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.

Part 5: Itchy Feet

This is Part 5 of my fight with cellulitis. In this post, I explore the frustrations of life after cellulitis. If you wish to read Part 4: The Flood, you can do so here.

The floor of the ward was wet. Really wet. The water, which had reached my bed and soaked my clothes, was now creeping towards the corridor.

After I had crawled into bed, a nurse marched into the room to find Charlotte on her hands and knees cleaning the floor. Evidently confused, she tried to piece together how the situation had arisen. A raised eyebrow from Charlotte and my refusal to make eye contact was enough evidence to suggest that it was I behind the waterlogged circumstance we had all found ourselves in.

Eventually, the floor dried. My temperature was taken and blood pressure checked. My infection rate was dropping and slowly, my leg was whitening.

That’s when it started.

I need you to think of the last time you were bitten by an insect. Just imagine the red dot with the white circle. The relentless oozing, itching and scratching: a daily reminder of your hatred for mosquitos, midges and other such creatures.

Now take that sensation and multiply it by one thousand. That was the itchiness my leg felt as it started to heal from the cellulitis and regenerate every tiny skin cell.

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Beautiful, right?

The itchy tickle never seemed to stop. Just writing this is making me scratch my leg. The worst part? I couldn’t touch it. Well I could, but just a gentle stroke. Nothing on the satisfaction of a good ole’ scratch. Again, morphine came to my rescue as it numbed the feeling in my leg. I also applied cream every couple of hours or so, which provided some relief.

This lasted for a couple of days but eventually, it calmed down and the skin on my leg was back to its usual, pasty and somewhat freckly self.

I was given the all clear and sent on my way. Standing up still hurt with every attempt and my leg would still turn a bluish-purple each time. But, irrespective of the pain, I was glad to be out.

As a goody bag, the pharmacist prescribed me the biggest bag of drugs I have ever seen. It was similar to a bag of liquorice all-sorts – equally disgusting, but far better for me. Inside, there was an eclectic mix of painkillers, inhalers, creams, gels and antibiotics. Sorted.

Upon leaving, the best tip I was given by the doctor was to cream my leg twice a day. I have done so till this day (around 4 months later) and my leg is looking much better. As she explained to me, your skin becomes incredibly weak with lymphoedema. Applying cream just gives your skin wall the strength to defend against future breakages and infections.

We left the hospital and headed straight for a taxi just opposite. It was hot outside and the streets of Bristol were full of people going about their days.

It’s odd. When you leave hospital after nine days, it feels like the world should have changed. It hasn’t, but you have, and for some reason it felt like everyone I passed would know it. They didn’t.

It was our last day in Bristol. Charlotte had spent her final week of university looking after me, so we decided to go for one last celebratory meal at an Italian restaurant called Pasta Loco. If you have the chance to go there you will not be disappointed – the food is simply incredible. I washed my antibiotics down with a glass of white wine, a natural pairing of course.

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This certainly beat hospital food.

From there, Dad picked us up and we headed back home to Buckinghamshire. It was over. No more Patient X, hospital food or late nights. No more wailing elderly folk, Dr Sophie or injections. The whole ordeal had finished.

Before I knew it, I was sat on my sofa at home watching television. It was a relief to be back amongst my family, friends and my dog, Luna. I rested for a day or so and even managed the trip to Wales, which thanks to the cellulitis, was almost destined to never happen. My friends looked after both Charlotte and I for the weekend, cooking, cleaning and entertaining. I didn’t have to lift a finger and I could enjoy the fresh air.

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Beautiful Wales was just what I needed

A few days passed and again I was on that same sofa, leg raised. My friends went back to work and it didn’t take long before I got bored. I couldn’t really walk, I definitely couldn’t drive and usually, I could only stay awake for a few hours at a time.

When you have lymphoedema, cellulitis can make the fluid go rock solid. This is called “fibrosis”. To me, the density feels much like leather padding. It really doesn’t give and is very uncomfortable. The trouble is without proper treatment that fluid isn’t budging. In fact, over time it just gets harder and more painful.

The fibrosis was immobilising my ability to do anything. As you can imagine, this quickly turned my restfulness into restlessness, riddling my recovery with frustration. The sofa sessions lasted a few weeks. I would sit and ponder what on earth I was going to do with my life. It might sound dramatic, but the damage my leg had taken hugely limited my opportunities.

