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.

Read More

Travelling with Lymphoedema: South East Asia

Note: S.E.A = South East Asia

In my last post I described my experience of travelling across Indonesia with lymphoedema. The plan was to do this for every country I visited, but, when I finished writing the Malaysia edition, I realised it was all a bit “samey”. That’s not to say the day-to-day experiences of each country were the same, but rather how my lymphoedema responded to the environment was similar.

That’s why I’ve decided to write one mothership post, detailing what one can expect if they were to embark on an adventure across South East Asia. I will then do the same for East Asia which currently has a very different climate (it’s snowy here, minus ten and I am freezing my a*se off).

So, South East Asia. Big place, absolutely manic and certainly not the most welcoming of environments for lymphoedema, especially for those with the intention of backpacking. Take one minute to study the dangers of travelling here (with lymphoedema) and you might think it was a no-go, risk-ridden mass of land almost certain to hand you a healthy dose of cellulitis. On paper it is, but, with a bit of caution and some common sense it can be scaled, explored and enjoyed like any other part of the world… Well, nearly.

I spent roughly two and a half months in South East Asia, starting in Indonesia and passing through Malaysia, Singapore, and Thailand, with Vietnam concluding our stay.

It’s a fantastic part of the world which bursts with tradition, colour, history, flavour and the friendliest people you will likely ever come across. There is a stark difference between every nation, especially when you consider the modern capitalist powerhouse that is Singapore compared to say, communist Vietnam. However, every single one of these countries shares typically Asian characteristics, some of which lend themselves kindly to travelling with lymphoedema, some of which do not.

I’ll break these down for you and offer some tips whilst I’m at it:

Weather

In most of South East Asia they have a variety of seasons. In fact, the seasons differ from region to region within the same country! In the rainy season you will experience reoccurring biblical downpour which will leave you soaked head to toe. Miniature streams will form all around you and all but the brave (the locals selling ponchos) flee inwards. The good thing is the rain reduces the temperature slightly giving you a temporary break from the scorching heat.

However, I found at times my lymphoedema (left leg) was not too appreciative of the wet. My feet got drenched meaning I was regularly drying myself off and applying aloe gel between my toes – a real problem area for me. Litter and waste also moved with the wet, allowing polluted puddles to punctuate the streets. Not an issue if you’re careful, big issue if you misstep. Either side of the rain however came plenty of glorious sunshine.

Temperatures hit the thirties in Malaysia. The lowest temperature we experienced was around 18 degrees in Vietnam. If you could see both Charlotte and I before we left, you’d have thought us ill. Pale we were and prone to burning too, but after enough time soaking up the rich vitamin D we began to tan. But, as wonderful as the heat was, it didn’t take long before it had its way with my leg. I swelled like a balloon at times. The sticky heat wasn’t too comfortable either making my stocking a chore to get on and off, with chafing a frequent problem.

Bring a cooling spray with you such as the menthol infused one Medi supply. Rub it on your problem area and your stockings too. It’s not going to cool you down entirely but it helps nonetheless. Make sure you perform massage twice every day when you can, it goes a long way into relieving a heavy limb after a long day in the heat.

Relevant to: All countries.

Hygiene

In many parts of S.E.A sanitation is lacking somewhat. Some call it unhygienic, some call it relaxed. In tourist or popular spots you tend to be fine. In lesser known, more rural areas you might (definitely) need to bring hand sanitiser and toilet roll. It’s all a part of the backpacking experience I guess, but, bear in mind with lymphoedema there needs to be a certain amount of consideration. I.e. are you particularly prone to illness – especially cellulitis? Expect sneezing with no cover, spitting from the locals (especially elderly folk), stray dogs and cats (in restaurants and homestays).

Relevant to: all countries apart from Singapore.

Religion

The religions of S.E.A are an integral part of its cultural makeup. With Islam, Hinduism, Buddhism and Christianity making up the major sects, you won’t go a day without stumbling across a beautiful place of worship.

Buddhist temples of shimmering gold; stunning geometric patterns which characterise traditional Muslim mosques; Hindu temples decorated with more colour than a rainbow – it will leave you speechless. With these holy grounds come one common trait – the removal of your shoes. After a while it does become frustrating, but if you want to see inside these stunning religious buildings it’s the price you need to pay. Keep an eye on the floor as although some places claim to enforce it, they definitely don’t. If the floor looks mucky consider giving it a miss. I brought spare socks with me that I could put on when necessary.

Relevant to: all countries.

