I absolutely love travelling. Last year alone I took more than 30 flights and I’ve tried extremely hard not to let lupus stop me from doing what I love. However, I must admit it has been awfully difficult and demotivating at times, and I’ve questioned whether it was worth it when I kept feeling drained after each trip. I got to a point where I considered stopping completely, and comments like “just stay at home” or “surely lupus isn’t that bad if you are jetting off every so often” really took a toll on my outlook of travelling.
I decided I wasn’t going to let lupus win and since then I have learnt a few tips and tricks and a little bit more pre planning to help make my journeys, and hopefully yours, a little easier.
Let’s start off with the airport:
- Arrive early at the airport and have your journey pre-planned whether it’s taxi, train, car, etc so there is no stress on the day.
- Book special assistance directly with the airline – they will help you get to your gate, transfer if you have connecting flights, and all the way through immigration to baggage hall. This is particularly helpful during long flights, especially if you struggle to walk like me. Remember you don’t have to use it, but having it prepared if you need is always the better option. You can also choose to use it partly, for example, I am generally ok managing to the gate myself and only really use it when I arrive at my destination after the flight. You often get priority boarding which means less waiting around.
- Take your medication in your carry on and keep spares in your checked-in luggage. Keep these in a clear bag to make it easier through security. Remember to keep your prescription stickers on the medicines or keep your prescription note with you. If you have prescription liquids over 100 ml these CAN be taken through and DO NOT count towards your entitled liquid limit.
- Book aisle seat / extra leg room seats so you can stretch.
- Try to walk around the cabin often to help circulation.
- Use compression socks to help with circulation.
- Select in-flight meal preferences if your airline offers this, or take snacks/food of your choice on board.
- Keep hydrated.
- Wear glasses instead of your contact lenses as contacts are more likely to dry out due to cabin pressure. Take dry eye drops if you need extra lubrication.
- Wear comfortable clothing and footwear.
- Wear SPF on the flight – some people are sensitive to cabin lighting.
- Take a hot water bottle on board with you and ask a flight attendant to kindly fill this for you. Trust me it’s a life saver for your joints.
- Take painkillers that work for you if you struggle in the sitting position for a long period.
- Sometimes the dry air causes irritation or nose ulcers – use creams or steroid sprays to maintain that area.
Don’t try to be a HERO! I’m joking, but what I mean by this is don’t be afraid to ask for help or extras. The worst they can say is no, but most of the time I find that staff are extremely helpful. This could be little things like extra water in the room, more pillows, or having a room closer to the lifts or on the ground floor. On my last holiday, my hotel room was quite far from the pool. I asked for a buggy ride to my room and they happily helped. It’s the small things that make the difference.
- SPF 50+ should be always used regardless of climate because UV is all around us even on a dull day in the UK.
- If you are going to a hot destination, remember sun hats, caps, sunglasses, travel umbrella.
- Keep hydrated.
- Take mosquito/insect repellent depending on the destination as lupus patients are more susceptible to insect bites.
- Take extra medications. I always take steroids with me in case of a flare.
- If you struggle with mouth ulcers and breakage in the mouth, pack anaesthetic, gels and ointments which will allow you to eat a little more comfortably.
- Remember to take out good travel insurance with lupus DECLARED.
- Keep documents of your condition with you including diagnosis and treatment. These are easily available through your GP or consultant.
- Keep any ID such as a blue parking badge or original proof of any disability benefits with you. It can often come in handy for excursions, or helping you get priority in places where queues are extremely long.
- Remember if you are unsure about anything, speak to your GP before you fly. NO question is a silly question. You’d rather get that clarity first.
- Check the destination and whether you need any vaccines.
- If you are travelling for an extended time, contact your GP early. some GPs need you to fill in a form to give you extra medications. Remember pharmacies take their time too, so don’t leave it until the last minute.
- Travel with those who ‘get it’ or are aware of your condition. It can often feel overwhelming trying to join in every activity or keep up. You may feel like a let-down, but remember pacing yourself is so important. Be proud of the fact you made it and don’t be harsh on yourself. I have recently returned from Costa Rica, which was a jam-packed, activity intense holiday. We moved 4 different hotels in 10 days and the transfers were long. I took part in most activities, but on the last 2 days I could feel my body giving up on me. I felt like a let-down, telling my sister I needed to rest; we still had a few more bits planned but I couldn’t do it. If I tried, I probably could have pushed myself, but I knew the consequence when I returned back to the UK. My sister hugged me and told me she was so proud of everything I had achieved in that trip and asked me to rest while she continued. At that point, I reflected and felt I needed to be a little kinder to myself and grateful of all what I had completed rather than focus on what I couldn’t finish.
- I know it is not always possible, but I try to have one rest day when I return back home instead of going back to work straight away. Again, this is not always possible, but if you can plan your trips to allow a rest day after – do it.
- Since covid, I always carry extra masks and hand sanitizer with me and anti-bac wipes. They always come in handy.
Remember lupus shouldn’t mean you stop living your life. It definitely is a pain in the ass and some days SO much harder than others, but we keep going, we keep fighting, and we push through. Don’t be afraid to go away. Anything that goes wrong, you learn from. I’ve not been a pro from day one and still by no means am. I learn by making mistakes, testing my body, and then realising when to stop and slow down. I will keep making mistakes and so will you but if there’s one thing I’ve learnt is you have to be your own cheerleader and encourage yourself. If you love travelling, go for it! Make the memories you deserve.