Coping with myasthenia gravis blog on eCare Diary

Following on from the radio interview I did with eCare Diary Radio, they asked for a follow up blog.

You can read the blog on the eCare Diary website: https://www.ecarediary.com/Blog2874/Coping-with-Myasthenia-Gravis.aspx

In it, I continue the theme of coping with myasthenia gravis and broke my recommendations down into three key themes:

1. Stop blaming yourself
2. Let someone in
3. Connect with others who know what you’re going through

As I get quite a few people emailing about this blog helping them to cope with the condition, I thought the blog might provide some further detail on these three important topics.

Because the show and blog are aimed at loved ones as well as people with conditions, it might have some helpful tips for those close to you.

Please let me know if there are any other aspects of coping with myasthenia that you’d like me to write about.

You can read the blog on the eCare Diary website: https://www.ecarediary.com/Blog2874/Coping-with-Myasthenia-Gravis.aspx

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.

Here I go again: steroid step down

I’ve been back from travelling for around a month now and in that time I have:

• visited Ireland to see the in-laws and explore a part of the country I had never seen before, Galway
• found and moved into a new flat
• set up new flat to make it home
• started a new job
• started a new diet (more on this in a follow up post)

However the most important thing I have done since being back was visit my doctor to get a new prescription and get bloods taken. The results seem to be normal from the information I can get over the phone.

I also let her know that I planned to step down my daily dose of steroids over the coming months and being conscientious, she booked me in for monthly blood tests. This is the first time I’ve had these ordered by a doctor since London and, although it takes time out of the working week, it will be good to track my body’s reaction to the increased steroids over the past three months and how it responds as I step down. Data is everything these days, after all.

Already started

This month, I have got myself down from 10mgs a day to 7mgs and I plan to be down to 5mgs by the start of June. From there, experience tells me it will be a more gradual process. I know the toll this will take on me emotionally from previous experience – you can read about my last step down from the steroids in this blog’s medication archive.

However, to be reliant on as few drugs as possible while not compromising on quality of life has always been my goal for coping with my MG. In this respect, I must treat this step down process as a new test for my body and watch carefully to see how it responds.

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.

Altitude and myasthenia gravis

Today I’m stepping into the unknown. Not only am I flying from Chile – the most developed of the countries I’ve visited in South America so far (in my opinion) – to Bolivia – a country I know very little about and that has been described to me as the least European of all the countries in the continent. Now that’s an exciting thing in itself and the kind of description that sells a place to me rather than puts me off. But also the airport in La Paz, Bolivia’s capital, is 4,000m above sea level. We have eight hours here until our flight to the slightly lower Uyuni (3,600m).

General impact of altitude

It is widely acknowledged that the impacts of altitude start when a person passes around 3,000m – although some people start to feel it around 2,500m. This is because the air is thinner – it contains less oxygen. The higher you go the less oxygen it contains.

There is no predicting how and when it will impact a person but some common side effects are:

• headaches
• nauseous and/or upset stomach
• vomiting
• shortness of breath
• trouble sleeping
• tiredness

From what I’ve read it can take about three days or longer to acclimatise to the thinner oxygen.

Implications for myasthenia gravis

When I asked my consultant before taking the trip he told me there was no specific implications but I was to take care just as anyone else would.

Obviously the difficulty sleeping could trigger MG symptoms as it has done in the past for me, so it will be interesting to see how my eyes behave over the next few days. As you can see from the featured photo, I’m arriving strong with no physical eye symptoms.

However, from what I’ve read and I must remind you that I’m as far from a medical expert as humans come, that it might be particularly problematic if you’ve had lung problems or if you have an additional lung problem on top of your MG.

Experimenting by giving it a go

After a last minute panic at the airport and then on the flight, we are here in La Paz doing everything, including writing this blog, incredibly slowly. The only way to know how we’ll respond to this altitude thing is to be in it so armed with the names of drugs we can take to alleviate symptoms, we’re giving it a go.

We’re going to take it very easy – relaxing for the first few days until we acclimatise and then see what we’re fit for. We’ve got a nice hotel so that we can just relax and enjoy being in the desert; another new experience for me.

If things don’t go well, our plan is to skip the Salar de Uyuni and fly to Lima, the sea level capital of Peru, where we can take a meandering bus to Cuzco. This means a more gradual acclimatisation to the slightly lower Peruvian city (3,300m), from where we plan to spend a week exploring Incan history including Machu Picchu.

I will give an update on how we’ve found it in due course, but for now we’re off to enjoy the relaxation booths with Netflix that an absolute hero created in the La Paz airport.

Going to hospital in Buenos Aires

After a frustrating discussion with travel insurance as I wrote about in the previous blog, I went to a Buenos Aires’ hospital to get help for my increased myasthenia symptoms.