Environment

Okay, it makes sense to start with hostels and homestays as they form your basecamp. Most have a shoes off policy which, although understandable, is annoying as unlike areas of worship, hostels and homestays tend to be dirty, well comparatively (especially in the bathroom). It’s not hard to find somewhere cheap and clean however, just do your research and always read the reviews as pictures are often misleading!

A typical trait of S.E.A culture is the famous squatting toilet. Although supposedly the correct position for adhering nature’s call, it does put a strain on your legs. It is definitely not the place you want to slip over in either.

Holes the size of wells line the streets in most of S.E.A sparing only Singapore. Health and safety isn’t too strict in these parts and it is not uncommon for broken windows, fences and railing to be left as they are, exposed to those passing by.

I adore beaches. Especially tropical ones with white sand and sparkling turquoise water. I had yet to experience sand with my lymphoedema as all previous holidays since my diagnosis had been city breaks. The sand gets EVERYWHERE. Your stocking will retain the grains for days to come and can make things a little sore. Bring plasters and aloe gel in your bag, and maybe a spare stocking just in case.

Insects really weren’t too much of a problem for me, even when I did get bitten I was tentative and always kept a close eye on my bites. I sprayed myself with the bug repellent, Deet, daily. Be warned however, it is very strong so if you have particularly sensitive skin try a herbal equivalent which will usually contain lemon and eucalyptus. I kept my legs covered with soft baggy traveller pants which also kept my legs cool.

Relevant to: all countries.

Commuting

Alongside the heat, commuting has caused me a lot of pain throughout my travels. I would advise to always spend extra to get the best seats, but be aware the etiquette is different. Just because your coach ticket says “seat 1B” means nothing. If you ask politely people tend to move over, but this is no guarantee.

All lymphies know the complications with flying. Wear your stocking, keep moving around, book your seats in advance and ask for assistance at the airport.

Trains have perhaps been the biggest cause of grief for me. In the UK, disability awareness tends to be quite good but only when your condition is overtly present. It is not too dissimilar in S.E.A. The people are extraordinarily kind and will make way for those in need e.g. a pregnant or elderly person. However, I received a lot of stares for taking seats when my leg was in pain and I had no way of communicating my condition. You’ll be up and down like a yoyo, walking stop to stop, platform to platform. It does take its toll eventually. Don’t be a hero, take regular pit stops when your body has had enough.

Download the app Grab (Asian equivalent of Uber). It’s a cheap and easy way to commute around. If you are able, hire a bicycle – it’s even cheaper, good for pumping your leg and a great way to see the sights!

Relevant to: all countries, especially the cities of Bangkok and Kuala Lumpur.

Diet

You’ll need some time to adapt to the food which IS delicious but considerably spicy. I tried my best to taste as much as I could, but some things just didn’t agree with my palate. Two words: chicken feet.

Excuse me in advance for not softening the delivery of this next sentence. You will likely spend a lot of time on the toilet while you adjust to the S.E.A cuisine. It’s really important that you stay hydrated during this integration period as you will lose hella’ bodily fluids which does no favours for lymphoedema.

We have ADORED the food in every country. The difference in taste between each region is distinct, delicious and delightfully satisfying. In Indonesia it was not hard to stay healthy due to the vast amount of cheap fruit. I drank a coconut daily as a minimum. The rest of S.E.A has a real, and I mean really real, taste for chicken, pork and of course, rice. In fact, at times it was hard to get our hands on veg and we had to head to more westernised “health bars” to get our nutrition up. Most of your diet will consist of meat and carbs which aren’t the best options for keeping your lymphoedema in check.

Try to load up on fruit and veg in markets, but be careful not take anything pre-chopped as you won’t know how clean the utensils are.

Finishing note

South East Asia is wonderful place. Friendly, beautiful people, amazing food, stunning sights and never a dull moment.

When travelling this region with lymphoedema you just need to be aware of a few things and bring the appropriate gear to combat any issues (see a condensed, more concise list of travelling tips here). I brought a spare sum on of money which could only be touched in case of emergency and that pot soon ran out. Emergency flights, expensive coaches and above average accommodation for bad leg days – you’ll be surprised at how often you need to a rearrange.

Know your limits, know your body and come ready with a day-to-day plan. You will experience down days forcing you to cancel, rethink and rest, but in doing so you will have the energy to keep on going!

If you have any questions that I might have missed please fire away in the comments section!

You can keep up to date with my travels on Instagram @leftlegfirst_travel

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.

