A Trip to Wales with Lymphoedema

Just beyond Dinas Mawdwwy in the north of Wales, nestled at the bottom of a great sloping hillside there is a beautiful quaint cottage. Surrounding the cottage, acres of green bracken punctuated with grey mossy rocks and arching trees can be seen from the kitchen through it’s rustic stable door. A huge fireplace warms the house through, though you need to be careful not to bash your head on the low hanging beam just above it.

39504279_10156544217429402_1257533898481467392_n

In my very first few blogs of Left Leg First I described the nasty encounter I had with cellulitis last summer. The cottage described above is that same cottage I retreated to upon being discharged from hospital. It’s a very special place for me and for all my friends and we have visited it every year for the past decade. It’s a peaceful place full of character and every piece of furniture seems to hold a different story and a different memory. The mugs hanging from the rack never seem to change. The beds creak and the cupboards are full of dusty boardgames with clues to answers I’ve rarely heard of. A freshly brewed pot of tea always sits on the table and muddy boots, damp jumpers and raincoats hang in waiting by the door.

Read More

Is it Possible to Travel to Indonesia with Lymphoedema?

In this post I describe the realities of travelling to Indonesia with lymphoedema. I had no idea what to expect from Indonesia. Well, I say Indonesia, but I only visited Bali and for a brief period, due to a certain volcano, Surubaya; the country’s second largest city. It really is a wonderful place, full of smiles that stretch across some of the friendliest faces I’ve ever encountered. Everyone wants to say hello. Everyone wants to be your friend. It took me a week or so to get use to waving so much. I’m from the UK. The South of the UK, near London. We don’t say hello. We hide from conversation, and panic when we catch someone’s eye accidentally, diverting our gaze to the adverts that line our underground trains. If I were to tell you every moment of my time in Indonesia we’d be here all year. So instead, i’m going to cover the noticeable lymphoedema related elements and save the day-to-day highlights for a separate post. Bon. Overview Bali is place that has seen a real surge of tourism in a short period of time. For some locals this has been wonderful, for others not so much. But if we put the argument for the consequences of tourism aside briefly, I’ll talk you through what you can expect from one of my favourite ever places. Lots of fruit. Lots of mopeds. Insects of every variety, from the swat-worthy fly to the infamous mosquito, the praying mantis and beyond. Hills, rice fields and mountains. Big beaches, arching palm trees and unlabeled spirits – drink this at your peril. Dogs, cats, rats and bats and plenty of roosters. Geckos, lizards, turtles and cork-screwing dolphins. The food was great, we ate mostly in what the locals call warungs – i.e. restaurants. However, in places like these, don’t expect a loo seat and never expect toilet roll. If you are looking for comforts closer to home there are plenty of cafes and restaurants catering to tourists. We, Charlotte and I, visited during the rainy season (mid-November) which meant, unsurprisingly, it rained. But not how I expected. It wasn’t torrential downpour every hour of everyday. No, in fact, it came in bursts usually only once in the day for an hour so. But boy did it come down. Starting in the south near Seminyak, we headed north passing through Ubud until we got to Lovina. After that, we departed the mainland and visited a small set of beautiful islands to the east by the name of Gili. Then, in an attempt to flee a brewing volcano, we headed out of Gili and caught a flight to the biggest island of Java. How did my lymphoedema get on? Quite well, actually. Although it was hot, which took some acclimatising, we were never too from water to swim in. Pick your accommodation carefully for somewhere that looks hygienic (inside and pool area) and make sure to pack aloe gel – apply it daily to your problem areas. See more travel tips here.

