Commuting with Lymphoedema

Please offer me a seat. That’s what the badges for people with a disability have written across them. Well, in London at least. They’re about three inches in diameter, blue, and I wear mine centrally on my chest.

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I started a new job a few weeks back and with it came a new commute. There’s a lot of rubbing shoulders, armpits in faces and every so often, an unshielded sneeze. Everyday involves a competitive slalom through the tunnels of London’s underground stations. I travel up and down grumbling escalators which connect streams of people from the outside world with the warm, sweaty innards of London’s tube stations. There’s one or two please mind the gaps, plenty of major delays and even the odd this train has now changed destination – a personal favourite of mine.

Onboard you’ll find Kindle readers, tablet tappers, music players and non-stop laptop must-get-my-work-finished-ers; all off to make a buck, some off to make a few. It’s always busy and bustling during rush hour yet, despite the congestion, the trains tend to be silent. The only sounds you’ll hear at this time is the screeching of rickety wheels and tannoy announcements reminding you to hold the hand rails and report suspicious activity.

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I am a reader and a watcher. I spend most of my journey reading my Kindle, but if I don’t fancy that, I stick my headphones in and people watch. Humans are entertaining – even more so when listening to a piece of cinematic music. They seem to sway in perfect harmony to the sounds of the instruments, almost like the instruments know what’s unfolding before you.

During the first part of my journey I always get a seat. It’s the first stop on the line meaning there is rarely any competition. Three stops in and I stick my blue badge on just as the train starts to fill. As the doors open new arrivals pour onto the train, each of them scanning the carriage for empty seats. Envious eyes look down at me in my seated comfort. The slightest movement from a sitter and like sheep in a field, the standers will turn their heads in hope of giving their legs a break. There is no reason for me to stick my badge on this early. I know I’ll get a seat and, like the rest of the carriage, I am entitled to a seat. Yet, due to my age I feel the need to show people that actually, I need to sit as much if not more than they do. It’s a strange insecurity and if anything invites more stares than if I left my badge off.

After an hour or so the second part of my commute commences. I get off the first train and walk about six paces across the platform to the next one. By this time the new train is already packed with every seat taken. Small crowds gather at each of the sliding doors and one-by-one we shuffle onto the train. I try to stand in the aisle so I can grab a seat if needs be and thanks to my badge, about sixty percent of the time i’m offered one. Understandably, at eight in the morning, people don’t want to interact with strangers, they just want to pass the time. The best way to do that? Hold on to something physical. Whenever I step onto the train I try to make my badge viewable. The thing is, most of the passengers are facing downwards with their nose in a phone, tablet, newspaper or book. They don’t look up and if they do, it’s to check they haven’t missed their stop. They’ll look through you, not at you.

Why don’t you just ask for a seat?

To be honest, it’s because i‘m not brave enough. Asking for a seat draws attention. Asking for a seat means waking someone up or inconveniencing them. It’s awkward, feels embarrassing (for me), and i’d rather just wait for the next stop and hope people get off. Quite often i’ll have spent the day limping around but even then, I will never ask for a seat. One day i’ll shrug the insecurities off my shoulders, but i’m not there yet and that’s okay.

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Transport For London, London’s travel authority, needs to do more for people with disabilities. They’ve improved vastly over the years but still there is a lot more that can be done. People are becoming more aware that not every disability is visible. On a good day, with the right trousers, you’d barely notice my leg however, I shouldn’t have to prove I have disability to be granted a seat from an able-bodied person. I enjoy wearing fashionable clothes. I have a piercing (very unique I know), I wear rings and necklaces, vintage jumpers and ‘edgy’ jackets. When people look at me taking a seat, when one is offered, I feel they often look ay my clothes and start to process whether they think I really need the seat or not. It can be a dangerous place to find yourself in as some days I catch myself passing judgement on those not offering me a seat too, looking at them in the same way others look at me. I get frustrated or angry when in reality they might need the seat more than I do!