My Lymphoedema Appointment in Singapore

In this blog I describe my experience of treatment in Singapore. I also share some tips I learned along the way. If you wish to skip to the tips, jump about half-way down the page to the section titled “Tips from Veronica”.

Amidst the chaos of Mt. Agung’s “imminent” eruption (it still hasn’t erupted), our flight to Singapore was cancelled. As tourists relaxed on the sandy beaches of Indonesia’s glorious coastlines, the volcano exhaled a giant puff of ash and with its molten breath the airlines stopped all flights in and out of Bali. Luckily for us, my gut instinct kicked in (superhero Josh to the rescue) the day before meaning we got away just in time. Instead we headed straight to Malaysia, although a couple of weeks later we would find ourselves in Singapore anyway having the most wonderful time.

At a later date I will share my day-to-day experiences of the various countries I’ve visited over the course of my travels however, for this post in particular, I would like to focus on the treatment I received for my leg in Singapore.

The Masso Institute, Singapore.

Before we left the UK I posted about my upcoming travels on a lymphoedema support group. Someone kindly dropped me a tip about the Masso Institute in Singapore and said to check them out should I need treatment. It’s just about the only place in South East Asia to receive lymphoedema care, so, if you’re ever in that part of the world make sure to keep them in ­mind.

The clinic, run by a lady called Veronica, is quite small and unsuspecting, sitting in a sort of student shopping mall (when you see it you’ll know what I mean). It’s clean and cool, and the relief of knowing you’re in good hands (note the non-intended pun) settles across your body the moment you walk in.

Reassuringly I was asked to fill in a medical form and soon after I made my way into a treatment room where an assistant measured my legs. The results weren’t great as Veronica made very clear and with a teacher-esque authority, she began to interrogate me as to why I had allowed my leg to become so fibrotic. Before the appointment I thought I was doing quite well, but, after an hour or so with Veronica, let’s just say the standards of self-care I had set myself increased somewhat.

I had been meandering around Singapore with a solid, heavy leg during the days leading to my appointment. In all fairness I had been hiking in Malaysia so I think I was still recovering from that! Needless to say the leg wasn’t too comfortable, and when I showed Veronica my stockings and demonstrated my usual exercises she responded with this…

“That won’t do a thing, you might as well have nothing”.

You see, my then compression garment was not up to the job. It was old, unfitted and not strong enough. My leg was far more swollen than before I left the UK (due to various factors) and so wearing my usual garment was fruitless. Same with the exercises. The pressure I was applying was too light, it needed more force. Luckily for me Veronica had a new, much tighter garment lying around in my size, as well as a few tips for the road.

She put me in the pump which was just what I needed. I had never been in one that wrapped around my torso as well as my legs before. It squeezed me so tight I felt light headed!

The appointment was fantastic. I learned so much about treating lymphoedema in my short time at Masso. Veronica is extremely knowledgeable on the subject and a skilled therapist too. Let me take you through some of the bits I learned along the way…

Tips from Veronica

Swimming pools: Now then, most of us know that a dip in the water is great for treating lymphoedema. Swimming is wonderful, but actually hydro-walking is the best exercise for us lymphies. The pressure of the water in the depths of the pool stimulates our lymph flow, forcing the lymph up from your feet. Not only that, the pool is nice and cold making it an ideal counter to intense, hot weather.

Tip: When backpacking try and find a hostel close to the sea. If you can’t, find an apartment block or hostel with a pool. I would tend to pick an apartment over a hostel for hygiene reasons. We found this place for £30 a night:

Ice-packs: Now, in the extremes ice isn’t great for us lymphies. But, in small doses, ice can provide a really easy way for quick relief. Some of the more popular backpacking destinations involve braving hot climates which can make things unbearable for those with lymphoedema. If you purchase yourself an ice-pack, you can put in your hostel/apartment freezer and cool your leg down in moments of need. Wrap the pack in a tea-towel and stroke up your leg gently. Don’t put the pack straight on your limb or it will be too cold for your lymphoedema.

Tip: Don’t worry, if you forget an ice-pack, just buy an ice-tray and empty the ice into a plastic bag and tie it up.

Get a shift on: Contrary to the former consensus amongst lymphoedema therapists, to shift lymph, in particular fibrosis, one needs to be firm when performing self-massage. Stroking a fibrotic limb will not do anything as I found out. Use the edge of your hand, and pull down your limb (towards your groin or pit) with enough force to really feel it (not too hard though!).

