouragement wasn’t all it said – one of the forms of treatment was also avoiding excitement. Although at that time, myasthenia wasn’t necessarily a death sentence, avoiding excitement sounds like one to me. People confined to dark rooms for years on end – worried about laughing too much or even forgetting what laughter feels like. It made me incredibly grateful to be alive in this day and age. 

I know the reality for some people now can be like this in fluctuations – it can feel like all the things that bring enjoyment make the MG worse. But, with modern medication and research always trying to improve that, most people I’ve met with MG are able to build a life where enjoyment is not ruled out. So we are lucky.