207/365 – Eyepatches and myasthenia

Most people of my generation have dressed up as a pirate at some point. With the stripes, hoops and props, pirates are a cool, relatively straightforward, costume option plus who doesn’t want to get into character by swigging a bottle of rum. After the success of Pirates of the Carribean, in most nightspots around the country a group of Jack Sparrows can be spotted trying to out weird each other. As part of the essential get up, eye patches are widely available at fancy dress shops. But the ones from these shops are just that – for play not every day use.

My first MG symptoms, a squint right eye, gave me really bad double vision which continued on and off for at least the first six months to a year after my diagnosis. Thankfully, I’ve not had full double vision for a long time now. During the early days, I taped gauze pads from Boots over my eye (switching each day) to stop me feeling  nauseous and putting myself in danger. I joked with my workmates about giving them one each to draw pictures on so at least they looked interesting. 

Since then, I’ve had two eye patches bought for me as joke presents. Both were from fancy dress shops – the one pictured above went for a classy red ‘satin’ and black ‘lace’ look while the other one had a diamanté strap and rim. Not exactly my style or the style of anyone who doesn’t aspire to be mistaken for a lady of the night. 

I asked the hospital, doctors and chemists whether they knew of anywhere I could get a proper eye patch so that I no longer had to tape gauze to my face but no one knew. I’ve since looked on the internet but even there the options aren’t great. The gap has made me think about setting up my own business, but if anyone knows of any good suppliers that will save me a job please let me know.

206/365 – One perfect day

Earlier this week I had a perfect day. While it included having a date night salsa dancing, meeting new people and having a couple of drinks, what happened in the day had nothing to do with it being perfect. On the other hand, the fact that I had not long returned from holiday time in Scotland  and had more than eight hours sleep each night for the last week had everything to do with it. On Wednesday, my eyes were perfectly in line, neither had ptosis and I felt incredibly strong. For that one day, I could forget about the MG.

While those rare days of harmony are bittersweet, on this occasion it was more sweet than bitter. Sure, the next day I was disappointed when, looking in the mirror, I noticed that the balance had tipped and my right eye was now bigger than my left. Thankfully, after taking my medication, it settled down although it wasn’t quite perfect. 

These perfect days serve to remind me of what more days might be like if I keep looking after myself, get enough rest and following the doctors orders. 

205/365 – Island life with myasthenia 

I’ve written previously about how where you live can affect your myasthenia, but my last few days travelling around some of the west coast Scottish Isles has got me wondering about the added complexities of island life. 

Regardless of the weather, many visitors fall in love with the Scottish isles and some fall hard enough to try to make a life there. It’s safe to say Elaine and I are smitten – testament to this is we were sitting in the airport lounge coming up with ways we could make living on Skye work. With its close communities, endless options for outdoor activities and ever changing light, it would be an ideal place to call home in the future. However, there are a few considerations that make the prospect slightly less romantic for someone with MG.

1. Getting around

While some of the Scottish Islands have decent bus services, if you want any kind of independence driving is pretty important. While I’m healthy enough to drive around at the moment, if I was having issues with my vision again or had muscle weakness it could be an issue. Even getting to the doctor could be an ordeal.

2. Travel for consultant visits

There are times since my diagnosis where I have been in to see consultants and in the hospital several times a month. That’s not every month but it does happen. From conversations I’ve had, there are neurologists in Glasgow and Edinburgh who treat myasthenia. From Arran that wouldn’t be too much of an ordeal, but from the other islands it would be tricky and tiring.

3. Sense of community

While it would be the same in rural communities, having a support network of other people with myasthenia would be tricky on an island. It would take a bit more effort or creativity to meet people with MG or similar conditions. That could be quite challenging when feeling low. 

4. Hospitalisation

Fingers crossed I won’t be hospitalised in the future, but if I was it would be on the mainland. Similar to the Consultant visits, this would be tricky. In this case, it would also be difficult for family and friends to visit. Also, if it was an emergency I would possibly need to be airlifted.

The way I’m feeling at present, none of these would be enough to put me off – they are more things to keep in mind. If anyone has any experiences of living on an island or a remote location with MG, please share your experiences below.

203/365 – A braw Scottish break

After five glorious days in my beautiful homeland, I’m now on a plane back to London feeling tired but super relaxed. As I recounted in my 202nd and 200th blog, we’ve travelled on four ferries, visited three islands, clocked up around 900 miles in our hire car, seen numerous Scottish wonders and climbed Arran’s highest mountain. Not bad considering we only had four days.

