Go exploring: do not let lymphoedema keep you from travelling

Most people are aware, there are several risks and problems that travelling with lymphoedema can pose. From the reduced pressure of aircraft cabins to changes in diet, exercise, temperature and of course, the disruption to your usual manual lymph drainage and skincare routine. There are several factors that make managing your lymphoedema while traveling more complex, however, there are solutions. This blog looks at some advice for anyone looking to get out and about; whether travelling for work or a well-deserved holiday.

Living an active life with lymphoedema

As anyone will tell you, the key to maintaining a positive mental attitude and joie de vivre is staying active, however this does not necessarily mean running a marathon every month. Getting out and seeing new things is stimulating for the body and mind and offers fresh perspectives and some much-needed respite from arduous day-to-day work. With that in mind, you should not let anything hold you back from booking the holiday of your dreams. Everyone is affected by lymphoedema in a different way, so there is no 'one size fits all' advice for travelling with the condition. First and foremost, you should always speak to your healthcare professional prior to booking or making travel plan, to discuss any potential things you should plan for or be aware of.

Lymphoedema and flying

Swelling caused by lymphoedema is most frequently treated by compression therapy, targeting the affected area by applying compression pressure that helps promote the movement of excess fluid out and away from the limb. When travelling in a plane, the cabin pressure is lower to that usually experienced and can therefore prompt the onset of lymphoedema symptoms or worsening of swelling. Consequently, it is extremely important to wear your compression garment throughout the flight and take extra care. There are also various other things you can do to ensure you give your body the best possible chance of overcoming any difficulties.

  1. Give yourself plenty of time to get to the airport and gate. Rushing will be stressful and counter-productive
  2. Stay well-hydrated
  3. Stand up and take a walk around the cabin frequently throughout the flight
  4. Perform muscle pump exercises while seated
  5. If you experience any changes in sensation in your legs e.g. tingling, pain, loss of feeling, remove your garment immediately 
  6. If your garment becomes uncomfortable and you experience pain, or you feel numbness in your toes during the flight, please remove your garment immediately.

Once you arrive at your destination, it is advisable that you take a rest and elevate the affected limb for a short while to reacclimatise.

Skin care while travelling 

It is important for any lymphoedema patient to practice excellent skin care due to the complications that can arise from infection to wounds. This means that being careful to not get sunburnt is important, along with the need to protect yourself from mosquito and other insect bites that may lead to unconscious scratching. Be sure to also check whether you will need any inoculations for travel to your destinations: if these are required, be sure to have them administered (when possible) to the side of the body your lymphoedema does not present on. After, keep the area clean and bandaged until completely healed.  

General advice for those on holiday 

Your holiday is the perfect time to rest, relax and check in with your health. With adequate preparation and a few easy rules to live by, your holiday can not only be gorgeous to the eyes and exhilarating for the senses, but beneficial for your body and mind too.  

Swimming is one of the best forms of exercise for anyone living with lymphoedema, as the water provides a comfortable and supportive form of pressure that lets you use your limbs freely without the need for compression garments. If your hotel has a swimming pool, try to get there early in the morning when it will not be too busy to get some exercise in. Be wary of swimming when busy as it increases the risk of a stray arm or foot hitting you.  

Staying hydrated is very important as it helps your body to regulate its temperature. In warmer climates, your blood vessels will dilate, allowing more fluid to flow into your lymphoedema limb and potentially pool there. Similarly, if your destination is set at an altitude higher than your usual residence, you may need to factor this into your preparations too.  

Finally, no matter whether you are planning on relaxing at the beach all day or hiking across mountain paths, the most important task is that you check in with your body to see how it feels and what it needs. Always be prepared with a spare garment and / or bandages in case you start to feel additional swelling, and do not be afraid to elevate your limb should it start to feel heavy.  

For more tips on travelling with lymphoedema or just to chat with others living with the condition, why not join LymphConnect and be part of the community? It is totally free to use; you can discuss your own journey with lymphoedema and learn from others’ experiences too.

The avalanche of support she received is no surprise. There are millions of people across the world living with the disease, yet there is still a desperate lack of available resources. Whether  it is help with garment donning or exchanging different diet and exercise tips, for many people being able to discuss the day-to-day practicalities of living with lymphoedema is itself a turning point. For Amy, this is what made building a network with others so easy: “We instantly had a connection because we had never been able to connect with other people.” 

The global reach of the issue is demonstrated by the speed with which Ninjas Fighting Lymphoedema has expanded its operations: despite the foundation being set up just three years ago within the local community, it has already helped people in places as far-flung as South America, South Africa, Germany and France. 

A newfound purpose in life

Ninjas Fighting Lymphoedema strives to address the core areas that govern how people live with their condition. This means offering assistance to patients in the form of financial aid for treatment compliancy, running public awareness initiatives, campaigning for legislative change, and highlighting the condition within the medical community itself. For Amy, all of this is driven ultimately by a single unified ambition for people living with lymphoedema: “I want them to have a good quality of life. I want people to feel a part of the community, I want them to feel important - they are chosen to be champions and were chosen to be different for a reason.”

For anyone looking to see the kind of results that the foundation’s efforts have on individuals, they need look no further than Amy herself. After spending years questioning her identity and place in life, struggling to fit into a society that  did not understand or accept her condition, she is now more confident and driven than she could ever have dreamed. 

“Today as I continue to speak out for others and the foundation, I understand 110% why I am doing what I’m doing and why I have lymphoedema … I used to hate my life, but I  could not be happier now. I would not trade it in for the world. Not even the years of darkness I went through, because it helps me understand other people in that situation. It has helped give me a compassionate heart and it gives me patience with others, because I really understand the agony they are in and the pain they deal with - because I dealt with it for over a decade.”

The road ahead

Even in the last 10 years, public awareness of lymphoedema has come leaps and bounds and new treatment options are constantly becoming available. As more and more people like Amy choose to stand up and make their voice heard, the future for those living with lymphoedema continues to shine brighter. 

If you are looking for ways to become more involved with the lymphoedema community, you can start by joining LymphConnect’s own free community or by getting in touch with Ninja’s Fighting Lymphoedema or another foundation in your area. 

When we asked Amy what she would say to people who have been recently diagnosed or are just beginning their journey with lymphoedema, she told us this:

“Your life is just beginning.”

Find strength, encouragement and support right here - Join the LymphConnect community - register here to share your lymphoedema experiences, stories and top tips.

Author: The LymphConnect team

Date published: 17th September 2020

References available upon request