I tried to drink a fresh coconut every day. They are so cheap in this part of the world and you won’t have a hard time finding them either. Make sure you walk when you can to build up fitness and stimulate flow in the lymph, but don’t be afraid to take a taxi when your body tells you it needs a rest. Often I felt fine, but then all of a sudden I needed to stop, find shade and rest. That might just be my most important tip – listen to your body! We were never on the road for too long and even on our longest journeys we travelled by car with our own personal driver. His name was, and I’m sure it still is, Bagus. But more on him in a later post. Drivers are of minimal cost and allow you to customise your journey, stopping for rests, lunch and areas of interest. Good food is plentiful in Bali and cheap too. Both Charlotte and I agree that we have eaten the healthiest food in Bali. Things to be aware of For all the fun I had in Indonesia, the country is still developing and there is still widespread poverty once you look past the westerinsed cafes which dominate key tourist spots. Not only is this saddening on a moral level, but it also plays into treating lymphoedema as well. In most places the streets aren’t clean. Combine this with torrential downpour and you have yourself streams and puddles of bacteria. Keep an eye on this. If you are wearing sandals, you will find yourself hopping around them daily. Pot holes punctuate the pavements and could be lethal if you are not paying attention, especially at night. Look out for exposed nails and sharp items on the ground, fences and buildings. We had to change our route unexpectedly when Mt Agung started to show signs of eruption. This meant emergency budget needed to be allocated to flights, with more time spent planning an escape route instead of caring for my leg. Just be aware you are sitting on a very naturally active part of the world in Indonesia. I’m not an insect kind of person. We saw a praying mantis which was a treat, but anything that bites or stings I tend not to be the biggest fan of. Indonesia was full of them, although with plenty of bug spray you should be fine. I have worn trousers most of this trip just as a double layer of protection. If you don’t drink enough water the heat will win and your lymphoedema will suffer. It’s simple, drink water regularly. On one or two occasions I became overwhelmed by the constant need to pay attention to my leg, but this is part and parcel of travelling with a chronic swelling condition. What was the usual go-to remedy? Water, water and more water. There’s a shoes off policy which is common across most of South East Asia. If you’re visiting a temple, a hostel and even some shops, expect to take your shoes off. Make sure to bring wipes with you, as well as a pair of socks to wear indoors. Should I visit Indonesia with lymphoedema? This a completely personal choice. We all experience lymphoedema differently, we all react in different ways. For example, when I’m stressed my lymphoedema suffers, but I’m not too bad on long journeys. I didn’t spend months getting fit. In fact, I was only a few months out of A&E when I hopped on my first flight. You need to know your body and its limits but, I urge you not to be afraid of travelling. Yes it’s harder for us than it is for most. Yes you WILL have plenty of frustrations along the way. However, no amount of swelling, if kept under control, will beat the feeling of discovering the world beyond your doorstep. Make a plan, cover all scenarios (including the risk of cellulitis), stay hygienic and you will be absolutely fine.

5 Things I’ve Learned Travelling South East Asia with Lymphoedema

Travelling with lymphoedema presents the backpacker with more challenges than they can count on their grubby little fingers. However, if approached with a little extra care, exploring the world and its vast beauty is still very much doable.

So, with that in mind, I’d like to share with you some of the lymphoedema lessons I have learnt whilst travelling and how they’ve affected me both physically and mentally. Here it goes…

Hygiene rules

To quote my first international therapist, Veronica, whom I met in Singapore, “you’re in Asia now darling”. She said this in response to me asking how often I should be washing my newly purchased stocking. The answer? Every day. You’re in Asia now is referring to the dominating heat which breeds bacteria.

Hygiene effects where you eat, swim, sleep and even where you walk. You need to be aware of your surroundings everywhere you go. Temples with no shoes policies. Pavements with rancid puddles. Hostels with dirty showers. The list goes on and on. Bring anti-bacterial gel, wipes and be ready to embrace some pretty unhygienic environments.

Put yourself first

It’s frustrating. I’m twenty-four years old and want to be as care-free as my age would suggest. But, for all things lymph related (which is just about everything) I can’t be. Darting runs into the sea? “You go ahead I’m just going to put my sea sock on just to make sure there’s nothing sharp”. Rock climbing? “I’d rather not, I’m not too experienced and don’t want to cut my leg”. Could you just grab the charger from our room? “Actually, no. I’ve just sanitised my whole foot and don’t want to run bare foot through a dusty dorm”.

It sounds minor, but I’ve been travelling around six weeks and it doesn’t stop. It’s surprising how often you need to put yourself first, but you don’t really have a choice. You’ve got to suck it up and do what you need to do. Exploring a museum? Ask for a stool to take around with you. Catching a minibus? Ask to sit at the front. Queuing at passport control? Ask for medical assistance. It’s hard at first, and I required a firm nudge from my girlfriend, but once I had done it a few times it became much easier. Trust me, it’s not wise to ignore your bodily signs for the sake of politeness or saving face, it’ll just ruin your plans for a later date.

It’s getting hot in here, so take off all your clothes – except your compression garment.

Ah Nelly, if only it were that simple. As we established in point number one, Asia is hot. Seriously hot. For lymphies (if you have the condition you’ll know all too well) heat is the killer (figuratively not literally). Unfortunately, if you want to travel around Asia you’ll need to learn how to manage your condition in the hottest part of the day. On numerous occasions the sun became too much for me and I had to retreat to the shadows like some sort of swollen vampire.

Rule number one is stay hydrated. Rule number two is always wear your compression garment. Rule number three is treat your limb whenever the opportunity presents itself. Seriously, if you have a moment, get that limb raised and start the drainage. It doesn’t matter if you are in a café or on a boat, do what you must.

For me, the best response to the heat has been water. I have a guideline that I have been loosely sticking to: pick places right by the sea and if you can’t, pick places with a pool. Hydro-running is super-effective and will help to shift your lymph.

Nobody has a clue what lymphoedema is

But then again, why would they? I have had some strange looks from all sorts of people. Travellers, tourists, families, locals – everyone is included in the people that pull weird faces at my leg club.