Tip: Purchase a massage tool like the one pictured below. I picked mine up for 20p in a Thai market. It makes things a little easier and is small enough to fit in your rucksack.

Essential oils: If, like me, you are an advocate of herbal remedies then this one is for you. Using a combination of essential oils, including frankincense and myrrh (shout out to the wise men), Veronica has created a formula that prevents cellulitis. In fact, after testing it for nine years, not one of her patients had a bout of cellulitis.

It wouldn’t be fair for me to list the ingredients, so if you wish to get your hands on her formula, please get in contact with her directly through the Masso Institute website.

It was a real pleasure to meet Veronica. If ever I should be back in that part of the world, I would gladly pay the Masso Institute another visit, not only for treatment, but to see a new friend too.

Visit the Masso Institute at www.massoinstitute.com

Been to any other lymphoedema clinics in Asia? Let me know!

What does Lymphoedema look like across the world?

I was born and raised in the South East of the UK just outside of London in a sleepy village called Prestwood. In my university days in Southampton, I would leave for the semester and come back home a few months later to find that nothing had changed. Mum might have reorganised the entire kitchen (every year without fail) and Dad might have sprouted a few more ear hairs. But, other than that, not much seemed to happen in our neck of the woods.

When I was diagnosed with lymphoedema my life changed somewhat. I’m still heading in the same direction, only now I have new challenges and different priorities. It was my last Christmas in Southampton and the following summer I would be heading home again.

It’s safe to say that in Prestwood, lymphoedema was not the talk of the town. I had no one to chat with, not even my doctor, and so the condition soon became very isolating. I swept it under the rug and rarely brought it into conversation, unless, of course, someone spotted that one of my legs dwarfs the other.

I didn’t even wear my compression stockings as I wasn’t aware of the risks. “Hey! I’m young… there’s no way one swollen leg will keep me down” I would think, and it didn’t. Until June of 2017 where I was brought back to reality by cellulitis, but that’s a different story.

Post cellulitis, my lymphoedema network grew somewhat. I’ve met therapists and doctors, and connected with other lymphies who, just through documenting their experience of lymphoedema online, have expanded my thinking towards the condition.

However, irrespective of this global community, those from the UK with lymphoedema still lack the support they should be receiving considering the severity of the condition. We are blessed with a superb NHS which sadly, in recent years, has been suffocated by politics meaning lymphoedema does not get the attention it deserves. Primary patients will struggle to access a community who understand the condition and, upon diagnosis, there’s no standardised route of care.

For me, post diagnosis felt like being dropped off at the gates on the first day of school, not knowing where to turn, with a complimentary ‘off you go’ thrown in for good measure. I found it hard to explain to my friends, family and colleagues what lymphoedema was, why I had it, and what on earth I was going to do about it. The condition is not in the spotlight. In fact, lymphoedema is only beginning to gain exposure in the medical world due to its relationship with cancer.

It doesn’t come cheap either. Therapists, bandages, pumps, compression garments, the list goes on. There’s no way around it – either find the money, or swell. Lymphoedema has no bias – It doesn’t pick you based on your habits. Quite the opposite, it turns up unannounced as the result of trauma like a sports injury or cancer. Sometimes we inherit the condition and when it rears its ugly, complicated and swollen head it leaves the whole family guessing who carried the gene in the first place.

However, in spite of all this, the UK remains a world leader in health care. Lymphoedema might be low down on the list but compared with most of the world, the condition is manageable as support is there (you just need to dig) and our natural and social climate lends itself kindly to those suffering with it. By this I mean it’s cooler in the UK than in many countries, and as a result we have less disease. Although socially you will still face jeers and discrimination, you are likely to fare better in this part of the world where, due to an arguably more “progressive” society, there might be more understanding.

But of course, this is just one opinion of a twenty-four year sat in a hostel somewhere in Bangkok. I often find myself comparing my struggle (it’s not always a struggle mind) with other peoples. How do other Brits cope? Is the “lymphie life” too expensive, unmanageable or inaccessible? More poignantly, how do those suffering with lymphoedema cope in parts of the world where healthcare isn’t as easily accessed? It’s an important conversation to be had as there is not one country that won’t feel the effects of lymphoedema, whether that be primary or secondary.

So, if you are reading this I would love to hear your experience of lymphoedema and how it’s defined by where you live and who you are. It’s a sensitive topic, but the more we talk about it openly, the more exposure and support we can give one another.

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.

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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.