With the weather warming up and summer only around the corner, we were thinking about holidays (we know that you have been, too!)
We all know that holidays or time away, whether abroad or a stay-cation can be relaxing, enjoyable, and a much-needed break from home life for many. However, from an Acceptance and Commitment Therapy (ACT) perspective, they can present an opportunity to take committed action towards a value; something that really matters to us.
We asked clients with neurological conditions and their families about their experiences of going on holiday, and how they managed to get from A to B in light of any challenges that were experienced along the way.
A parent told us: “find ways to overcome the hurdles. The results are worth it” – very well said, if you ask us!
Clients explained that it can be valuable to come back into our lives after a break with a rested body and fresh perspective. This can help to remind us who or what is important in our daily lives.
Clients and their families told us that they really value a change of scenery, time spent with family and friends, and a new adventure. They think that it’s important to have something to look forward to.
Some value learning, and so look forward to having places to visit and an opportunity to learn about the country, local food, restaurants and trying new things. They also look forward to fun activities and entertainment.
Many people with neurological conditions find that their holidays are impacted by their conditions. This could mean having less choice of accessible destinations, or activities. People may choose to stay in the UK, and seek destinations such as centre parks or beach towns like Cornwall. Those that have travelled abroad may require more support from family or carers.
“understanding from others and fatigue I found difficult at times”
“[my son] was hot and fatigued which impacted his mood. he felt nauseated, which was made worse because he was hungry and dehydrated. Once on the plane, the staff were very understanding and were able to offer him drinks etc … snacks were very helpful. He stood up and walked around the plane as he found sitting for so long uncomfortable. On landing he felt dizzy.”
“because of my memory I’m not sure where my passport is”
Clients have noticed that others were more understanding if they used a mobility aid. There seemed to be a gap in knowledge regarding the other ways in which a disability can impact somebody. ‘special assistance’ staff were very helpful and assisted with wheelchairs, and (whilst this is great!) it is less helpful to somebody requiring a different form of support for a hidden disability.
One of our clients explained his experience of this: “No-one in travel knows brain damage, but they do know a wheelchair. If you want to be treated with extra care, use a wheelchair. If you don’t speak the same language, people will still know that there is something wrong with a wheelchair. Also, the people that push you around in wheelchairs tend to be lovely people.”
Another parent told us that “I was signposted to a charity that supplied a sunflower lanyard for him to wear whilst travelling which signalled hidden disabilities … I printed off a symbol from the airline which I placed inside his passport and alerted staff to his brain injury and the need for assistance. I was given a pre-written letter to take outlining his difficulties that I could give/show the airline/airport staff. On seeing the symbol he was able to avoid the long queues in Security, given a wheelchair and on the return journey transported on a buggy”.
This is all about navigating the unknown, which is tricky if we rely on familiarity and consistency to cope. As our client said, “Holidays open up a whole new chapter of difficulties. It puts you in a whole new setting that you have not experienced”
Start Planning Early
The more time you have to book suitable travel, accommodation, and all those holiday extras eg. health insurance, and think about what to pack, the better! liaising with airports and airlines, returning forms and requesting doctors’ letters can be time-consuming.
Managing Expectations and Setting Goals
Setting realistic goals, and breaking them down to problem-solve each step towards how it could be achieved might be helpful. Asking for support with these tasks can be useful.
“For me as [a] mum, it was about making his wish for a holiday achievable”
Consider booking through a company or agent that is able to liaise with the airline on your behalf, and advise on accommodations that can be made to help you. They will be able to send you all the right forms to complete for any mobility aids, and your fit-to-fly medical form. They will advise what paperwork you will need from your doctors.
Delegating tasks to somebody that you trust avoids feelings of overwhelm, the potential to make mistakes, and allows you to focus on other important things to you. For these reasons, it can be helpful for clients to ask for support e.g. from mum, or a partner/spouse.
Enquire about Airport and Airline support
When embarking on a longer (perhaps more daunting) journey further afield, it’s important to know what support is available to you through the airport, airline, and how they can accommodate any additional needs that you might have on your journey. Most airports will have a ‘special assistance’ team that can be requested with your flight booking ahead of time. you can usually contact them with any specific questions before you fly. If you need something, don’t be afraid to ask!!
Helpful Travel Guides
See if any local or national charities offer travel guidelines for your medical condition – these often provide a step-by-step guide and tell you what you might want to consider (they’re speaking from a place of experience, knowing others’ that have travelled and the lessons they’ve learned along the way).
Consider asking in support groups or your healthcare team for recommended travel health insurance companies that will cover pre-existing medical conditions, or that are familiar with your condition.
Consider packing anything that might make you more comfortable or better manage your symptoms whilst travelling. Eg. investing in a good neck pillow, or supportive seat insert. Consider whether you tend to get warm or cold, and dress accordingly. Wearing layered clothing can be helpful if you experience temperature fluctuations. Consider whether you will need to take medication with you, at what times, and whether this will require a doctor’s prescription. Any medical equipment, and artificial nutrition will require a letter from your consultant to get through security.
Nutrition and Hydration
Plan ahead how you will manage your fluid and nutrition whilst travelling, as this can impact symptoms of fatigue amongst other symptoms such as headache and cognitive skills.
Writing a to-do list or scheduling time each week in a calendar to tackle one holiday-related task at a time can be quite a helpful way of breaking it down and keeping track of tasks completed and those still to be done.
A parent told us that she “arranged a zoom chat when [we] booked the cruise. We discussed all of our needs and how these could be accommodated. I had made a list of questions before the zoom”
“go on a cruise, they’re brilliant … on the cruise we made sure transportation to day trips was accessible. Staff were very helpful with guidance on what we could do. They also ensured that we had easy access on/off the boat”
“Be aware of the things that you dislike – noise, crowds for instance – and having times to visit when its quieter”
“perhaps avoid long-distance travel initially, evening flights are calmer, with dimmed lightening and the opportunity to sleep”
“We were not prepared for how long it would take to recover from the fatigue and jet lag”
Written by Ellie Ewbank