This morning I tried to go on a run, but only had 10 minutes before breakfast so it was more of a short, fast sprint. It’s just as well really because my legs were less than subtlety reminding me of all the climbing they did the day before. I’ve continued to feel heavy limbed today after scaling Goatfell. After convincing Elaine that we should visit the Machrie Moor stone circle (pictured above) on the west of the island, the 4-5km walk felt like a real challenge with my tired wee legs. They made it, but needed some gentle encouragement at times.

The positives

While I’m physically tired, thankfully the fatigue I’ve been feeling in London recently has faded in Scotland. Four out of the five nights we’ve been away I’ve managed to get eight or more hours sleep and I think this has had a significant impact to my energy levels.

 Also, getting out in the fresh air for extended periods has definitely helped. It has made me feel strong but also tired me out in a wholesome way. Give me a wrapped up stroll home over running to catch the tube anyday. 

The negatives

While it might be one of the most beautiful countries in the world, it’s cuisine has got to be one of the most fattening. If I see a cooked breakfast, giant homebake or battered anything in the next while, I’ll be running in the other direction. Also, why does tablet have to be so moreish?! I’m planning a week of nothing but salad to unclog my arteries and delay my imminent diabetes.

Also, Scottish people like a drink for many reasons, a key one being they need warmed up on a chilly July day (I’m coming back in the summer). My liver needs a detox after the last few months and this holiday has been a glorious send off to the joyless land of sobriety.

While I can’t say I’m looking forward to being back in London, I feel in a much better state than when I left. Thank you Scotland for a memorable, fun and healing few days. 

202/365 – Taking on the Isle of Arran’s highest summit

Elaine and I had an epic adventure today – we climbed Isle of Arran’s highest mountain, Goatfell. This Corbett (a Scottish mountain over 2,500ft) towers over Arran’s main settlement Brodick and is rather intimidating from sea level. There arw two main routes up the 2,854ft peak – the tourist route from the Arran brewery car park or the hard route from Corrie. We took the gradual tourist route up the mountain and accidentally took the challenging route on the way back.  

 After days of driving around Skye littered with short walks, we were both ready for a proper stretch of the legs. As it was close to our guest house, it seemed rude to tackle Goatfell….even if it was drizzling and cloudy. What else can you do in that kind of weather?!
The website said the climb would take  four to six hours walking but having seen it I thought we’d be able to cut that down to about three hours. Sure enough we arrived back at the car drenched at around 5pm having set out at 1pm. 

Anyway, the first part of the ascent was easy with a gentle incline. We meandered through woods and fields of heather until we came to a gate which signalled the start of the scrambling over rocks. Thankfully we met a few other idiots who decided to climb on such a dreik day and who encouraged us. As the path got trickier, my legs began to shake a little and I realised that I had left my mestinon in the car. Not smart. 

The top kept evading us as we wound our way up and up skipping boulders now. Just as we reached the last 20metres, thick cloud poured around us and we scrambled to the top as quickly as possible without taking a moment’s pause before heading back down. I don’t know what I thought I needed sunglasses for in the photo below.

Anyway, in our rush to get out of the cloud, we took the wrong path and ended up climbing down the other side of the mountain (on the path for experienced hill walkers…whoops). 

This path was tough and left us scrambling for around an hour. The steps between stones were made for giants and we had to climb through no less than two waterfalls. However, it may have been more difficult but it was also quicker which my shaky legs were very grateful for. When we arrived in Corrie, we found a hire taxi just over the road from the bus stop. The lovely driver took us to Brodick for cash before dropping us at our car all the time regaling tales of other silly people who got lost on the mountain. He picked up one guy at 6am who had been on a stag doo the night before and woke up on the mountainside. Scarier still, he had no idea how he got up there.

After a bath with a glass of red wine, I’m feeling warmed up and my legs are no longer shaking. Today we missed the views of Jura and Ireland from the top sadly, but I had the feel good factor of climbing my first Scottish mountain since being diagnosed with myasthenia. 

Read more about walking with myasthenia here. 

201/365 – Travelling and myasthenia: sleeping in dorms

Those of you who haven’t just stumbled across this blog already know how much I love travelling considering the amount of trips I’ve taken this year already. We are fortunate to live in a time when globe trotting is easy (if you have the money) and, from my teenage years onwards, I’ve wanted to see as much of the world as possible. While there are several continents I haven’t touched yet, in my 28 years on this planet I’ve visited 26 countries and been lucky enough to have countless memorable experiences both in and out of Scotland. One of the common factors of the longer trips away has been sleeping in hostel dorms or more generally shared accommodation.

From exploring the American and Canadian east coast at 19 to the recent experience on the Camino, I’ve had countless ‘experiences’ in shared dorms – some delightful and some I would rather forget. 

