Tag Archives: 365 days of myasthenia

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.

300/365 – Good days vs bad days

Following on from the post about using digital tools to tell your story of myasthenia, a colleague of mine found a tool while on a secondment and I had to try it. The tool slides from one image to another and therefore can show how things change. I thought it would be good way to show what good and bad days look like when you are affected by the ocular symptoms of myasthenia gravis.

To see the image, click on the link below:

https://cdn.knightlab.com/libs/juxtapose/latest/embed/index.html?uid=4849cfd4-880a-11e5-a524-0e7075bba956

On days when my symptoms are minimal, it is easy to pass for being condition free. On bad days, I can hardly lift my right eye. While the images at the top of my daily blogs are meant to track how different I can look from day-to-day due to the fluctuations, they don’t do it as clearly as this tool.

You can use this Juxtapose tool on the Knightlab website.

119/365 – Record month for 365 days of myasthenia 

April has been a good month for this blog. While the visitors have not been as high as January (955 unique visitors compared to 716 in April), the other measures have grown massively.

At the final count yesterday, I was only 40 views away from 3,000, I had 716 visitors, 50 likes and 23 comments. That level of engagement is exactly what I want.

The most positive thing for me is the growth in traffic from search engines. People are coming across it when looking for myasthenia information online, mostly google, and I’ve got to hope some of those people have the condition. Having reached almost 3,000 people over the last four months I would love to know more about the break down of my readers. Once the election is done next week, I’ll hopefully have more time to work on the poll.

Anyway, thanks for all your views and interaction this month. Let’s make May even better and reach a wider audience!

  
 

60/365 – Massage and myasthenia gravis 

When I woke up this morning, I decided it was a ‘spoil Laurna day’. Although I had been treated to celebrating my birthday in Copenhagen, I didn’t get a chance to treat myself. And, since finishing off my prosecco and cake in the cafe around the corner from our hotel, everything has been quite manic. Call me whatever you like, but with my first wage from my new job I decided a treat was in order. The only criteria was that it had to be totally self indulgent. I looked at shoes and jewellery in Copenhagen, but none were quite right. When I got an email this morning about an available massage in my work’s beauty salon – I realised fate had stepped in (and was willing to charge a very reasonable price ).

Getting a massage is a real treat for me – in fact today was my first professional massage in London. When I lived in Aberdeen, I used to get regular massages and they really helped with the continual build up of knots in my back and shoulders from exercise. But when I moved down south, I had very little money to spare and fell out of the habit. 

Benefits of massage 

What benefits does massage have for people with myasthenia gravis? Results that are proven – none. No matter how many times I read that a good massage can heal the body, it’s not going to stop my rogue immune system attacking itself. 

However, there’s no doubt that massage relieves stress, even if only temporarily, and stress is a key trigger for increasing MG symptoms. I’ve been feeling tense over the past fortnight, and think along with the break from my gluten and dairy free diet and increase of alcohol in Copenhagen, it has played a part in making my ptosis worse and my legs and arms feeling shaky during and after exercising. In short, stress is bad but massage is good. 

A chance to be still

Alongside alleviating muscle tightness and stress, it’s also a great opportunity to let yourself be still. I felt very calm during my time in Copenhagen, but the daily commute and heavy workload at present have threatened to make the feeling of stillness quickly forgotten. After getting eight hours of sleep last night and attending a yoga class at lunch, I was still feeling semi-relaxed by the time I entered the beauty parlour this evening. However, the 30 minute back, neck and shoulders massage by Andrea Edmead has left me feeling completely calm all over again.

While the lasting benefits of a massage versus the luxury of the expense could be debated all day long, if that 30 minutes leaves you feeling more relaxed for hours afterwards, never mind days, then it’s worth putting the time and money aside. While I got a £25 bargain tonight, with regular  Groupon deals there’s no reason why getting a massage needs to break the bank. 

While spoil Laurna day may have drawn to a close for another year, my back was, unsuprisingly, not in a good state today. The tension has eased a little but I can still feel the knots burning in my back. So I’ve decided that it won’t hurt (much) to have a treat Laurna day every month.

