L-W-O Community supports primary and secondary lymphoedema by promoting emotional wellness, lymphatic health, self-care, patient empowerment, online and in the community.
Lymphoedema Travel
Living with lymphoedema means planning as much as possible to fully enjoy and have fun at our destination, whether it's a short trip or a long adventure.
If you have lymphoedema or another chronic condition, you should plan your travel as far ahead of time as possible, whether it's for pleasure or business, a quick stopover or a long vacation.
Although no one likes to think of themselves as disabled, mobility issues can manifest in different ways. They all pose challenges when travelling, from having swollen and uncomfortable lymphoedema in your feet, legs, arms, or other areas that are not visible to having osteoarthritis or rheumatoid arthritis. A few of our members have fibromyalgia.
However, nothing should stop you from getting out and having fun with a little bit of preparation and aid to help us along the road.
Some people live with incontinence issues or bowel or stomach problems that cause embarrassment, and having a radar key or "I can’t wait" app or card can make life simpler.
Travel Anxiety
You may be bottling up your anxiety. Reach out for assistance and secure support in advance—you're not alone, and help is available. Check out availability for support and prebook the services you need.
Business Trip, or Holiday?
Planning is key. Whether I am going on a day out, a short break, a holiday or travelling on behalf of the L-W-O Community to a conference. Spend some time researching your destination. Plan ahead and build in extra time. My two main priorities when travelling are how do I get there and accommodation. I am extremely lucky that in most cases my hubby acts as chauffeur, which I am grateful for.
What do I look for in accommodation?
-
Are lifts accessible?
-
Are there steps or stairs to navigate?
-
Wet rooms, or accessible showers?
-
Is there a porter to help with luggage?
-
Is reception covered 24 hours in case you need assistance?
-
Where are the emergency exits, and are they accessible?
-
Is there an onsite restaurant/coffee shop/bar?
Hotel showers frustrate me the most. I actively avoid hotels with showers over a bath because climbing in is difficult, and safety handles are always missing. As a result, I often lean on the sink for support, constantly worried it might fall off the wall. This increases my risk of slipping or falling. When I request an accessible shower, meaning one I can walk into, hotels assume I need a disabled shower or wet room. The problem is that most accessible wet rooms cater to wheelchair users, with showers positioned far below shoulder height. While this setup works well for those using wheelchairs, it’s completely unsuitable for non-users like me.
Living with lymphoedema, means noticing increased swelling in the affected area during summer or while travelling. Different modes of transportation can make travel challenging and may worsen the swelling. Stress and heat both contribute to this, so it's important to stay mindful. Fortunately, the swelling decreases once you return home. Stick to your skincare regimen as closely as you can and wear your compression garments.
Summer Travel
Summer, especially during vacations, increases the likelihood of swelling, prickly heat, hives, bug bites, and stings. Even a slight change in shower, pool, or seawater can dry out your skin. Always shower after swimming to remove seawater and chlorine, which can further dry out your skin. Whenever possible, moisturise twice a day to keep your skin hydrated. We offer plenty more tips and advice to help you manage these challenges on Lymphoedema Summers.
Be Aware
High-temperature sun vacations can worsen lymphoedema. If you've undergone radiotherapy, take extra care to protect the treated area, as it remains sensitive long after treatment. Always carry sunblock to prevent burns. Staying cool in summer or while on vacation can be challenging, but it's essential to keep the lymphoedema-affected area cool to avoid discomfort
Having fun is essential
TIPS TO KEEP COOL
-
Keep a top or bottoms in a plastic bag in a refrigerator then if you are hot and bothered, you have clothing to change into that is nice and cool.
-
Keep face cloths in the freezer, then when you go out put them in a plastic bag to use on your face, neck hands or anywhere when you want a quick cool down.
-
Keep water in the fridge for a nice cool drink.
-
Going out for the day put bottles of water in the freezer overnight
-
Fill a spray bottle with water keep in the fridge for a quick cool down
-
Invest in a pocket fans. Available in the summer months in some supermarkets.
Lukewarm Shower or Bath
If you do get hot, cool yourself with lukewarm showers or baths, this works better than very cold water.
If you're hot, and it's not possible to get into a shower or bath, at least cool off your affected limb by wrapping a cold wet towel around it and elevating the limb with support.
Some people prefer to cool off by dampening their compression garment. If you do this, be sure that the garment dries in a reasonable amount of time so that there is no chafing of the skin, especially at joint creases.
COOL ROOM TIP
At home or on holiday? This tip I learnt living in Cape Town a few years ago, the benefits of keeping curtains closed.
When you go out, close all your curtains, blinds, shutters so that when you arrive back at home, or to your hotel room, you are stepping into a nice cool room and not into a greenhouse.
This applies to all rooms facing the sun.
STAY HYDRATED
Airports and Flying
Airports are busy, sometimes frantic places, and you will always find someone who is impatient. Whilst it is not always possible, stand back and try to avoid someone running into you with a trolley or bumping into you with their case. The last thing you need is to damage your affected limb.
A pre-booked help policy is typically present in airports. Find out in advance, for instance, how the airport handles disability travel. If someone in your party has autism or learning difficulties, ask if there is a cognitive disability policy.
-
Pre-book your seats
-
During check-in, ask about any available open seats that offer extra space to spread out.