Since being diagnosed with myasthenia I have only slept in shared rooms a handful of times including this Thursday night (in Raasay House where I’m pictured above). This is usually because I’m on holiday with Elaine and  naturally prefer a private room. There are several other problems with dorm rooms related to myasthen

Read more about MG and travelling. 

1. Sleep deprivation caused by the inevitable snorer

Yes, there is always one snorer who keeps everyone else in the dorm room up. While it’s not their fault, the impact on someone with myasthenia

The other night in Raasay House the girl on the bunk below me sounded like she was hosting an ogre conference – she managed to rumble and gurgle at the same time. Thankfully my pre-bed whisky helped me to see the funny side. 

While it’s fine to go a night here and there without having the best sleep, prolonged periods while travelling could be dangerous for people with myasthenia. I’ve definitely found intrusive snoring to be less of a problem in small female dorms, but that isn’t helpful for men. If you can afford it, try to mix in dorm sharing with private rooms on a 1-2-1 basis. 

2. Get in early or risk a top bunk

The first beds to go in a dorm room are always the bottoms bunks. While I fantasised about having a top bunk when I was a kid, it’s less appealing now. I am lucky enough to still be strong enough to climb up to a top bunk, but I know there are many other people with myasthenia who would struggle. I’m aware there may come a day when that is the case for me too.

3. Hot hot heat or icy cold

I never noticed it when I was in my teens and early twenties, but shared dorms tend to be unbearly hot or freezing cold. Aside from causing issues sleeping, it doesn’t affect me massively. However, many people with myasthenia find that their symptoms get worse in either really hot or really cold environments. Again, the smaller dorms (4-8 people sharing) tend to be less extreme in temperature so aim for one of those. 

4. Keeping your medication safe

Some hostels/bunk houses have lockers, but many don’t so never assume. Even more than my passport, keeping my MG medication safe is my top priority when travelling. I always take it in my hand luggage and take it out with me if there is nowhere secure to keep it in the room. 

200/365 – Roadtripping in Skye and Raasay

The first part of our Scottish adventure has drawn to a close and what a packed few days we’ve had. As I have still not completed the driving with myasthenia process, poor Elaine had to do all the work while I snapped the surrounding scenery and provided the entertainment (poor things). Thankfully we had a night in a Paisley hotel before setting out to ensure we both (mainly Elaine) felt well rested before the long journey ahead. We then hired a car in Paisley and drove up to the Isle of Skye via Glencoe, Fort William and Eilean Donan castle. 

With the sun shining, the journey was made sweeter with each new dramatic landscape. The road between Fort William and Kyle of Lochalsh was particularly stunning with a new wow-worthy mountain, valley or loch view around every bend. 

The last part of our first day was a little rushed as we had to catch the Raasay ferry from Sconser in Skye. We thought the last one was at 6.15pm but on arrival it turned out there were two later ones. After a flat out last hour, I took a deep breath and prepared for sailing to Skye’s wee sister isle. A tank full of oxygen couldn’t have prepared me for the excitement onboard – wild dolphins doing flips alongside the boat. Even the epic Cuillins skyline that we were sailing away from paled in comparison as the whole boat oohed and aahed at the beautiful creatures.

On Raasay, our bed for the night was just a two minute walk from the boat – the grand Raasay House – and I would recommend it to anyone. As accommodation was so short on both Skye and Raasay, Elaine and I spent our second night in a dorm room in this incredibly community-run house. My next blog will be on shared accommodation and myasthenia, but the house does do private rooms if you book early enough. It also has a selection of outdoor activities each day, a fantastic restaurant and cosy bar where you can watch the sun set over the Cuillins. After an intense drive, Elaine and I had a couple of whiskys with some of the staff of the hotel and Raasay House pup Ruby. (Picture below: top left Elaine delighted on the ferry after seeing dolphins, top right Eilean Donan, bottom left Raasay House Ruby and bottom right Raasay House)  

The next morning, Elaine’s birthday, we were out early and on the (dolphin free) boat to Skye. First up was a quick stop in the island’s main community Portree, followed by a drive up to the Trotternish Penisula to see the Kilt Rock of Staffa and the Quiraing. After a walk into the Quiraing, with photo stops every second step, we were driven off the road by an aggressive bully who drove on as we were stuck in a ditch. Thankfully, a group of lovely Americans and French tourists helped us push little Kia out. 

Next up, I had planned a boat trip from Elgol into Loch Coruisk in the Cuillins. After realising that everything on Skye takes time, we pushed this back and just enjoyed the drive through the Cuillins to the southern tip of the island. When we did arrive at what felt like the end of the earth, it was worth the white knuckle experience of the hairpin bends and dodging cows and sheep on the road.

