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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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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