Talking about myasthenia on the radio

This week I’ve had two firsts happen to me – both of which were pretty exciting.

1. on Tuesday evening I spoke to E Care Radio in America about living with myasthenia gravis
2. on Wednesday, something I wrote was shortlisted for a short story competition

While the radio interview is the most relevant for this blog, the short story news is also related. I say that because it was writing this blog every day for a year that gave me the discipline to keep writing. Over the last two years I’ve been focusing more on creative writing and I’ve felt myself getting better (very slowly). Being shortlisted is a huge deal for me as it’s given me the confidence to keep bashing those words out.

Sadly the story isn’t about myasthenia… but you never know about the future.

Radio interview

I was approached about doing a radio show around a month ago by American digital station E Care Radio. As June is Myasthenia Awareness month, they wanted someone to speak about what it’s like to live with the condition and I didn’t feel like I could refuse as I’ve always said I’ll take any opportunity to raise awareness about MG. But once I agreed, I didn’t really think about it again until Tuesday morning…when I started to panic and doubt myself.

Who was I to speak about it? What did I know after a mere five years? Worse…would I be able to talk about the small amount that I do know when the nerves kicked in?

It was the fear of going totally blank that made me write down as much as I could think to say…none of which I looked at during the interview. Still, I think it helped calm me down and focus on what I did have to say. Which was quite a lot as it turns out…the interviewer could hardly get a word in.

I spoke about:

• my tips for coping with MG
• the best things that my loved ones have done to support
• balancing work with MG

You can have a listen to the interview on the E Care Radio website.

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.

Myasthenia and using travel insurance

As I mentioned in my last blog, I had a relapse of double vision when in Uruguay in February. Before jumping to the treatment I received in Argentina, I want to talk about the experience I had with the travel insurance provider.

Ever since being diagnosed with myasthenia gravis, I have been particularly careful when choosing a travel insurance policy. I felt it was inevitable that one day I would need to use it and that time finally came in Buenos Aires last week.

Before calling the insurance company, I used the online doctor service that was included. It was literally a video chat with a British doctor who confirmed I should go to a medical facility to see a neurology specialist ASAP. So I phoned my travel insurance with her recommendation to check if there were any facilities that they would recommend, stressing that it was important for me that they could cater for English-speaking patients.

I hoped that it would be a quick call to the travel insurance just to get a recommendation, but I spent the next three hours having an on and off conversation with one of their staff.

After a long initial conversation about my condition and what the doctor had recommended, the assistant went away and then emailed me over an hour later with a list of rheumatologists in the city although I had told him that the doctor had recommended a neurologist. In the email, he also said I needed to phone each of them to see if they had English-speaking doctors.

When I phoned him back to tell him no I needed an English speaking neurologist, he told me I should consider seeing a rheumatologist instead…as if he had had a brainwave about treating the whole condition. Only after I was quite firm with him, did he eventually agree to look at neurologists. He then again emailed a google search of neurologists without any information about whether they spoke English but also said I should think about his rheumatologist point. Never in my years of having the condition, have I ever had a rheumatologist recommended and, from a quick check on the MG Facebook support groups, it’s incredibly rare that someone would see this type of specialist if they only have MG.

All the time we were having this back and forth ‘discussion’, I was in my darkened hotel room feeling my energy levels – which were at this point already very low – dropping. But there was no sense of any concern whatsoever from the insurance company assistant.

When we were on the way to the hospital I had found with English speaking doctors and staff, he called again to say that unless I had declared the condition I wouldn’t get any treatment paid for. Hardly the right time to bring this detail up! Of course I had declared it and paid the excess, which earlier I assumed he had seen on my file rather than adding stress to an already unpleasant situation after three hours of terrible service.

All in all, it was an utterly frustrating experience that seemed to lack in any kind of empathy. I know most people will not be shocked by this, but I do wonder why we allow an industry that is meant to be providing us a specific service to be so inept when we are at our most vulnerable? There is definitely a business opportunity for a kinder travel insurance company, or even a customer service team who ask callers once how they are doing.

