Tips for going on holiday with post-concussion syndrome

I've taken several holidays since I sustained a concussion and soft tissue injuries in a collision in November 2016, and it has become easier each year. Not just because my symptoms have improved but also because I've learnt a lot each time I've been away. Going on holiday with post-concussion syndrome can be a real challenge but, in my experience, the benefits far outweigh the negatives. As I look back, I can see the importance holidays have played in my recovery.

Deciding if you should go on holiday or not

If you’ve already booked a holiday or you're wondering whether or not to take a holiday, then if you’re able to, I would say it's a really good idea to go ahead. Having said that, if you're early on in your recovery and your symptoms are still significant then it might be worth postponing or cancelling it if that’s an option. That’s a judgement you’ll have to make. If you’re unsure, then check with your doctor. It's always hard to tell in advance how you’ll feel later but if you think a holiday would do you good, and if you feel you can cope with both the journey and whatever you plan to do at your destination, then I’d say go for it.

My experiences of going on holiday with post-concussion syndrome

For my first holiday, about 6 months post-injury, we went camping about half an hour from home and it was a bit of a disaster. I struggled to pack; I couldn't help my husband put the tent up; I had to lie down for most of the time there and I couldn't do a huge amount. I remember being in a lot of pain and discomfort; I hadn’t had treatment yet for vertigo and dizziness and I was also experiencing a lot of noise and light sensitivity. Having said that, it wasn’t all bad and the relatively gentle getaway did me a lot of good by helping me to relax. I was able to go on some short walks around the campsite and fortunately, it was safe for my three children to go off and ride their bikes, play in the playground and make friends with other children while my husband and I shared their supervision between us.

A few months later, I was able to travel to Wales for a week’s holiday in a static caravan but I found the 6-hour drive hard going. While I was there, I struggled with socialising with other people and I ended up spending a lot of time in the caravan, taking things gently. I was glad I went, though, and I enjoyed seeing my children having a lovely time and I was able to do a few fun activities with them.

Over the following two years, we had staycations and planned some gentle days out and about. We stayed at home to avoid travelling too far and to prevent me from getting overloaded. As I love being outdoors and find being in nature very healing, our activities included days at the beach, walks in the woods, taking a small boat out on a lake and pottering about picturesque local villages. As my children were 11 and under at the time, they were quite happy with not going anywhere especially exotic.

About 2 ½ years post-injury, we decided to be a bit more adventurous and went to Edinburgh by plane for a long weekend. The journey was tough for me and when I look back at photos of myself during that time, I can see the fatigue and pain etched on my face. I had to take a walking stick to help me steady myself as I walked around the streets. However, I loved the whole experience of being in such a vibrant city and it was well worth it, despite the symptom flare-ups.

The following two years after COVID we went to the Peak District in the summer holidays. I managed to do quite a lot of walking. We stayed in a self-catering cottage with a garden in a small, quiet village. We alternated gentler activities with more challenging ones but made sure we didn’t pack too many activities into our days. It was noticeable that in the second year there, I could do more than in the previous year.

Then this year we went to Yorkshire, and I was able to do even more. As I look back, I can see that I’ve been able to steadily build up the amount of activity I’ve been able to do on holiday, which is encouraging.

Challenges of going on holiday with post-concussion syndrome

I do know of people who've gone on holiday with post-concussion syndrome and they’ve had mixed experiences: some people haven’t had too many problems while for others it’s been tricky but worth it and for a few, it’s been horrible. For those who found it hard, maybe the journey was long and they got uncomfortable in the car or they struggled with a plane journey. When they got to their destination, they had to rest and sleep much of the time. If they went out for the day, they got overstimulated or overheated. I’ve heard of people having to go home early because it was all too much.

So, if you’re wondering whether or not to go away, then really consider all the different aspects of the holiday carefully and decide whether or not it’s a good idea and think about how you could pace yourself and mitigate your symptoms should they arise. Everyone’s circumstances, injury and symptoms are different so these are very personal considerations.

Generally, long-distance travel on any form of transport can exacerbate symptoms. If you’d like to find out more about flying with post-concussion syndrome, then there’s a helpful article here: https://www.cognitivefxusa.com/blog/flying-with-concussion-or-post-concussion-syndrome.

If you’re planning on going abroad, then Headway discusses practical issues of taking holidays in the following blog post: https://www.headway.org.uk/about-brain-injury/individuals/practical-issues/holidays-and-travel/

Tips for going on holiday with post-concussion syndrome

For the remainder of this blog post, I share some tips for going on holiday with post-concussion syndrome.

