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Lymph-what-oedema

Primary & Secondary Lymphoedema Online & in the Community

Welcome to our Out and About Page

When you live with a long term condition planning is the key to making your trip a safe and happy one.

Out and About

Welcome to our Out and About page.  Living with Lymphoedema means we have good days and bad days so being prepared for our travels whether it's for a couple of hours or several weeks is important.

This page is all about giving suggestions and planning your journey for the following:

  • Day trip
  • Business meeting
  • Going to college or university

Being prepared when living with lymphoedema is so important.  Therefore, research where you are going.  Plan, build in extra time to your planning.  If you have a wheelchair will the transport you are using have accessible areas.  If you have a carer is there room for both of you.  Be prepared to pace yourself.

If you are going on holiday visit our Holiday Care page.

Mobility Problems?

Number One Rule - Can I get back?

If you have mobility problems with walking, ask yourself

Can I get back to my car?

Is there a seat where I can take a break?  

Do I know where the nearest toilet is?

Travel by Car

My tips:

  • Build in time to get out and have a walk
  • Can you stretch your limbs in the car?
  • Do you have enough leg room?
  • Wear your compression
  • Make sure your seat belt isn't too tight
  • Remember to do ankle and finger exercises
  • If it's hot use the air-conditioning
  • Have you packed drinks/snacks?
  • Drink plenty of water
  • Pack baby wipes for that quick freshen up
  • Walking aids

Blue Badge UK

If you have mobility problems, please apply for a Blue Badge, you can do this through your local Council.

 

Travel by Bus

  • ​Use rest breaks to get off the bus
  • ​It is unlikely you will have leg room
  • ​Stretch your limbs
  • Do ankle and finger exercises
  • Drink water​

Bus Pass

Are you entitled to a bus pass?  Search https://www.gov.uk/apply-for-elderly-person-bus-pass enter your post code and this will take you to your council's website.

Travel by Train

Travel by train?

  • How accessible are the train stations?
  • Are their lifts between platforms?
  • Are toilets signposted and easy to find?
  • On the train can you move around?
  • Moving your limbs is so important
  • Have you packed drinks/snacks?
  • Book Assistance in advance

If you are struggling, don't be afraid to ask for help from fellow passengers.  You do not need to be the first off the train.  Make sure your affected limb is not jostled by other passengers.

Emergency Funds

Nobody likes to talk about finances but do carry an emergency fund for those unexpected expenses such as:

  • paying for the loo
  • that extra cuppa or meal not planned for
  • unexpected night in a hotel
  • unexpected medical expenses
  • travel delays

First aid kit

I asked L-W-O members what they would carry as essentials on a day out, between them they compiled this list:

  • Water
  • Pain Killers
  • Hand gel/hand wipes
  • Antiseptic cream
  • Antihistamine cream (in case of bites/stings)
  • Moisturiser
  • Plasters
  • Diarrhoea medication (for IBS)
  • Sun screen
  • Medical Alert cards or wristbands
  • Cereal Bars
  • Blanket
  • Fold-up chair
  • Spare compression garments
  • Book/Kindle
  • Radar Key or I need the loo cards
  • Change of underwear

Importantly you need someone with you to speak for you if you become incapacitated, to make sure that:

  • NO Invasive procedures to your affected area.
  • NO blood pressure readings/blood tests, Injections, IVS

 

Research Accommodation

If you are thinking of staying overnight.

  • Are lifts accessible?
  • Wet rooms or accessible showers
  • Is there a porter to help with luggage?
  • Is reception 24 hours in case you need assistance?

ICE

In case of emergency.   Please make sure you have ICE (in case of emergency) on your mobile phone.  These apps allow you to have a list of your medication, illnesses, next of kin, relevant telephone numbers and lots more information.  I have this message in my app; Lymphoedema no invasive procedures to right arm. No BP/Blood tests to right arm. No injections or IVS to right arm. 

Walking Aids

Image result for walking seat aids

If you struggle with walking this type of aid acts not only as a walking stick but becomes a seat for those moments when you need to rest.  There are so many different options to make life easier.

Disability Information

None of us like to think of ourselves as being disabled but mobility problems come in various different forms.

From the swelling and painful lymphoedema in your feet, legs, arms or other areas that can't be seen.

It might be from arthritis where walking is extremely painful or the pain you are suffering from the neuropathies people can't see.

It might be from the incontinence issues or bowel/stomach problems that cause you a great deal of embarrassment.

Or the mental health issues that you are trying to keep to yourself, putting on that brave face and telling the world you're ok.

This section is not about solving those problems but giving you some information that might make life a little easier.

Radar Key

Rushing to the loo and you find the nearest disabled toilets are locked and your bladder/bowel can't wait while someone finds a key.

Then you can buy your own key from: As of September 2017, retailing at £4.50

https://www.disabilityrightsuk.org/shop/radar-key

 

Whether you are out in town on the edge of a town in the car these companies will allow you to use their loos free of charge.

MacDonald's, Burger King, KFC, Costa, Starbucks

 

Incontinence/Bowel Problems

If you have incontinence or bowel problems this app or card should be a great help.

https://www.bladderandbowel.org/help-information/just-cant-wait-card

The card which you can order online is free

Or for £1.99 you can down load the app to your mobile which makes this instant. It also gives you information as to where your nearest toilet is, unfortunately only available on IOS.

Cinema Card

Did you know that you might be entitled to a free cinema card that allows your carer to go to the cinema free, if you receive the following?

  • Disability Living Allowance (DLA)
  • Attendance Allowance (AA)
  • Blind Persons Registration
  • Personal Independence Payment (PIP)
  • Armed Forces Independence Payment 

The card costs £6.00 and is valid for one year

Fuel Assistance

There is a free app that lets you know which fuel stations in your area have staff available to assist disabled motorists. 

If you struggle through disability to fill up your fuel tank that, there is help at fuel stations.  Fuel Service is a free app that lets you know which fuel stations have staff available to help.  The app contacts the station in advance and lets staff know when you arrive.  The station will confirm before you arrive if they have staff available.  Find more details:

www.fuelservice.org

 

 

 

This page was first published 6th October 2017

Page updated 23/03/2018

  • Underlined links indicate that they lead to another L-W-O page or an external website, or email contact.
  • L-W-O does not guarantee the information or endorse external links to other websites.