No standing for too long. No sitting for too long. No heat, no cold. Less alcohol more water. Commuting was off-limits. Forget driving or long train journeys and don’t even consider flying. Festivals were a no-go. Be wary of insect bites and don’t stay in the sun for too long. Careful what you eat. Watch what you wear.

The list goes on and on.

So, what was I going to do with my life? I had always wanted to travel and see the world, to soak in the culture of places I never knew existed. Backpacking was the next thing on my to-do list, but with each passing leg-raised day, that ambition slowly faded. The candle had been blown out and a fear started to consume me.

But, just as the colour in my life started to turn grey, my mum handed me her phone. On the other end was a lymphoedema therapist. She was very kind, understanding and convinced me to pay her visit.

If it weren’t for mum, that phone conversation never would have happened. It was her research that led to the call, and it was seeing this therapist that got me back on my feet again.

In my next blog, I will take you through my recovery and the life-changing advice I received from an incredible therapist by the name of Carmel.

Part 4: The Flood

This blog is Part 4 of my hospital experience during my fight with cellulitis. If you’d like to read Part 3, you can do so here.

I was sat in a clunky, brown wheelchair staring out of a window that looked over the city of Bristol. The sun was setting and a pinkish-orange hue hovered on the skyline. It looked warm outside and as I gazed outwards, I couldn’t help but wander if I’d get a chance to experience the heat before it inevitably turned cold again (Brits will know the feeling).

It was cooler in the new ward, more modern too. There were fewer beds; more staff and everything felt cleaner.

During my stay in hospital I had a few visitors: friends, family friends and family. Charlotte wasn’t so much a visitor, but more of a stand in nurse. When visiting hours were over, she was allowed to stay. It was Charlotte who made my bed and helped me go to the toilet. She fed me, washed me and entertained me. It didn’t take long for the staff to realise that she was relieving them of certain duties, which meant they could focus their efforts elsewhere. I think they enjoyed her company as much as I did!

By this point I had pain everywhere in my body. The infection made me twitch and spasm uncontrollably and my leg was blistered from heel to thigh. The remedy? Liquid morphine. I took it on the hour, every hour. It was such a relief, although, it did inspire some strange, vivid dreams involving lions, my friends, and Ikea furniture.

Don’t even ask.

 

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The blisters were nasty

 

After one night’s stay in the new ward I was given the option to have my very own en-suite. I gleefully accepted the offer and moments later; I was wheeled down the corridor. Usually private rooms are only for patients that are contagious so germs can be contained and kept at bay, but in my case, it was because I was easier to look after than other patients. They could herd everyone else together and leave me to it. As you can guess, I very much enjoyed the solitude. Or so I thought.

My parents, sister and some friends of the family had just visited. We laughed and shared stories for an hour or so but eventually, it was time for everyone to leave – they had dinner plans for Mum’s birthday. As my Dad left he asked, “Are you going to be alright?” to which I smiled and nodded. They headed off and shut the door behind them. I was alone.

The next three hours were horrible. As I stared at the ceiling it dawned on me that we still had no answers from the doctors. Why wasn’t my body fighting back? The claustrophobic room was small and bleak. I was afraid, lost and had no one to turn to.

The following morning I was back with Charlotte. A nurse entered the room, quizzed me on my stools, and swiftly left. It was a rollercoaster start to the day. A short while passed and my family returned. I told them of the previous nights struggle and as they sought to comfort me, a brigade of doctors suddenly marched in. There were three of them: two doctors and one consultant. They looked very serious, almost mob-like and seemed to tower over me. Arms folded and pens on ears, they fired questions back and fourth between themselves in military fashion until eventually, they revealed some news to me. I was on the mend. My infection rate was dropping and finally I was turning a corner. The double dosage of antibiotics was working.

I sat back in the bed and just smiled. I have never felt such relief as I did in that moment.

 

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My sister, Jess

 

Later on I asked Charlotte to put some music on. It had been over a week since I had heard something other than hospital alarms and people groaning. We looked through photos on my laptop and as the music played I started to cry. It’s the little things you appreciate when everything is hanging by a thread.