A few fellow hostel dwellers thought I was in an accident. Another thought I had burnt my leg. Most people just stare at it, look me up and down, momentarily try to figure it out, then proceed with their life. I did however have a man on a bike in Thailand cycle up to me, stop, point, then burst out laughing. It was like something out of an American high school. I’m sure he wasn’t thinking “that boy has an impaired lymphatic system, that is funny to me”, but nonetheless, it was sudden, jarring and caught me off guard.

Hazards. Hazards everywhere.

Travelling is full of wonder. Glistening seas, beautiful people, exotic animals and tasty food. It’s also FULL of hazards. Strangely enough you get used to it, but everywhere I’ve been to in South East Asia so far has been full of red flags.

Bugs, as you can probably imagine, are everywhere. Mosquitoes we all hate (sorry, if you don’t mind them we can’t be friends) and they’re expected. Red ants on the other hand are kind of cool but boy do their bites sting. I’ve found them at dinner on the table, on the wall whilst waiting for a bus to come, and even in my bed.

The pavements in Indonesia casually have enormous holes every twenty metres or so. It’s due to the cost of maintenance but they are particularly lethal at night time as they are not taped off. Buildings with broken windows, fences and walls are all too common and if you’re not careful it’s easy to catch yourself on a nail.

In Malaysia, dogs with a tendency to bite roamed around the Cameron Highlands. Most taxis don’t have seatbelts.

Been to this part of the world? Let me know some of your own experiences!

Travelling with Lymphoedema: The Airport

I’m currently travelling around South East Asia for four months. My blog aims to spread awareness on lymphoedema as well as highlighting the highs and lows of travelling with the condition. This post explores some of my experiences of using airports and how it effects my condition.

My earliest memories of the airport come in the form of my father herding my family like cattle into the back of his car at two in the morning, a good five years before we were due to check-in. The issuing of passports and other such documents were usually left till we had arrived at the airport and without fail, every holiday, one of my dear siblings (you know who you are) would cause some sort of commotion. Nothing major. You know, the usual last minute panics like forgetting to turn off the hair-straighteners or deciding to change your outfit whilst the rest of your family sit in the car waiting and cursing your willingness to jeopardise the one holiday we were going to have that year.

Things were much simpler back then. I had no responsibility whatsoever except, of course, carefully selecting the sweets which would stop the families ears popping.

Fast-forward fifteen or so years and I still take that responsibility very seriously, but I also have one or two more that I didn’t expect to have. If you’ve read any of my previous blogs, or perhaps even the title of this blog, you’ll know that I have lymphoedema in my left leg (shock horror) and the airport is yet another experience made that little bit harder by the condition.

Make the airline aware in advance

Leaving the UK was a mixed experience. We checked in on time, said goodbye to the parents over breakfast, and even found the time to buy a puzzle book for the flight. We were flying with Qatar Airways and a few days before we were due to depart, I decided to give their customer service team a quick call to let them know about my leg. In the end, after a few easy conversations, they were able to seat me right at the front (not in business class to my disappointment) which gave me the space to keep my leg stretched out.

We flew to Denpasar (Bali) via Doha, which amounted to fifteen hours spent in the air. Combine that with queuing and waiting at both ends for security, baggage and boarding and you have yourself a swollen leg. My lymphoedema really didn’t like the pressure. I could feel things twitching and bloating internally which caused me some level of discomfort. Before I left, my doctor explained to me that I could be at my most vulnerable after a lengthy flight. My body was already working overtime to make sure my lymphoedema was in check during the journey, so suddenly exposing it to the intense temperatures, biting insects and other threats of South East Asia was something to be aware of.

Somehow, you’ve got to keep the lymph moving. Be prepared for some strange looks from other passengers as they will wonder why you are sat on the floor of a plane stroking your body. Do it anyway, you’ll thank yourself later. Drink plenty of water and make sure you wear your compression garment.

This slideshow requires JavaScript.

It all stacks up

At the time of this blog post I have already been travelling for just over a month with three more still to go. I started my adventure in full health with my leg in a good place but since then, there have been ups and downs with pain and comfort levels fluctuating daily.

In total I plan to visit eight countries across Asia. This means a lot of journeys using public transport which, as you’ll know, is all a part of travelling life. The thing is, there is only so much you can do to take care of your condition and some external factors you simply can’t help. Intense nature, mosquito bites, unexpected walks and traffic jams are inevitable. For example, whilst travelling around Indonesia Mt Agung showed signs of erupting and my flight to Singapore was cancelled. This meant a last minute rush to get off the island to avoid missing out on other plans. I started that process in great shape; I ended it tired, sore and stressed.

I’ve tried to do things with a typical traveler approach, going with the flow and all that, but that lack of structure means last minute decisions are guaranteed. An internal flight here and there enables you to explore more but it can also mean no time to make airlines aware of medical conditions, standing in long queues with a very heavy rucksack, and sacrificing your health and comfort for the chance to do something amazing. In spite of this however, if you look after yourself during the down time, you’ll be fine when the tougher times come calling.