-
Allow plenty of time in your journey
-
Pay for lounge access; far more relaxing
-
Dress in loose, comfortable clothing
-
Wear your compression
-
Make sure your seatbelt is not too tight
-
Move around as much as possible
-
Exercise ankles and fingers
-
Do deep breathing exercises
-
Drink lots of water
-
Avoid alcohol
-
Watch your salt intake
-
Baby wipes for that quick freshen up
Wear your usual compression garment for at least two hours before, during, and after your flight, but avoid wearing a new one.
Prioritise your safety while flying by ensuring your seatbelt doesn't leave indentations on your skin. Request extra legroom when booking your flight for added comfort.
Modes of Transport
By bus – take advantage of the opportunity to get off the vehicle and stretch your limbs. If possible, do ankle and finger exercises whilst travelling. It is unlikely that travelling by bus will give you the leg room you need; therefore, make sure you use the rest breaks. Check that your seat belt doesn't leave indentations
By train - How accessible are the train stations?
Are there lifts between platforms?
Are toilets signposted and easy to find?
Don't forget to do your ankle and finger exercises and if possible, get up and move around. Ask for help if you need it. Preferably pre-book assistance before you travel. If you are struggling, ask fellow passengers for help. You do not need to be the first off, the train. Make sure other passengers do not jostle your affected limb.
Travelling with luggage
Use a case with wheels and avoid lifting heavy cases onto or off the scales or the carousel. Ask for assistance if you need it, or even better, arrange for support in advance. After my diagnosis in 2011, the lymphoedema clinic advised me to avoid carrying hand or shoulder baggage on my affected side. They also advised me against using a backpack.
After my diagnosis, the clinic discouraged carrying heavy items. However, much of this advice is a myth, and some weightlifting benefits lymphoedema. Ultimately, it's a personal choice—do what feels right for you.
Carrying hand luggage:
Make sure your hand luggage has all the necessary compression and medication supplies you will need for the duration of your trip. I always make sure to include a spare set of clothes and underwear. To maximise space, use vacuum or compression packing travel bags. Keep your compression pump in your hand luggage because it's a medical device. Also carry any medical documentation that describes your condition. Don't forget to check the FCO advice for important travel guidelines.
TRAVEL INSURANCE
Travel Insurance. Insurance companies often issue you with an Insurance ID card which you can carry in your purse or wallet.
L-W-O Community cannot recommend an insurance company
-
Declare all your pre-existing conditions including your lymphoedema.
-
Make sure you are covered. If something goes wrong and you haven't declared one or more of your conditions, then that insurance becomes invalid.
-
Please read the small print so that you know how to deal with any problems that might arise.
-
Take a copy, many people will download the insurance to their laptops or mobile phones. What happens if there is no Wi-Fi?
FCO
Travelling abroad. There's extremely useful information on the UK's Foreign and Commonwealth Office travel advice website.
www.gov.uk/foreign-travel-advice
This website covers all sorts of travel issues including.
-
Safety and Security
-
Health
-
Local laws and customs
-
Entry requirements
-
Natural disasters
If you need help when travelling for example lose your passport, it would be helpful for you to know where the British Consulate is situated.
If you are leaving the UK for a break check, that the medication you use is legal in the country you are travelling to, as many over the counter and prescribed medications are illegal in certain countries.
PASSPORT VALID?
Make sure you have six months left on your passport when you come back into the UK.
Do you need a visa?
PHOTOCOPIES
Take photocopies of any important documentation and leave with a trusted friend or family
Emergency Fund
Nobody wants to talk about money, but it's a good idea to keep an emergency fund on hand for things like:
Buying that additional cup of coffee, unexpected lunch, or restroom. Travel delays can require you to spend an additional night in a hotel. Or even unforeseen medical costs that are not covered by travel insurance.
I asked L-W-O support group members what they would carry as essentials on a day out or when travelling, between them they compiled the following list:
-
Water
-
Pain Killers
-
Hand gel/hand wipes/baby wipes
-
Moisturiser
-
Antiseptic cream
-
Antihistamine cream (in case of bites/stings)
-
Prescribed medication
-
Plasters
-
Diarrhoea medication (for IBS)
-
Sunscreen
-
Medical Alert cards or wristbands
-
Spare compression garments
-
Cereal Bars
-
Blanket
-
Fold-up chair (day trips)
-
Book/Kindle
-
Blue Badge
-
Radar Key or
-
Change of underwear
Reminder:
You can get sunburn through clothing.
You can get bitten through your compression garments. Keep checking bites for signs of infection.
Communication and Mobility
Blue Badge
If you have mobility problems, please apply for a Blue Badge, you can do this through your local council. Not all disabilities are visible.
Bus Pass
Are you entitled to a free bus pass? In the UK you can apply for an older persons bus pass, or a disabled bus pass.
Communication
Do you have communication problems? A JAM card or the JAM app is designed for people with Autism, Asperger's, Dementia or Memory Problems
I need the Loo
If you have incontinence or bowel issues this 'I need the loo' card or app is handy tool to have.
Radar Key
The radar key will give you access to disabled toilets in various locations, like bus or train stations, and motorway stops.
Page first created 22/05/2020
Last update 03/05/2025
A huge thank you to Fiona (Fee) Stevenson for all the support and help in writing this webpage.