Because my leg was beginning to heal, the en-suite room was reallocated to patients in greater need so I went back to my previous spot. With a new lease of life I attempted to shower on my own. Because the cellulitis started in my toes, I had to keep my left foot on a basin to avoid contact with the floor. I was loving every minute in the shower, but it wasn’t till I had finished that I realised the water had gone beyond the curtain. I pulled it back and to my horror the water had reached the door of the bathroom. In a panic I hobbled to the door and when I opened it, my jaw dropped. I had flooded the entire ward.

There wasn’t a nurse in sight. I looked around the ward and sat on a bed was an old man with his arms wrapped around his knees. Terrified for his life he proceeded to wail, calling for help as best he could. Alas the help never came and he was left stranded on an island of bedding. The water headed for every corner of the room until thankfully, Charlotte entered the room to prevent certain chaos.

I got into bed with a sheepish smile. It’s not everyday you flood a ward.

Part 3: Peaks & Troughs

This blog is Part 3 of my hospital experience during my fight with cellulitis. If you’d like to read Part 2, you can do so here.

Apparently, the most appropriate way to treat the people looking after you is to insult them. I’ve heard that supposedly, women love a bad boy, but I’m not sure medical professionals appreciate racism. Or sexism for that matter. In fact, I’m not sure “isms” of this ilk are particularly welcome anywhere nowadays. But maybe that’s just me?

I was lying in bed trying to time my breathing with the hum of the fan. It was late in the night and for the fourth day running, I couldn’t sleep. Every nurse had their hands full, the alarms were drilling, and there was only the one bed spare. It stayed liked this for hours, but as the ward began to simmer down a new arrival entered the scene.

Introducing Patient X. I couldn’t see him as a blue hospital curtain divided my view, but I could hear him. The yelling made it clear he was in a lot of pain and so a few nurses were needed to get him into bed. He was lowered using a crane like device and a loud breathing apparatus was fitted. I felt sorry for him.

This was a man who had clearly had a rough ride. I will not take that away from him, who am I to judge? But, I can only have so much sympathy for a person that made the collective experience for the entire ward a nightmare.

My sympathy didn’t last long. You see, although Patient X had a lot health issues, he also had a nasty streak. Over the coming hours I would learn just how nasty he could be.

One nurse was not to approach him with her hands on her hips, as he didn’t “need the attitude”. Her hands were only positioned like that because she was exhausted. It was late by this point. No one was in the mood for his attitude, least of all her. Yet she, with albeit a slightly forced smile, rearranged his pillows and poured his water.

Another nurse, he labelled as “that one” wasn’t “capable” of looking after him. This was the same nurse that had moments before wiped him down head to toe. I might add she was of Asian ethnicity.

He requested a fan as he was too hot. They took mine. I overheated. I was already overheated. I did not wish to be overheated. See where I’m going with this?

Each time he didn’t get the attention of the nurses, he repeatedly rang the alarm. This is exactly what you need when you’re trying to sleep. He would flail his arms and on two occasions he barged my table through the curtain and knocked everything over, including my water. What soaking good fun we were having together. He spilt a tiny bit of his own drink on his chest, but of course, this was the nurse’s fault. Why? I have no idea. But somehow it was, apparently.

Quite simply, hospital personnel are resilient, forgiving people made from much hardier stuff than I. Hours I spent watching them reflect insults, complaints and criticism. If they can do this daily, I can do it momentarily I thought to myself. Although, this was easier said than done.

After a few hours of lying next to him I was ready to make a run for it – all I needed was a new leg. Oddly enough, this was a discussion my mother and I ended up having. The infection was so bad and showed no sign of slowing down. At regular intervals I would stare at the red boundaries of the infection, praying that the cellulitis wasn’t spreading pass the pen markings. If it did, the infection might reach my vital organs, which could be fatal.

During one of his finer moments, Patient X told a woman who was on her hands and knees picking up a bag of his spilt crisps, that she looked good on the floor. As she stood up and brushed her knees off, he asked “Who are you?” to which she replied, “I am your doctor”. He fell silent.

This was Dr Sophie. She wasn’t much older than thirty and had intense eyes that seemed to carry the emotion of the whole ward in them. When she spoke, you listened. Daily she would visit me, shut the curtains and perch on the end of my bed, clipboard in hand. There was never good news it seemed, but somehow it was less of a blow when she delivered it.