Once onboard the Bella Jane, the guide shared stories of the small isles (inner Hebrides) Rum, Eigg, and Canna before we were face-to-face with a colony of seals lazing in the afternoon sun. Loch Coruisk, in the heart of the Cuillins, was even more beautiful than I had imagined surrounded by the jagged Black Cuillins and softer Red Cuillins. (Picture below:  top left view of the Cuillins from Elgol harbour , top left Kilt Rock and bottom left the Quairaing)  

Arriving back on dry land even more in love with Skye, we checked into our B&B before heading to Coruisk House for Elaine’s birthday dinner. The restaurant with rooms is owned and run by a Londoner who is passionate about using local, fresh produce and changes the menu every day depending on what’s available. The food was incredible – don’t salivate too much at the pictures below – and the staff and setting were equally special. We shared a bottle of Malbec and discussed dreams of moving to Skye as the light faded and the sky burst into reds and oranges. (Picture below: top left Elaine enjoying our cosy table at Coruisk House, top right Veal, bottom left out amazing parfait and creme brûlée desserts and bottom right monkfish and scallops)  

Although today we planned to travel to Dunvegan to check out the castle, time was a little short so we ran up the Old Man of Storr instead. While my eye has been better over the last few days, after the burst of exercise this morning it’s been looking great ever since. 

Now we’re on the road to Arran where we’ll stay until Monday. After a hectic few days of sightseeing and driving, the plan now is to spend our time walking and running. After all the gorgeously rich food we’ve been eating, a bit of fresh air and exercise is well needed before the return to London on Monday evening. 

199/365 – Last ‘break’ for a while

Elaine and I fly up to Glasgow tonight and will spend her birthday in the Inner Hebrides. On paper, the five day break looks hectic with lots of miles to cover, three Islands to explore and a promise of some action for our walking boots. However, I’ve always found visiting the Scottish isles relaxing due to the laid back mentality – the locals start work at ‘9ish’ – and being immersed in stunning scenery.

It’s Elaine’s first trip to the Hebrides and a life long dream after being delighted by the Scottish travel tales of her grandparents. While trying to see as much of the islands as possible, we’ll also try to get a well deserved rest. This will be our last holiday together for a long time so the emphasis will be on relaxation and exploration in equal measure. 

After a rushed finish at work today, I’m ready for being surrounded by dramatic landscapes, for a dram or two and unruly sheep roaming free. My signal may not be great over the next while, but I’ll try to update the blog when I can. 

198/365 – Dizziness and myasthenia

I’ve been called dizzy many times in my life, but had rarely felt the disorientating sensation before myasthenia. Since I started taking medication, particularly the immunosuppressants, I’ve felt that light headed sensation every now and again. 

Usually it happens when I stand up too quickly or if it’s really hot. When I first started noticing it, I thought I wasn’t drinking enough water or getting enough sleep. While both of those are still be true from time to time, it has happened too often to be about just those things. Typing dizziness and myasthenia into google, a couple of pages about vertigo came up linked with mestinon so it’s worth bringing up with my consultant next month.

At this time, it feels like a relatively harmless side effect of my medication but I want to make sure there’s nothing underlying it. When it happens, I have to steady myself on whatever is nearest (for instance a phone box….spot the tenuous photo link) for a second to stop what feels like an oncoming blackout. 

If you have had a similar experience or have any more knowledge about what can cause the dizziness, please comment below.

197/365 – Setting the boundaries

At the wedding I wrote about in my last post, one of my friends told me about her recent diagnosis with an auto immune disease. She’s still in the very early stages of dealing with it and hasn’t sought support from people with the same condition yet. She was saying many things that went through my own head during the early days of MG and is currently battling many things I still struggle with. 

The main thing she was swithering with was going full throttle with dancing and drinking or holding back knowing that she would be in a better state over the following days. I too have this fight regularly – I’m pictured above on the day after the wedding in ‘recovery’ mode. It’s the constant battle for someone living with a condition like ours – the instant reward of having fun in the moment and dealing with the consequences later or being steadily well behaved. It’s what the spoon theory is all about. 

While people deal with this differently, being consistently well behaved is hard to adapt to for my generation as we’re told that it’s boring. So it’s a balance I haven’t mastered nor am I particularly keen to get to grips with. It takes strength of character to say no when you know yes is the fun answer. It’s the space where you might lose ‘friends’, where ‘relationships’ might break down and where you try to figure out what your new limits are. 

There are no easy answers and, as I say, it’s still something I still battle regularly. The main thing is being honest with those around you and expecting them to understand. If they don’t, it’s time to start questioning why they deserve a place in your life. More often than not, I find my loved ones gently challenge me if I’m being wreckless or destructive.