1. In the planning stage, choose a holiday that meets your current needs. If possible, I recommend picking somewhere relatively easy to get to, and maybe a destination that’s fairly quiet and calm, though it may be nice to go somewhere with a fair degree of stimulation as well. You want to make life as easy as possible. Also, consider whether it would be easier for you to go somewhere that’s all-inclusive, with all meals included but maybe with a noisy, busy restaurant or whether you’d rather be in a self-catering cottage, where you have to make your own food but you can eat in your own time, and perhaps you can buy in ready-made meals instead of cooking yourself.
2. If possible, go on holiday with other people, whether that’s with a partner, family and/or a friend or group of friends. It’s good to have others around for the company and in case you need any help and support.
3. Select activities you like and that you know you’ll be able to do or that you know will challenge you a bit but not too much. For example, I personally find activities involving water very relaxing so going to the beach or going to a swimming pool are ideal. Things in the first couple of years that I knew I wouldn’t like included anywhere that had very windy roads or that involved heights or going on a rollercoaster. It seems obvious but it’s worth spending some time planning your itinerary beforehand, especially if you’re going on holiday with family or friends who have different interests. Make it clear to any others you’re with that you have certain limitations so they understand; can anticipate difficulties you may encounter and can avoid doing certain activities.
4. Write out or type a packing list in advance or ask someone to make one for you so that you remember to take everything you need. Give yourself plenty of time to pack so you don’t feel rushed and panicked and so you can take breaks if necessary.
5. Make sure you take all your essentials with you, such as important documents you need; any medication or supplements you’re taking; a daily pill box if you have one and any aids that help you. Earplugs can help with reducing noise stimulation during the day, and also for getting a good night’s sleep – I recommend the ones from www.flareudio.com. Coloured glasses or sunglasses can help with light sensitivity; I recommend coloured glasses from www.happyeye.co.uk.
6. If you’re travelling by car, take plenty of breaks if you need them. That will help if you struggle with dizziness, motion sickness or other symptoms.
7. Drink plenty on the journey to stay hydrated and alert. Have some healthy snacks to keep your energy levels up.
8. Avoid reading in the car or looking at your phone too much to avoid feeling nauseous or dizzy.
9. If you’re going away with anyone else, either your partner, family, friend or carer, do keep letting them know how you’re doing throughout the holiday. Let them know if you’re struggling. For example, I frequently have to tell my husband that I can’t walk quite as far or as quickly as I used to. It must be frustrating for him but he's very good about it.
10. Develop moment-by-moment awareness of how you’re feeling and pace yourself. Ask yourself questions such as, ‘Am I pushing myself too hard?’, ‘Am I getting into that ‘danger zone’ where symptoms could flare up so I need to pull back?’ For example, I like going out for the day and doing things, but I don't cope well in large crowds. Sometimes, if I’m walking down a street with lots of people, I can start to sense myself feeling anxious and dizzy. If something like that happens then I tell my family what’s happening and I take steps to recover, such as sitting down on a bench quietly, popping into a quiet café for a drink and something to eat, or finding some shade away from the busyness and heat. It’s a case of having to consciously pace myself.
11. Rest if you need to. You may find that if you have a busy day one day then you’ll need to take it easier the next. I’ve found it helpful to have only one or two main things planned per day. If I’ve been able to do more, then that’s been a bonus.
12. Be flexible and adaptable to changing your plans. That may be that you have a particularly busy day and then if you have plans for the following day, you may not feel up to doing that thing. Unless you’ve booked something specific that you can’t cancel, then be open to changing your plans. For example, you could either have half a day relaxing instead or choose an alternative less energetic activity than you’d planned.
13. As well as trying not to pack too much into each day, try not to do too much in the evenings and get some good nights’ sleep. You’ll probably feel tired at the end of each day. Give yourself plenty of rest so you’re energised for the following day.
14. Give yourself time to unpack when you get back home from your holiday. Also, try to have a bit of a break between arriving home and getting back into day-to-day life. Be aware that you may feel symptomatic when you get back home due to the upheaval of packing up, travelling a long way and then unpacking again.
15. Although it’s natural to feel a bit flat returning to daily life after a lovely holiday, my experience is that those emotions can be more intense if you have post-concussion syndrome. So, if you notice you’re feeling a bit down on your return, then you know what’s happening. Be extra kind and compassionate to yourself and ease into normal life at a pace you can manage. Don’t get annoyed with yourself if you seem to be taking longer to do things or if you feel extra tired. Make sure you get enough sleep so you feel refreshed.

The benefits of taking a holiday if you have post-concussion syndrome

Every holiday I’ve had since my injury has been a timely and welcome break. I’m so glad that I decided to brave it on each occasion and I’ve felt each time that I’ve made progress in my recovery. Having some quality time away with my family has helped to offset the times at home in our day-to-day life that have been demanding or stressful. It’s been lovely to spend time with each other in different environments, enjoying meals, fun and laughter, and relaxing and sharing new enriching experiences together. All the lovely times we’ve had away have stimulated my brain, energised me and helped take my mind off the pain I still experience and some of the frustrations I feel about the ongoing effects of the injury.

If you’ve ever found yourself saying, ‘I’ll never be able to go on holiday ever again’ then be reassured that that’s most likely not true. With careful planning, self-awareness and focusing on your current needs, you should be able to have a very enjoyable holiday. You may be able to go away sometime soon or it may not be for a while, but at some time in the future, it’s likely that you’ll be able to take a refreshing break somewhere special.