56/365- Copen-haven’t yet

Excuse the terrible wordplay in my title but I want to cut straight to the chase. Sometimes two intelligent people (well…we have degrees and challenging jobs so I’m going to pretend) can only look at each other and laugh at their own stupidity. Yesterday, Elaine and I had one of those moments as our train pulled into Stanstead airport and we remembered that we were actually flying to Copenhagen from Gatwick. In fairness to us, we are flying back into Stanstead..but still. As hovercrafts are still a thing of the future, and we didn’t feel like nabbing a plane and crew to fly us across London, it was better to admit right away that our flight was a bygone. 

We holed up in the Scandanavian-esque Costa coffee to look at our options. Of course the cafe had no signal in an airport full of it, but eventually we got connected to the airport’s wifi (for the small price of giving it unlimited access to spam our mailbox). The options were sparse. There were no flights that didn’t include a stop over on Friday and the next best option wasn’t until first thing Saturday morning from Luton. Noooo…not Luton. The same Luton that takes a lifetime to get to from, well, anywhere.

After checking out some rather extortionate options, we bought the Luton flights knowing that it would only cut into our Copenhagen time by a few hours. Also, thank goodness to Easyjet the flights were pretty cheap. Now we had a way to get our weekend break, and had decided to make the most of our first night ‘away’ by booking a glamourous airport hotel, but how did we get to Luton?

Although it’s only an hours drive from Stanstead, my Citymapper app suggested it would take 112 minutes on public transport and neither of us had our driving license to hand. Taxi…that’s a bit extravagant right? It was £75 private hire which is less than it would have cost us both to take public transport. Pretty disgusting really. 

Thankfully our cabbie was prompt and knew shortcuts to avoid the Friday night rush-hour traffic. He also didn’t mind making a toilet stop for the small price of a cappuccino. 

By the time we reached the Luton Ramada, I felt sick from all the excitement (and possibly the mini eggs). I had a lie down before dinner in the hotel – the option of heading into Luton was mooted and quickly dismissed considering the 5am alarm. (Below is our hotel in all it’s glory this morning)



Like all travel misadventures, yesterday was all about what we made it. We spent the night catching up and chatting about things big and small, from the Assyrians to Beyoncé, over a lovely steak dinner and glass of Pinot noir. What we had decided would be an early night turned into a late one as we continued yapping over a night cap. Although the view outside was of a motorway, we could have been in a million more scenic spots and it really wouldn’t have mattered. 

I’m feeling drained today – from the stress of yesterday, the late night and the early morning – but mainly I’m bursting with excitement as we are just about to board our flight. Because of the mishap, arriving in the Danish capital is going to feel even more special now. 

Happy Saturday everyone!



55/365- Happy Rare Disease day

The day has come – Friday the 28th is international Rare Disease day and people all over the world are meeting to discuss, fundraise and raise awareness about conditions like myasthenia gravis.

Today, it’s going to be difficult for me to engage in any of the events as I’m going to be working from home and then flying to Copenhagen for my birthday weekend. However, I’ll be looking for ways to raise awareness online. I also shared my story on the Rare Disease homepage, which you can do to. I’m just waiting to see if it gets approved.

I’ve tried to do my bit through this blog and also by sending a couple of stories to national and local press about people living with myasthenia gravis. Sadly, there has been no pick up so far but I’m hoping we will still be able to get the stories printed without the rare disease angle. These women are not only inspirational but their stories would raise awareness about the younger generation of people with myasthenia gravis. They have also been very brave in sharing their stories with me and I want to do them justice by getting them printed.

Lessons learned

I’ve learned a few valuable lessons about the way to approach getting media coverage in future.

Time: Although I am a qualified journalist, I forgot the amount of time required to get stories into the press. I also didn’t give myself enough time to chase them up properly, which is what I often needed as a reporter to get a story in print. 

Content: I wrote the women’s stories as articles rather than press releases because that’s what I’m familiar with. However, I forgot what it’s like to work in a manic newsroom – press releases are easy to deal with as you are used to turning them into stories. Pre-written articles are no doubt more problematic. I thought I was making it easier but in fact I’ve probably just confused them.

