Lyme Disease and Travel

For many people, travel is a healer, a motivator, a goal and the best way to expand horizons. For those who are chronically ill,  it can represent a struggle with uneasiness about how symptoms will be manageable, how pacing will be possible throughout the trip and how dietary requirements will be managed along the way.

When it comes to travel, we want to experience as much as we possibly can and make amazing memories. I have always had such a huge passion for travelling. Some of my favourite parts are listening to people’s stories, learning about different cultures and gaining historical knowledge. Through learning more about the world in general, travel helps me to deal with my own issues and worries closer to home. I used to be a traveller who WANTED and EXPECTED to do EVERYTHING. I always filled my days and did not miss a minute. This isn’t a reality I could live up to as I simply crashed and burn out. My symptoms would skyrocket, and I would spend the rest of my trips trying to get them back under control and missing EVERYTHING because I had done too much, too soon and burnt out as a result. For a considerable length of time, this put me off travelling altogether. I didn’t want the emotional upset of missing out and the physical pain of over-doing it and not listening to my body.

Travelling isn’t cheap and that is another reason why, especially when we are trips that have cost a lot, we push ourselves to keep going. To get our money’s worth. The push, push, push mindset is damaging because when we burn out (and those of us who are chronically ill tend to burn out badly) we taint our treasured memories. We look back at our trips with pain and sadness rather than see them as times filled with laughter, adventures and great company. I have learnt the hard way that I can’t do EVERYTHING. I must be realistic, and I MUST pace. I think having a support system around you helps you come to terms with the need to pace while travelling as these people can be on board to help you slow down and take time out when they can see you need a rest. Often, we need a nudge to slow down on our travels because it’s easy to have those blinkers on.

I am positive about travelling now but if you had asked me about it six months ago, you would have got an anxiety-instilled answer and I would have told you that I don’t travel anymore because I can’t. It was too stresful for my family, I couldn’t be catered for as my dietary needs are too complex, airports are way too chaotic for me and so on. So, what has changed?  I think we all reach a point in our journeys when we no longer want this disease to keep taking from us. We want to fight back. I think so many of us have seen our lives flash before our eyes and then panic has set in. We have a bucket list a mile long, we have set goals that we revise daily and we have friends and family with whom we want to experience so much more. The real wake up call for me was listening to my family saying, “We can’t go because of Sophie” and “We can’t risk it because of Sophie.’” It is one thing me being housebound but having my mum housebound too as my 24-hour carer is a different matter. She also has the constant worry of an increase in symptoms, a blip in my health, setbacks and so on.

I had treatment a few months ago and in hospital, I sat in the bed thinking, ‘I am so fed up. I can’t keep fighting. I can’t take a break, a holiday or any kind of rest from Lyme.’ I felt totally trapped. My relationship then broke down and I knew I was hitting rock bottom. My health was at an all-time low. My family was becoming ever more upset, which I felt responsible for. We had a trip planned and I voiced my feelings that really, I didn’t want to go! I was struggling to get through my days. I was trying to keep working and keep some form of focus, but I felt broken both physically and mentally. I felt I simply couldn’t catch a break. I was in the darkest hole, so how could I cope with a full-on 11-night cruise? I just didn’t envision coping. I thought I would be eating on my own if they couldn’t cater for me, missing out on day trips if I was unable to face them and causing chaos for my family.

I know, a negative mindset gets you nowhere, but I must be true with you as I am not a professional at the positive mindset game. I have my day when the darkness sometimes gets the better of me and sometimes I am not the fighter I expect myself to be. So, what happened?  Once on the trip and once I had settled into life on board the ship, I kept an open mind. I left my self-doubt and worries about work, relationships, and health on the shore and tried to live in the moment and be in the present. I couldn’t change my health situation, I couldn’t change the breakdown and loss of my relationship but I could influence my adventures and memories made on this particular trip. So, that is what I did. I was communicated openly with the staff on the ship so they could cater for me, and with my family, so they could support, advise and look after me. I was also open and honest with the group we were with so that they understood if I missed after-dinner drinks or certain tours and you know what? IT WAS AMAZING. I have the BEST memories and I am so lucky. I didn’t do EVERYTHING as I would have liked but I was sensible. I paced. I took time out to rest. I left dinner early to get to bed and listened to what I NEEDED not what I expected or what I thought people expected of me. There was no judgment coming my way and this has helped me to heal my battered sense of self-worth a little.