When I first arrived, I was set to leave the following morning. By the end of day two, I needed three days in total. By the end of day three it was four days, and by the end of day four they gave up on telling me when I would be out. I kept my chin up as best as could. Dr Sophie had the fun job of repeatedly telling me to cancel the next day’s plan.

Mum’s 60th? Nope. Spa day? Nada. Paris? Definitely not. I hadn’t even told her about the planned trip to Wales, but you can guess what her advice was when I did. Each bit of bad news chipped away at me. By the time I had messaged my friends saying Wales was off, I had given up the positive act. I was in tears.

Dr Sophie decided the best thing for me was to up my antibiotics. I now took them orally as well as intravenously (directly into the blood via a drip). I was one big sack of antibiotics. I took the oral form four times a day and had about three different painkillers every hour or so.

Night time arrived again and just like the nights that came before it, I did not sleep. That was it. I’d had enough. The next day I was going to complain (I am typically awkward and don’t like doing this). The next morning I told Dr Sophie that a certain neighbour of mine was going to give me an emotional breakdown, that the ward was too hot, and that I was fed up of being surrounded by veterans. After a while, the charm of their twinkly eyes and grey hair vanished, and the constant groans one can only associate with an old person began to age me. I was becoming one of them.

She nodded, smiled sympathetically and said, “I’ll see what I can do”. She soon returned with the first bit of good news I had heard all week. I was moving up stairs to the new wards. Goodbye Patient X. Farewell old timers.

I felt better already.

Part 2: Death’s Corridor

This blog is Part 2 of my hospital experience during my fight with cellulitis. If you’d like to read Part 1, you can do so here.

June of 2017 was unbelievably hot, or so I was told. I didn’t get to experience the Mediterranean weather, but I did get to experience the mugginess that came with it.

As I was wheeled into the new ward, I couldn’t help but notice it looked more tired than I was. The lights were blinding, the walls peeling and where the curtain didn’t quite cover the window, a small blade of light stretched across the room. This was to be home for the next few days, and although it was somewhat lacking, it was infinitely more equipped than the last ward.

 

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The headphones were a real #treat

 

My new bed had a TV. It didn’t really work properly, but it was a familiar sight and comfort. This bed had a remote that enabled me to move the backrest up and down, a fresh pillow and a light blue blanket. What a treat. I was wheeled across the ward and helped onto the bed by the porter. Once I had settled a nurse headed in my direction and introduced herself.

Nurses are some of the toughest people alive. They are the workhorses of the ward. They help you to eat and wash, they take blood and attach drips as well as humouring your poor conversational skills post morphine. My nurse was a Spanish woman, maybe sixty or so. She had a sort of motherly kindness that was counterbalanced with a dogged professionalism. She would tuck you in at night but if you didn’t drink your water before bed she’d stand there until you did.

My temperature and blood pressure were sky high. The skin on my leg was stretched, shiny and red. It hurt to touch, even in my pyjamas, so I lay in my underwear most of the time which, let’s just say, had a habit of revealing a bit too much (Charlotte had to buy me a size up as my leg didn’t fit!). I lay in bed, my eyes dotting around the room and before long drifted to sleep.

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We named my leg ‘Ole’ Red’

I was awoken up by the arrival of a new roommate. He seemed a friendly soul, grey haired and in his late seventies I would say. His tenure didn’t last long at all however as he was there for the night and gone the next morning. This happened repeatedly: elderly folk in for the short-haul. There wasn’t much point in getting to know them as each time I fell asleep they had disappeared by the time I had awoken. So it was just Charlotte, my Spanish companion and me.

It took me a while to clock that I had been put in the ward designated for the elderly. I thought it was our aging population and incredible health care that increased the odds of these old timers being my roomies, but it wasn’t. I later learnt that I wasn’t expected to be in the ward for much longer than a couple of days, so I didn’t quite qualify for the shiny new wards upstairs. Instead I had to make do with my current company. “Can you help me pee, nurse?” I was asked numerous times. I was half naked and also in a bed, but I guess because my skin wasn’t prune-like they must have thought I was a scantily clad nurse.