Support: As my new job is ramping up, I was very short on time to write and send the stories out to the media. This is when I should have asked for support from Myaware. Instead, I’ve asked for it too late. I’m hoping I’ll be able to get the staff there to help turn these stories into press releases and get them some well deserved coverage. 

Anyway, they are all valuable lessons to learn and hopefully it’ll be easier to get press coverage in future. 

Happy Rare Disease day everybody – let me know in the comments if you are celebrating!

50/365 – First big milestone

I know I said I would write about the spoonie theory today, but then I realised it would be my 50th post. It seemed like a substantial milestone… and then I worked out I still have 315 posts to write. So at this point I’m around a seventh of the way through my 365 days. This is strange as it feels like I just started putting it together yesterday and yet I reckon I’ve already spent about 50 hours (roughly an hour per blog) writing.

Thank you
At this first ‘milestone’ I want to thank the many people who have engaged with the blog.

First of all, thank you to fellow people with myasthenia who have commented, emailed, shared and liked this blog. It is ultimately for you, and for those like us to come, that I am writing every day and I appreciate any feedback, negative or positive, that you have. I’m keen to develop the blog so any ideas you have for this are greatly appreciated. One idea I like is potentially encouraging others to take up the challenge of doing either 100 days of myasthenia on either social media or via their own blog. If you are interested in doing this please get in touch. The more people we can get to show the daily changes and the different issues we face, the more awareness we can raise about the condition.

Secondly I want to thank my family and friends who have been hugely supportive. My mum, who I have staying with me this weekend, has been a source of inspiration for different entries and has constantly supported me with this. At the same time, she has constantly checked that I’m not finding it too demanding/emotional to undertake. This weekend she has told me several times that she is proud of me for what I’m doing and it means a huge amount (that’s why my number one fan is pictured with me today).

Many of my lovely friends have engaged with the blog and shared their thoughts on it. The fact that they/you are taking time out of their/your busy lives to read it is massively supportive and means a lot to me. I hope that it continues to be educational and interesting, and, for friends that live far away, that it makes the distance feel less.

To Elaine, I also say a massive thank you. I understand that my writing this blog it isn’t always convenient and that it can cut into our time together, but you have made it clear, through listening, encouragement and engaging with the content, that you understand this is important to me and that you support me. I hope I can do the same for you in the future.

Moving forward
I’ve had almost 4,500 views over the last two months, and readers from all over the world, but I want to keep reaching more people.

So I hope by the time I write my 100th entry, I’ll have been able to secure some news coverage and add a couple of video entries. I’ve tried filming a couple of videos with Vine but they’ve turned out terrible. However, that’s next on the to do list as I’m running out of creativity with the selfies. If I’m getting fed up taking them, I’m sure you’re getting fed up looking at them. Still, I hope the point of having them is clear – to show how the condition fluctuates from day-to-day.

Thanks again everyone – your support means a great deal to me. Please let me know if there’s anything you’d like me to cover that I haven’t written about yet.

43/365 – Flexible working

Yesterday I took the opportunity to have my first day working from home. It’s part of the civil service flexible working pattern that employees are actively encouraged, if it works better for them, to work from home for one or two days a week. It’s the first time I’ve ever been encouraged to do this, although in my previous role the team were very flexible about working from home. This flexibility wasn’t a consideration when I applied for the role, but come yesterday I was definitely glad of it.

In my first two weeks in the new job, I arranged what felt like back-to-back meetings to ensure I have a good overview of how different sections of our department work together and to see how my team fits into this. These meetings have been really interesting so far and given me lots of potential projects. But after hardly getting a chance to sit at my desk, not to mention getting used to working five day weeks again and the aforementioned fatigue around it being my time of the month, I was thoroughly done in by end of play on Thursday. On top of that, I then had a three hour refresher course for the volunteer counselling I do for Childline.

By the time I got to bed, I was so grateful for the next day’s break from the commute and full day of meetings. It also meant I could get on with many of the tasks I hadn’t had time for during the week and play a bigger role in helping my team out with the day-to-day responsibilities.