I came home from the cruise feeling empowered and realising that no longer could I wait for the ‘right time’ to do things. There wasn’t a ‘right’ time. I felt I didn’t have to hold my travel passion at arm’s length through fear of holding it too close and losing it. I realised that I AM OK with adapting my expectations and travel goals around to fit around my health. If I could still live out my goals in any shape or form, then I was WINNING! I began to believe that there is always a way. It just needs to be figured out.

The opportunity then came my way to train as an independent travel agent. I wondered if this was too much. It would take a lot of work and commitment and was I able to take any more on? Then I thought back to how good my recent trip made me feel and how it gave me a healthy dose of life, motivation and my focus back. That was my answer. I want to help everyone take on their travel dreams and ENJOY the world with a little more ease and bags of enjoyment. So, I did my training and passed my exams, specialising in cruising and graduating from the Royal Caribbean & Celebrity Cruises University. My mind has been open to a wealth of possibilities.

I decided to ask in the LDUK Online Community what people’s travel memories are and how travel makes people feel and here are some of the responses:

‘I’m in Turkey at present for a 2 week holiday. I’ve made sure I have DEET repellent protection and I am choosing where to sit carefully to avoid tick bites. My symptoms seem to be less than usual, to be honest.’

‘I do exactly the same as I’ve always done. I go off the beaten track and what will be will be. I’m training to be a mountain leader; I’ve been ill on trips before but just taken a few days to rest.  Everyone is different, different holiday, different symptoms, it’s a hard one to judge!’

‘When very poorly, wheelchair assistance was essential and really helped. I didn’t use a wheelchair usually so I felt very self-conscious about it but made such a difference to airport experiences and coping with travelling.’

‘Before Lyme, I was up mountains, surfing, white water rafting and deep in woodland. I wanted to visit Switzerland, Norway and New Zealand. I couldn’t go anywhere for several years, then my partner surprised me by taking me to Switzerland a few months ago. It was difficult and it wasn’t anything like the type of holiday I would’ve normally have had, but I was grateful, thankful and emotional doing what I could in such a stunning place. It’s hard to not feel sad when you are missing out on so much and it’s hard to cope with the backlash and criticism from others too (“I thought you were too sick to do anything? Aren’t you on benefits now, how can you afford that?”) but on the plus side, the benefits to my mental health as a result of getting away for a few days were massive. I am trying to get away for a few nights each month now.’

‘I just had my first holiday abroad since getting Lyme…a 2,900-mile road trip through France, Spain, and Portugal with my 87 year old mother, my youngest daughter and my brother, in his motorhome. I took my rollator and folding electric chair with me which I need daily. I couldn’t have done this trip without my family’s support. It was an incredible adventure…but now I’m relapsing badly.’

‘I travel abroad a lot and there is always a pay off when going away, but I don’t focus on that I just enjoy when I am away even I know I will have my bad times after that. At the moment I’m getting ready for my big rally – a sport that I love and I don’t allow the illness to take all over my life.’

‘Once I finished IV treatment, I was lucky enough to be able to stay with friends in Ibiza for a few days and it was the best I had felt in a long time. I was able to walk a fair amount, which I can’t normally. The heat made me sweat buckets and I thought this would make me worse but my symptoms actually eased off and I had a good amount of energy. Maybe vitamin D really makes a world of difference. The stress of the flights made me really ill though and I had to use a walking stick in the airport.’

‘I’ll find out in a few months time…. me, my wife and 2 kids will be heading to Disney World, thanks to my whole family clubbing together to pay for it all. I’ve been too unwell to work for the past 15 months and they felt like we all needed to have something positive to look forward to. I’ve no idea how the flights will affect me, but I’ll have a scooter hired for the whole length of the holiday to help me get around, and Disney really is a step above when it comes to catering for people with any disabilities. I have no idea how I’ll cope with it all but I will just take each day as it comes and do my best. In all honesty, my plan is to take plenty of strong painkillers with me and try to make the most out of every day I possibly can, even if I totally run myself into the ground. I will probably never have another chance like this again, so I plan on making the absolute most of it, I’ll worry about the consequences on my health afterwards.’