I have now submitted my claim, so I look forward to seeing how that goes but I’ll be doing a bit more research about other providers the next time I take a trip.

A bad week in Uruguay

After five days in breathtaking Rio De Janiero and a couple of days on both the Brazilian and Argentinian sides of the Igazu Falls, we had a night in Buenos Aires before heading to Uruguay for carnival.

To get to Montevideo, Uruguay’s capital, we had to take an overnight bus from Puerta Igazu to Buenos Aires and then an early morning boat to Montevideo the next day. It was exhausting and I think the combination of the extreme heat, the lack of sleep and the different climates led to what happened next.

On day 1 in Montevideo, I had the start of double vision and felt pretty unwell. This developed rapidly over the next few days to the worst double vision I’ve had in years, a nasty headache from the swirling and really bad fatigue. Elaine said I was getting less and less like myself each day and the hours where I was fit to do anything kept getting shorter.

Still, we tried to enjoy the cool carnival nights in Montevideo.

This photo above is on our first night in Montevideo. It was the night of the main parade and here we’re climbing scaffolding to get a better view.

After five nights in Montevideo, we moved on to Colonia Del Sacramento, a former colonial town across the river Del Plata from Buenos Aires. Luckily, there is not much to do in Colonia, so I was able to relax there as I didn’t have much energy for anything else.

After a week of getting worse each day, although I had doubled my steroids, we caught the boat back to Buenos Aires a day earlier than planned to get some help.

I’ve now had medical care in a private facility in Argentina’s capital (more about that in another blog soon) and after upping my steroids and pyridostigmine I am feeling much better. However, this Uruguayan episode served to remind me that the MG is more of a sleeping beast than a distant memory and that I can’t take a day of being well for granted.

The photo for this blog is at the lowest point of my last episode where I wanted to hide away from the world. Thankfully in that moment, I had Elaine to keep my spirits up and pull me out of my self pity. So it has served to remind me how lucky I am to have her by my side too.

Despite this bad turn, the reason we are here – to experience other countries and cultures – is what kept me going. Here are a few of the amazing things we experienced in Montevideo and Colonia Del Sacramento. I hope the beauty of the country and its people is what I remember when I think back on our time there.

Travelling and myasthenia gravis

I’m back in Scotland after travelling around south east Asia with my wife Elaine and I have one thing to say to you: long term travelling is possible with a condition like MG. But more about that later. Over the three months, we spent time in seven countries:

• Nepal
• Thailand
• Vietnam
• Cambodia
• Singapore
• Indonesia
• Laos

Although many of the countries were neighbours, they were very different culturally and politically which meant there were big differences in how developed they were and, as a result, what the medical facilities were like. The last point would not be a consideration for many of the travellers we met along the way, but Elaine and I were constantly aware of how likely we would be to survive a hospital trip if it was required.

During my time in Thailand, our second country, I made a decision – that blogging about the trip was getting in the way of my ability to be in the moment. Often we only had a few days to truly immerse ourselves and I didn’t want to spend that time doing the reflecting that I felt might be more meaningful from a distance. So I stopped, hoping that I’d have a few things to say once back in Scotland.

Now that I’ve had time to process it all, I’ll cover different topics that came up during the journey over the next few blogs. I’ll be posting these between now and when Elaine and I head over to South America at the end of January for our final three month stint.

For now though I want to say loud and clear; travelling for an extended period is do-able for someone with myasthenia gravis (MG). I repeat, it is do-able because I definitely have MG and I’ve returned from three months away happy and healthy. Saying this, I had the go ahead from my consultant after coming off the drugs that suppressed my immune system and getting all the relevant injections. I would NOT suggest trying it unless you can get the same thumbs up from a medical expert.

Naturally, I was nervous about how I would cope and while I was planning I couldn’t find anyone with MG saying you can do this. But as travelling for an extended period to far flung continents has been a dream of mine since long before I was diagnosed with MG, I had to try. And I knew it was important to try while I was feeling healthy and strong as with this condition nothing is guaranteed.