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I’m sure most of the time it’s my own brain convincing me people are judging but sometimes you can just tell. Their eyes go to your badge. Then they look at your face. They’ll trace your body from head to toe, look at your badge and face again, then make their judgement. I have noticed people stare at me for entire journeys. Some stop caring after a minute. Others smile sympathetically. Either way, it’s exhausting. Constantly I prepare what I am going to say when someone stops to ask me why I have the badge. Just the other day some asked where they can get one. I have no idea if they needed one or not, but the way they laughed made me think not.

Commuting at rush-hour really offers insight as to what people are really like. Some are very selfish and impatient, others are caring and aware. If you have a busy commute, or even if you don’t, I would encourage you to seek a badge or your city’s equivalent – if they have one that is. It’s been a real help for me and helps communicate to strangers a really quite complex subject. It does the talking for you and without it my leg would be a lot more swollen and my body a lot more tired.

You can get them from here: https://tfl.gov.uk/campaign/please-offer-me-a-seat

I think for the hundreds of tannoy announcements there should be at least one along the lines of keep an eye out for people with blue badges, pregnant women or those who struggle to stand. Remember, not every disability is visible. An announcement like this might encourage people facing downwards to look around for a second which would lighten the load on people with disabilities. It would remove the awkwardness of confrontation and help to spread awareness on different forms of disability.

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.

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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.

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Shopping with Lymphoedema

Shopping. A real marmite of a pastime. For some, it’s a joyous occasion filled with dummy catwalks, struts and selfies. For others, it’s a gauntlet sure to end in sweat, tears and pure, unadulterated boredom. There’s the people who try the clothes on – the shoppers, and the people who carry the clothes – the walking coat hangers. We’ve all been there and whether you think owning your look is fabulous or frightening it’s an inescapable part of life for near enough every one of us.

Personally, I like shopping. Sorry, I like shopping for me. I have never lacked confidence in walking into a high street store and picking out an armful of clothes that I think make me look “cool” (a near impossible task). However, over the years my experience of shopping has changed somewhat and that is largely down to lymphoedema.

Shopping for clothes involves a lot of standing around

Park the car, walk to the high street, get your bearings. Locate the shop you’re keen to visit, plan route accordingly. Enter shop, browse racks. Lose shopping partner, relocate shopping partner. Critique their choice, show them your finds. Agree you could find nicer/cheaper/more weather appropriate items elsewhere. Leave shop, locate next shop. Repeat X4. Go for lunch. Go back to first shop, try on items. Go to till. Purchase, leave, return to swap item. Grab coffee. Spot sale. Stand in thirty person queue all for a reduced bomber jacket even though it’s mid-July. Lose car.

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Shopping is tiring

Sound familiar? Thought so. Standing on your feet for hours at a time can be really sore when your legs are swollen with lymphoedema. By the end of the first hour I am usually waddling from seat to seat. If I am shopping with my girlfriend and we enter a women’s only clothing store I immediately head for the nearest stool. If there is no stool I sit on the floor like a child. If I am really brave, I will ask for the seat inside the waiting area of the changing rooms but that can sometimes attract strange looks.

Often I end up cutting short my girlfriend’s shopping time because I simply can’t last. If the words i’ll come back later leave her mouth I usually breathe a heavy sigh as I know I will probably be in considerable pain by the time later arrives. If I am tired and she holds up two options asking which I prefer, I am likely to pick the option that requires the least amount of trying on. Now this isn’t a major drama in our relationship, but I do feel if you are the nominated shopping partner you should do your bit – especially for your girlfriend. Especially for your girlfriend that supports you with your various lymphoedema-clothing related anxieties.

Trying on clothes is difficult

You know when it’s winter time and the inside of every building is hot like a furnace? Yeah. That. I dislike that a lot. Not only do you dehydrate but you sweat. Compression garments are not comfortable at the best of times and sweating only makes them more uncomfortable. Constantly taking clothes on and off drains your energy and after trying on one singular corduroy shirt (i’m edgy like that) i’ve usually had enough.

