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.

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