I kept my head clear of negativity for as long as I could. When you feel like death the last thing you want to do is a crossword, or watch a film. The glare was too much on the screen and I could barely string a sentence together, never mind find the answer to 4 down: “a putty like substance”. Nevertheless that’s what I did, and the answer is MASTIC by the way.

Charlotte kept me engaged. She also bought me food from the M&S downstairs so I could avoid the hospital food. The rumours are true – it’s disgusting. I had one cold curry and decided if I wanted to live it would be best to stop eating it. Sometimes I would even go with Charlotte (it was quite the adventure).

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Josh’s fun day (ft.Char) out of bed to M&S

In hospital you eat where you urinate. You also sleep there, drink there and well, live there. Naps were short which was largely due to the shrill of the ward alarm that would always go off just as you began to sleep; it was unforgiving and rarely gave you a moments rest.

I had never seen so many needles in my life. The nurses would just smile, pull out a needle and tap you on the arm. I would usually sit up, smile and ask the nurses how their days were going. In a bizarre sort of way I took comfort from them taking my blood, as I knew where ever it was going, it was going to contribute to my recovery. Take it! Take all of the blood!

The days were going very slowly and my bed was becoming somewhat of an island. When I stood up my leg would turn a reddish-blue where the cellulitis had disrupted my circulation. Over time blisters began to appear down the back of my leg, the ones behind the knee were particularly painful. Walking five metres felt like a marathon (not that I’ve ever ran one) so shower time took me a while. For the first time in my life I enjoyed a cold wash, which felt unbelievably soothing on my swollen, sensitive leg.

Amongst all of the trauma, there were two people that made my experience of it all infinitely better, and infinitely worse. One was a doctor and the other a fellow patient. One was kind, sweet and caring. The other was racist, sexist and nasty.

In my next blog I’ll tell you all about Dr Sophie and what a difference a good doctor can make to your whole outlook. But I’ll also talk about Patient X (I never caught his name) and the damage a negative person can do too.

Part 1: Two Weeks Annual Leave

That was the deal. Five days of overtime for two weeks annual leave. I had it all planned out. A spa day, a weekend in Paris, mum’s 60th and a trip to Wales with my closest friends. Great.

It had all started off so promisingly. I was visiting my girlfriend Charlotte in Bristol where she had just finished her degree. Joining in the celebrations we made our way to a pub, The Hobgoblin, where a crude drawing of Nigel Farage granted us a worthy second place in the weekly pub quiz. We never do well in pub quizzes I remember thinking. This was certain to be a great two weeks and for our hard work we were rewarded with a round of drinks.

We moved on to the next location where outside I found a ten-pound note on the floor. Anyone would have thought I’d just discovered I was royalty, and for the brief hour it lasted, I was. Ten pounds quickly became fried chicken and chips and a satisfying conclusion to a much-deserved night. Well, on Charlotte’s behalf at least.

The next morning arrived and Charlotte and I were making our way to a board games café for some brunch and a detox. No sooner than five minutes after our arrival my toes felt a little sore and a bit hot. I went to the toilet to inspect my foot, assuming I might have put my Lymphoedema through a bit too much the night before.

I couldn’t get my shoe off. It hurt too much. This was not normal. Eventually, after loosening every lace I managed to free my foot and upon touching it I felt a considerable amount of pain. I hopped to the exit of the café and made a call to 111.

After a brief discussion surrounding my symptoms it was clear I needed to visit a doctor quickly.

We made our way to the Walk In Clinic, which was situated in a Boots ten minutes away from where we were. By this point I couldn’t walk. The pain had moved up to my shin and that’s when I started to panic. There was no doctor in but the nurse prescribed me some antibiotics. Charlotte made her way down to the pharmacy. I sat down in the Marie Claire section of the make-up department next to two ladies.

“Are you alright?” one asked. I was not all right. In fact it’s safe to say I’ve never been so not all right in my life. I was all wrong and in a lot of pain, which had now reached my groin. It felt like lightening bolts pulsating from toe to thigh. I began to shake, my heart racing and my eyes tearing.

With that we headed to A&E, which was characteristically overflowing with every type of ailment known to man. I was put to the front of the queue and was soon seen by a doctor. I was later told had there been any delay it could have been fatal. That’s always good. Charlotte rang my parents and told them I was going to be okay. We didn’t want to scare them as they were preparing for mum’s 60th.