For a couple of years, until recently, I refused to wear shorts because I was either too embarrassed or because none fitted my leg right. In fact, I outrightly refused all cream shorts because paired with my beige compression garment I looked an old British colonial general – that’s not a look i’m down with. I could either wear fashionable shorts that cut the circulation to my leg or I could wear baggy shorts that screamed “world’s best dad”.

I mentioned earlier how nominated shopping partners should “do their bit”. I say this lightly and don’t mean you should carry bags around like a donkey, but more that you should offer some real advice or opinions to your shopping partner. I understand for some people this isn’t possible as they quite literally take the “able” out of fashionable but, if you’re like me, you appreciate people’s honesty.

My girlfriend fills me with confidence when it comes to clothing. I have two legs that take two different sizes. Finding trousers is a sensitive subject for me and if there is even a hint of discomfort they’re straight in the no pile. That’s why I appreciate it when she tells me that I look good or helps me to find a different fit. I’ve stopped wearing skinny jeans because they hurt too much and look ridiculous on me. I now go for looser fitting “tapered” trousers which give me more room around the knee.

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Tapered trousers from Uni Qlo

I have tried on countless pairs of trousers over the past few years. Most of them don’t work or don’t fit. That is possibly the most frustrating part of shopping with lymphoedema. You can walk into a shop, see all kinds of clothes you’d love to wear, but know almost immediately they won’t fit you correctly. Shoes are a real problem area too. I’ve seen countless lymphies struggle with shoes as you can’t buy them in a different size for each foot – if your lymphoedema is in one leg that is. You either have to walk in giant’s shoes or squeeze your feet in. Or, buy a pair you don’t like purely to avoid discomfort. I bought a pair of Dr Martins a while back. Quality shoes that can last me a life time. The only problem is I can’t break them in as they hurt too much – the leather literally cuts into my swollen ankle.

So, in summary, I still love to shop. However, there are burning issues around accessibility and fashion that need serious attention. Too many people of varying disabilities struggle to find and access clothes they love which seems like such a fixable problem if it was given time buy those abled/in power. I am blessed with a slim frame, but there are men (and women) who are forced into wearing clothes they hate as they simply have no alternative. In an upcoming blog I will give some examples of clothes which are kind on my lymphoedema but still look a bit more fashionable. Well, in my opinion at least.

Got any tips on shopping with lymphoedema? Let me hear them!

Travelling with Lymphoedema: East Asia

A few weeks back I returned from a four month escapade around Asia (queue crying emoticons and “take me back” Instagram posts). A few posts back, I described my experience of travelling around sunny (and also very rainy) South East Asia with lymphoedema. This post and the next will cover the second half our trip, in Far East Asia. “Our”, if you remember rightly, means Charlotte and I, and it’s important I mention Charlotte as my whole experience of travelling would be very different without her organised, caring and sometimes angrily pointing hands.

Tip: Always bring a Charlotte. Remember to provide with food and or wine.

Back in Singapore, my wonderful lymphoedema therapist recommended I detoured away from South East Asia as soon as possible due to my leg’s reaction to the weather. The heat had got to me and my stockings had started to lose their strength, so staying much longer than we did could have been disastrous.

Tip: Leave enough budget spare and don’t book anything too far in advance so you can change plans if needs be.

With that in mind, we decided to cull Laos and Cambodia from our list and decided to head to South Korea which was not only more expensive, but much, much colder.

Comparing the climates of South Korea and S.E. Asia is like comparing an ice-cube with a freshly grilled cheese sandwich. The weather dropped from 28°C to -13°C, we wore scarfs instead of swim-shorts, and we trudged through sparkling snow instead of soft, white sand. The entire contents of our rucksacks were abandoned but thankfully, due to our timely location of Hoi An, we were able to purchase faux North Face jackets, fleeces and socks before we left.

Off we flew across the East China Sea and after five hours or so, we arrived in Seoul. So, what should you expect if you’re visiting South Korea?

South Korea

Firstly, it’s amazing. Alongside a fascinating history, a huge fashion scene and a booming economy, the South Koreans also have the fastest internet speed in the world, a diverse art scene and a tasty although somewhat bizarre cuisine. Their people are proud, very friendly and incredibly polite and will always engage you in conversation or point you in the right direction – even when you show no signs of being lost!