While I know it doesn’t work for every kind of job, it’s a shame more office-based roles don’t allow for flexible working. I’ve heard recently of several people who have had to leave because their employers aren’t willing to be flexible and it just isn’t practical for them to work from an office, often far from where they live, for five days a week. I think whether it’s to do with having children, having a lengthy or extremely expensive commute or having a condition like myasthenia, the more employers that get behind flexible working the more motivated the workforce will be. What’s stopping it when all employees need is to be able to connect to a computer remotely or with urls? Here I’m pictured with all I need to work from home.

31/365 – Breaking myself in gently

Last week I made a big decision about my pilgrimage in May. I decided that something was more important than doing lots of training, resting well and understanding the challenges of the route in advance. More crucial to having an enjoyable trip than these three things combined this year is the investment in a good quality pair of shoes.

As I wrote about here in Girls Gone Wild, last year I had too many blisters to count during my five days of hiking the final stage of the Camino.

Excluding a day of 31km where I struggled, my muscles felt comfortable with the daily distances of 20+kms. My feet, however, did not and I was reduced to tears on several occasions bursting blood blisters. I’ve decided to try to do all I can to stop a repeat performance this May and thought the obvious start would be investing in a decent pair of walking boots. Whereas last year I spent £30ish, this year I’ve broken the bank with a North Face pair and had the pleasure of trying them out this weekend with a 10 mile jaunt around Lea Valley park from Cheshunt with my friend Keith.

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Out of the city we went and spent several hours exploring a beautiful part of Hertfordshire in the rain and the snow. I’ve included a selection of my favourite images from the walk and also a snap of a much appreciated real fire we parked ourselves in front of halfway through out trek to dry out.

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Although breaking my boots in was one of the reasons for clocking the miles up, another was to see how my muscles would cope with the longer distances. While the course was very flat, and I did have the odd tingle in my calves from the cold, my body felt tired in a strong way afterwards. I even managed to walk the additional 2km home from the station without too many complaints.

And my feet….well there wasn’t even a hint of a blister. I know that the added stress of the backpack and heat will up the likelihood of them appearing but I get the feeling, this year, there are going to be less tears shed and curse words shared when it comes to taking my boots off at the end of the day.

29/365 – Last post about work for a while

As a follow on from yesterday’s ‘false start’, today was my first in the DCLG building. Tonight I’m exhausted but that will not stop me from writing this. I feel like I did on my first Friday after starting my post-uni, full-time, job…when I fell asleep on a pub table with a big smile on my face.

Part of the fatigue comes from throwing myself into the new role by trying to tick as much off the to-do list as possible. Having had a few weeks to plan what I’d like to achieve in the role, I felt a sense of urgency to make a start on as many fronts as possible. With this in mind, I’ve also slept terribly the last couple of nights and would have injected caffeine into my eyeballs, if I could have, come 3pm.

Other than being shattered, my first day in the office was really enjoyable. I got to see the work my team does on a day-to-day basis, arranged a million and one coffees to meet key people across the department and beyond, and I started thinking about ways to develop what the content team does. I was given a warm welcome by the director and didn’t get lost once (quite a feat in such a sprawling building).

Here I am in professional mode in yet another toilet shot.

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On a personal level, I also checked out what the building’s beauty salon has to offer and booked myself an appointment to sign up to the fitness centre early next week. Best of all, as a Scot, I was programmed from birth to appreciate a bargain and the canteen’s lunch did not disappoint. My £2 lunch included a large bowl of tasty Broccoli soup and a potent coffee (pictured below) that stopped me from yawning my way through the afternoon. Just a tad more affordable than Canary Wharf’s cafés.

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Once the working day was done, some of the wider team met for Friday evening drinks in the local pub and I felt it would have been rude not to accept the invitation.
But after a well deserved glass of Shiraz Viognier, or two, I could feel my eyes starting to droop and my body protesting that it was time to go home. So…I listened to it (taking today’s photo on the way back to the tube).

Now I’m all tucked up in bed reflecting on my first real day ‘in office’. One thing I will aim to keep in mind, when beginning my first full week on Monday, is that I should see my new role as a marathon not a sprint. There’s plenty of time to do all the things I want and more, but it’s important not to burn myself out. So when I’m putting together my schedule for next week, it must include relaxation time…perhaps even a facial at the beauty parlour.