“Don’t worry, cellulitis can be cleared in a day or so with some antibiotics” I was informed by the doctor. Mum had always warned me about cellulitis, but until you experience it you don’t take notice, much like receiving your first speeding ticket. The infection was already pretty heavy, so I was asked to stay in overnight just in case.

They marked around the red patches with a pen so they could tell whether the infection was spreading. I was put on a drip to keep hydrated. At this point I felt a little better as I was in safe hands and it was only a night’s stay so nothing too tragic. We passed the time with card games and smartphones before I knocked back some painkillers and tried to get some sleep.

 

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Please do not cross the line

 

Absolutely no sleep was gained that night. I had neither pillow nor blanket and the sounds of the emergency department bounced around my head like a pinball. I tossed and turned using my hoodie as a makeshift pillow, eavesdropping on the quarrels of neighbouring patients. The codeine I was given made my stomach twist, making me squirm. Eventually morning arrived and yesterday’s doctor pulled back my gown for the big reveal. I could see by the look on his face there was not too much to smile about. It had spread and my whole leg was inflamed with a dark red. They took some blood and sent me up to another ward where a specialist saw me.

 

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This was life now

 

There’s something oddly unsettling about a doctor staring inquisitively at your body. He admitted right then and there that he wasn’t sure why the antibiotics hadn’t worked and why it was the infection was so aggressive. I sat there just as clueless as he was. “It will all be fine”, I was told, and on that note he left the ward. I wasn’t scared at this point, more uncertain than anything.

I stayed in that ward for about five hours and amongst all the commotion something stood out for me. A nurse said I didn’t need my leg raised as I was on a bed. As you might know “Lymphoedema 101” would state otherwise. It’s nothing major, it just highlights how little is known about the condition.

Eventually my time came to leave my temporary bed. I got out of it with the help of the nurse and sat down in a wheelchair. Walking was not an option. From here I was transported across the hospital to a new ward, one that I now refer to as Death’s Corridor, and yes, it is as fun as it sounds.

If you want to know anymore about my hospital experience please get in contact. Cellulitis can be life threatening, if you don’t know what signs to look for, you can find some tips here.

I Don’t Want to Go Travelling

Okay, I do want to travel, really badly, but the UK is quite literally a giant fluffy pillow compared to the rest of the world.

Lymphoedema makes it incredibly hard for the affected part of your body to fight infection. That’s why it is essential to keep healthy through nutrition and exercise in particular, so that if one day you do get a cut you stand a better chance of saying “no infection, not today”, or any other day for that matter.

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How to Spot Cellulitis

Okay. I’m no doctor, but I’ve had Cellulitis and it really, really hurt. That’s not meant to scare you (as it can be really quite minor) but the infection is no joke. If you are unfortunate enough to catch it, look out for these signs:

  1. The most obvious sign of Cellulitis is blotchy red skin which becomes sensitive to touch (try not to, you’ll aggravate it).
  2. Travelling pain. Mine started at the base of my toes, moved to my foot, shin, calf, knee and up to my groin. It’s essential that you stop it ASAP as the infection can further damage your lymphatics the further around your body it spreads.
  3. You might get hot, cold, sweaty and shiver i.e. a fever. Not fun.
  4. Heat. For Lymphoedema this is a sign of any aggravation in general, never mind Cellulitis. Where there is heat, often there is something going on, but in the case of Cellulitis the heat will be noticeably more apparent.
  5. Another key sign of Cellulitis is glossy, shiny skin. Almost like someone had layered your skin with a coating of plastic, your infected body part will feel tight and sore.

 

Life is for Living

It took me a while to come to terms with my Lymphoedema. For about six years I simply ignored the symptoms, as that seemed the easiest way to deal with it. As far as I was concerned, if I acted normal, I was normal. It was just one leg after all. There was no wheelchair or crutches and I could wear my jeans to hide my “fat leg”. Simple. Condition cured. Job done!

Except Lymphoedema doesn’t work like that. It requires constant attention, care and treatment, so ignoring it is just about the worst thing you can do. My stint in hospital taught me to accept the disease. It was as much a part of me as my extraordinarily long thumbs, or say, my enchanting brown eyes (don’t deny them).

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