We stayed in a mixture of homestays, Air B&Bs, hostels, traditional Korean homes known as Hanoks and on one special occasion we even stayed the night in a temple with Buddhist nuns. In most buildings across SK the floors are heated and in more traditional households, the people sleep on the floor. To be fair, it is very cosy down there, especially when the snow outside is up to your waistline.

Early in the trip, we visited the Korean demilitarised zone which was a terrifying and humbling experience. We watched Black Panther with the locals in Busan, experienced our first ever VR café in Seoul and were even lucky enough to get tickets to the Winter Olympics.

If you would like any tips on things to see, do and eat in South Korea just drop me a message – I would love to share!

Travelling with Lymphoedema around South Korea

As I mentioned earlier, the change in temperature was a real shock to the system. We didn’t realise quite how cold it was until we stepped off the plane where a bitter breeze slapped us across our tanned freckly cheeks.

The circulation in my swollen leg was poor which meant acclimatising to the cold was difficult. Extremes are never good for lymphoedema, and I learned this within the first few days of our arrival. Where the lymph had gathered, most noticeably in my thigh, the limb turned extremely cold. It felt like I was walking around with a block of ice at times making it tough to walk and very uncomfortable to sit down. With icy pavements, this became even harder so I would recommend you purchase a good, fitted pair of walking boots that allow plenty of room in case of swelling. Charlotte and I also purchased plenty of hand warmers that I rubbed on my legs after lengthy spells outside.

Tip: Head to the high street store Uni Qlo (a global brand) where you can purchase thin but effective thermal trousers, vests and jumpers.

An impressive feature of Seoul is their newly built subway system. The stations sound a charming alarm before the super spacious trains with heated seats arrive. The carriages are air-conned and the locals tend to resist occupying any seating allocated for the disabled, pregnant or elderly. It seemed like a social faux par as far as we could tell. I got quite a few stares mind, but I didn’t particularly care as my leg hurt too much.

Tip: Purchase a T-money card which is a travel card accepted on most trains, buses and certain brands of taxi. It’ll save you a lot of standing around!

We also visited the national museum while in Seoul and the free tour in particular I would highly recommend. We had a great time learning about the Korean language, traditions and history but the most noticeable part for me was the museums accessibility. Wheelchairs were free to use and could be found next to a big sign making visitors aware of their existence. I wheeled myself round, careful not to knock over any ancients jars, and was able to enjoy the tour much easier without straining my already tired leg.

Over 40% of South Korea’s population lives in Seoul. It’s the place to be and it’s not hard to see why. What that does mean however, is that the rest of the country doesn’t offer quite the same experience as the capital. Don’t expect the same transport or accessibility everywhere you go and be aware that the locals rarely speak English or any other language for that matter. Plan your day in advance to avoid long waits, getting lost or any other unwanted experiences!

Have you tried kimchi? The pickled cabbage is the latest craze to hit the UK but personally I’m not sure what all the fuss is about (sorry guys). Bibimbap however really is delicious, nutritious and very filling! When visiting SK, don’t expect to recognise any of the food you see. Overall, they have a big emphasis on healthy side dishes which are quite bold in flavour. They do enjoy their fast food however and a favourite meal, especially amongst students, is fried chicken and beer. Not the best thing for lymphoedema, but certainly delicious.

Surprisingly, I became dehydrated more often in the cold than I did in the warm. The bitter weather tricks you into thinking you have consumed fluids and because you don’t sweat as much, you don’t tend to reach for your bottle every five minutes. Keep that in mind as dehydration will slow you down and worsen your lymphoedema.

Until next time, SK

For us, South Korea was unforgettable. In fact, across our whole trip Seoul took the prize for favourite city which really says a lot considering some of the incredible places we visited.

The country is blessed with proper seasons meaning if you go in the summer period you’ll likely experience extreme heat compared to our extreme cold. However, if you do decide to go in the winter, remember to wrap up snuggly, bring plenty of hand warmers and purchase a flask on arrival!