‘My safe heaven is somewhere hot – e.g. a minimum of  30 degrees for air temperature and 26 degrees for seawater temperature, staying for 3 weeks minimum. All the family things as a team.’

Thank you all for your feedback and input. Do I have any hints and tips from my experiences? I do!

  1. With most airlines, you can book airport assistance. This is a GODSEND. You can be fast-tracked through security, be eligible for priority boarding and receive help getting on/off the plane. Wheelchair assistance means you aren’t wasting vital energy on standing around in queues and walking to your gates. For me it takes so much stress out of the airport experience and you simply have to tick a box or make a quick phone call at the end of your booking. Or if you book through a travel agent, they can sort it all for you.
  1. Book through an agent you trust so they can sort out the finer details for you. These may include:
  • Telling airlines about allergies such as nuts.
  • Ringing the hotel to ensure you have extra cushions.
  • Ensuring that you have booked private transfers, so you aren’t waiting around looking for taxis when you JUST want to get to the hotel.
  • If you do go on a cruise your agent can pre-book dining times. Royal Caribbean and many more of the cruise lines are now introducing ‘Flexible Dining.’ This means you don’t have to stick to the 6.30 pm or 8.30 pm recommended sittings and you can ask to dine at 7.30 pm, say.
  • On cruise lines, if you are a returning customer, you can now submit a request to have a waiter/waitress you know and have had before, putting you and your family immediately at ease.
  • You can communicate your requirements prior to your trip so that chefs, staff and the hotel are made aware and can cater/meet your needs to ensure you have the best stay.
  1. Keep your medication with you in your hand luggage at all time, with a prescription to prove what you need if you require anymore medication whilst travelling. If you take a lot of medications and I know they are heavy and bulky you ( or your agent) can contact the airline and ask for additional weight to be added to the 10kg hand luggage limit on your hand luggage because of your medications.
  2. Travel with a strong support system: they can offer support, help you recognise your limits, pick you up when you need it. Having support with you can really make your trip.
  1. If you have heavy hand luggage, investing in a small cabin four-wheel suitcase so you can wheel your luggage along can be a massive help.
  2. Purchase food from the airport or bring pre-packed foods you can tolerate. Just be aware of nuts as although a great snack for many, there is a risk taking them on planes as if someone has an allergy, you won’t be allowed to eat them on board and then you are a snack down. You can always look on the airline’s website and they will have a brochure of all the meals you can pre-book or food from their menu which you can purchase on the day, so you have a better idea of what snacks you may need.
  3. Wrap up or pack something warm. Your destination might be smoking hot, but the plane is normally quite chilly.
  1. Ensure someone in your party has an extensive first aid kit: plasters, throat sprays, insect repellent, migraine medications, pain killers and so on. You never know what you may need. Having said that, if you are staying in a resort or on a cruise ship, they tend to have a doctor on site or onboard who would be able to help. These services can be costly though if you are taking on a trip like a multi-city, road trip or lodge stay, you won’t have easy access to medical help.
  1. Ensure you practise good hygiene. Cruise lines drum this into you and have handwash stations, hand sanitisers located throughout the ship. Stick to bottled water unless you are 100 percent sure that the water is ok to drink. Wash any fruit and salads well but try to keep to cooked foods if possible.

It kills me seeing people struggle and missing out taking a trip because of fear. I HAVE BEEN THERE and believe me,  I am still learning how to change my mindset when it comes to travel. I took this venture on, in the hope that it would give my friends and family more freedom to travel, ensuring that they too enjoy trips that weren’t entirely revolving around my health. Remember we all deserve to see the world. It doesn’t mean catching a flight straight out to America. It can be as simple as venturing an hour down the road to stay in a lodge which is a hidden gem, full of charm and history. Our dreams are tailored to US and that’s what makes them so special and remember we ARE WORTHY of our goals and dreams.

Thank you!

Sophie Ward