As you can imagine, going to a hospital in a country where you only speak ‘un pocito’ of the language was frightening. I don’t think I’ve ever had such rapid deterioration and I had no idea of how to explain this or even if they would know of the condition.

Luckily, we found a private hospital where they had staff who could speak English. We went to the emergency waiting room thinking we should follow the same process as at home, but we were quickly redirected to the neurology clinic. The receptionists, although baffled by our ‘Spanglish’, were quickly able to establish that I needed a translator. Because it was so late in the day after all the messing around with the travel insurance, the translator had left however one of the staff members spoke enough English to help us.

Less than an hour after arriving, I was sitting in front of an empathetic neurologist who was telling me to relax and that I was in safe hands. My condition was explored and my symptoms documented – then the normal tests of muscle strength were carried out for the whole body (holding legs up, pressing up with arms, scrunching up facial muscles etc etc). The checks were more thorough than any I’ve had at home.

Having established that the flare up was only affecting my vision in terms of muscle strength, I was taken for blood and urine tests. The final tests were from a lung doctor to test if my breathing had been impacted. That was an interesting experience and not one I have had before – blowing as hard as you can into a piece of equipment like a breathalyser is bloody difficult. It gave me a lot of sympathy for anyone with asthma as apparently they have to do these tests regularly.

Finally I was asked to go back to speak to the neurologist. She was able to tell me within two hours of doing them that I didn’t have an infection and then we worked out a plan for my treatment.

The doctor prescribed me to increase my steroids to 10mg a day and two mestinons a day. If this had been in Scotland, I would have been disappointed to be jumping back up on the steroids. But when I was handed the prescription, I felt such a relief that I could have cried. I probably would have if I wasn’t so exhausted – by this point I could hardly keep my eyes open. And that night, for the first time in almost a week, I slept right through and woke up feeling a hundred times better.

I returned to the hospital for check ups after this and was given the same level of excellent care and support. Not only that but when I left, I was told if I needed anything to get back in touch and given the names of neurologists in the next place I was going.

While I know I was lucky to be near a capital city like Buenos Aires when this happened, I was very impressed by both the standard of care and the cost of the treatments. It may have been my travel nightmare up until the hospital, but as soon as I was in that neurologist’s consultation room I felt in safe hands.

The picture for this blog was taken outside Manzana de las Luces in Buenos Aires where I did a tango class a few days after the increased meds kicked in. Since those few days at the hospital, it’s been back to having fun and trying new things!

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 with medication

Travelling with enough medication in my bag for my three month trip was an anxious experience. Let me list some of the situations that caused me to be nervous:

• every border between countries
• every airport security check
• every long bus journey where there were lots of stops before mine and I had to put my bag in the hold
• every time I left a hotel in a hurry
• every time I was in a hostel or hotel where I didn’t think my stuff was safe
• every time I felt my bag was unsafe on the street

I think you get the idea. And it’s not like I was carrying an illegal haul – this was prescribed medication but carrying around 140 pills isn’t something I’ve ever done before. My mind kept jumping to them being confiscated or lost and I had no idea whether I would be able to get more and then I worried that our dream trip may have to be cut short. Along with my passport, the meds were literally the only thing that I couldn’t do without. Especially since my bank card wasn’t working…but that’s another story.

In the first week, I emailed my consultant to ask him for a confirmation of my steroid prescription. I had received a very helpful email from a reader and fellow myasthenic who said having a printed prescription and confirmation of the condition might be handy, but the email was the best I could do. Yet I worried because the email wasn’t translated into the relevant languages and I wondered whether the security guards would engage with them because they were digital. Lesson learned for the next leg of the trip.

When I started the trip I kept all my different types of medication – from painkillers to rehydration sachets – together. Then I split some of them into my other bag, to try to spread my anxiety about a bit and it helped. I buried a couple of packets in beside my walking gear that was mostly unused after Nepal and hoped the south East Asian sniffer dogs were as worn out by the sun as their stray brothers.

Despite all that anxiety, there was only one incident where my medication bag was searched and even that was done rather indifferently by an airport guard in Singapore. That was definitely the most strict country we travelled to where we were told on the plane just as we arrived that if we were carrying any illegal drugs the mandatory punishment was DEATH. They didn’t elaborate by what method but my imagination raced.

And so the anxiety continued until I realised on reaching Bali, our last stop, that I felt a huge weight had been lifted.

As I prepare for the South American leg of my travels, I’m trying to keep that light feeling in mind and challenge a few of the anxieties that weighed me down in south east Asia. But I’m also taking a prescription and letter confirming the condition and my need for medication.