In my next post I will cover our incredible journey across Japan – stay tuned!

Haikus for Lymphoedema

Today marks the start of Lymphoedema Awareness Week (March 4th – 10th) and since I am currently in Osaka, Japan, I thought I’d recognise the occasion with a local form of poetry called ‘haiku’.

I know, how very cultured of me.

The idea of these short poems is to give a brief window into what life with lymphoedema might look like. They are merely my thoughts and interpretations of the condition, some personal and some observational.

 

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Photography by Maria Molinero, Unsplash

 

Please give up my seat?

Hidden underneath my clothes

I can barely stand

 

Lymphoedema is often a discreet condition. It can be hard to talk openly about it, especially in public.

 

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Photography by Pan Xiaozhen, Unsplash

 

One leg like a tree

The other thin, like a twig

My skin rough like bark

 

For me, one leg is double the size of the other. Without regular skin care my skin turns rough and sore. For many, both legs and arms are swollen with lymphoedema. For others, the swelling can be in their neck, hips, stomachs, genitals and just about anywhere across the body.

 

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Photography by Pablo Heimplatz, Unsplash

 

First, it was cancer

Then, my arms started to swell

What’s happening to me?

 

Lymphoedema is an unfortunate consequence of cancer, in particular breast cancer. After a hellacious cancer cycle, many patients are forced into managing a permanent condition they’ve never even heard of.

 

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Photography by Leio Mclaren, Unsplash

 

Way up in the sky

Soaring above the ocean

My leg starts to swell

 

Flying makes for an uncomfortable experience for those with lymphoedema. The pressure causes all sorts of problems.

 

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Photography by Derek Huang, Unsplash

 

Compression garments

Take a long time to put on

Stop us from swelling

 

Our compression garments often receive strange looks. But, without them, we couldn’t function normally if at all. They are a little tiring however!

 

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Photography by Martha Dominguez, Unsplash

 

Something isn’t right

Itchy toes, a dark red foot

Back again I see

 

Cellulitis is a huge risk for those living with lymphoedema. After the first bout, your chance of the infection reoccurring increases by 80%. The skin infection can quickly become aggressive and septic as I experienced last summer.

 

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Photography by Fedrico Giampieri, Unsplash

 

What a lovely day

Not a single cloud in sight

Better stay in side

 

On warm days the heat can be problematic due to increased swelling. For some with lymphoedema, a day in doors is a safer option.

 

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Photography by John Jennings, Unsplash

 

Swollen, stretched and sore

All for a sip of white wine

Now it’s hard to walk

 

Alcohol causes our lymphatic channels to dilate causing us to swell almost instantaneously.

 

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Photography by Jennifer Burk, Unsplash

 

What’s the matter then?

I’ve put on a lot of weight

Do you exercise?

 

Due to a lack of understanding from medical professionals, many cases of lymphoedema are misdiagnosed as obesity. It’s time for that to change.

 

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Photography by Volkan Olmez, Unsplash

 

I understand now

What you might be going through

I think to myself

 

Having lymphoedema has opened my eyes to other people’s situations and suffering.

 

Have you got lymphoedema or any other medical condition? Why not try writing a few haikus yourself? It’s fun and cathartic, and a great way to communicate your emotions and experiences. You can see how to write a haiku here.

Lymphoedema: Swelling, Signals & Spectrums

Lymphoedema confuses me.

For years it has baffled medical professionals, so I think it’s only fair that I also struggle to grasp it. Just when I think I’ve got it all figured out, when I am convinced all is well, and just as I smile with confidence that I won’t let my condition define me, my leg says “no Josh, back in your box”.

Not literally of course that would be ridiculous. Although, I do find myself talking to my leg as if it could feel emotion. Feeling sorry for it if I get frustrated or blaming it after a bad leg day. Bizarre that.

Lymphoedema is incredibly sensitive. Too much of this or that and it’s time to rest. “This” being anything and “that” being almost everything. Diet, exercise, sleep, stress, posture, commute, sun exposure – you name it, lymphoedema loves and loathes it.

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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.