Fine, I had to adapt my dream: from a solid year of backpacking down to two three month periods because I am still taking medication (prednisolone) and that’s the longest prescription I could get. I also won’t be able to go to any areas with yellow fever in South America (the Amazon for instance) because I can’t get the yellow fever jab as it’s a live vaccine.

Although it’s cost us more money to go and come back home and then go again, it’s given me time to catch up with loved ones, get blood tests done to make sure I’m really doing ok, to sleep in the same bed for more than three nights in a row and to recover my strength before the next leg.

I already know it’s the best thing I’ve ever done and may ever do. Don’t get me wrong: there were hard days and times when I wished I was back in the safety of my pest-free and tropical disease-free flat by the seaside. But then there were days when I felt more alive than ever before; like when we snorkelled with wild turtles in Indonesia and spent the day looking after rescued elephants in northern Thailand. These two things alone were worth every possible risk and will stay with me for as long as I live.

A photo taken on our rented Go Pro off the coast of Gili Meno, Indonesia.

So if there’s one big takeaway for me, challenge your I cants and be willing to adapt your plans to make them fit with your MG or whatever it is that you’re struggling through. There may be a way of making your dream come true if you’re flexible and brave.

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.

Down to zero

After 4 years of MG symptoms and 3 and a half years of the diagnosis, I’ve been given the go-ahead by my consultant to reduce my medication to zero. Nothing, nada, zilch.

Earlier this week, I gave my consultant an update on how I’d got on with going from 100mg to 25mg aziathioprine. The short version is that I don’t feel any different now – there was a time when I wasn’t sure between 75mg and 50mg as my symptoms were worse than they’ve been in a while. But I waited it out realising that a month between stepping down doses wasn’t long enough so I’ve been waiting 2-3 months between reducing my dose.

Now comes the real test – my next step is down to zero then down to 1mg of steroids every second day then nothing. So totally drug free. 2017 will be the year I tested going drug free.

This is what I’ve been wanting for years, what I’ve been working towards, but this week I’ve felt a little numb to it. I’ve not been sure how to feel about it so I’ve put off thinking about it knowing that I’m away this weekend. In the middle of nowhere, with lots of time to think. But now I’m here and I’m still struggling to feel it. 

Thinking about it, it’s probably because now comes the scariest part. The ultimate test of whether the thymectomy and healthy lifestyle (early nights, good diet and lots of exercise but not too much) will allow me to stay in remission. Proper remission. 

I’ve been told it’s fine to take 1mg if I’m feeling weak, which is a good back up. But when I finish my latest prescription in a few days time, it will be time to step into the unknown. Wish me luck!  

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)

Myasthenia and eye tests

In the three years that I’ve had myasthenia I’ve been sure that my eyesight has been getting worse. When looking into the (not too far) distance I often mistake bags for children, dogs for bags and children for dogs. Yet in that time I’ve never gone for an eye test…why you ask, well I’ve been waiting for my eyes to be ‘back to normal’.

I didn’t see the point of getting them tested until they were as good as they could and would be again. Since the early days of my MG my left eye has been at a different kilter from the right so when I look up I get double vision. I hoped by taking the medication that over time this would correct itself. But it hasn’t and after 3 years I finally bit the bullet and went to get an eye test. 

The test itself was pretty tough – my vision doubled, blurred and I could feel ptosis come on as my eyes during what felt like hours of tests. I left with a lighter wallet and a very droopy right eye. 

The result of tests shocked me a little – anything more than 60cms away from me will start to blur. The optician asked how I had been functioning? In blurs and fuzzy patterns it seems now, any time I take my new glasses off.

What made me finally bite the bullet was the view from my living room. Although I knew it was beautiful, I longed to see the things Elaine described across the Forth in Fife – the distant mountains, the boats on the horizon and the sun setting – as more than just blurs. 

If my eyes do align again it might be that I’ll need a different pair of glasses although I asked that the optician did not put a prism in the glass so hopefully not. I did this because I had one I my previous pair of glasses when the first symptoms came on (which I lost before I was diagnosed). Rather than making things clearer, it made the world feel at a distance and always tilting which as you can imagine made me feel queasy. 

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.