Travelling can be exhausting and tough on the body even if you’re in the height of health. But spare a thought for those with chronic pain or illness who either can’t travel, or face a whole heap of challenges to do so. Nicola Lavin, from Galway in Ireland, is one such traveller.
Having caught Lyme disease from a tick as a teenager, she spent years living with undetected chronic illness. Despite everything that has been thrown her way, she’s remained positive and determined to travel the world regardless.
Nicola Lavin, aka , is our Travelette of the month.
I first discovered you on a blogging Facebook group and was absolutely captivated by your beautiful website and content. Can you tell me a bit about your blogging journey?
Blogging for me started by accident. I never ever, thought I would ever have a blog. My dad was a journalist so maybe the writing skills came from him!
I was always a nerd and into science and so I trained in college to be a medical scientist to work in a hospital lab. I loved doing that, it was brilliant but I have always loved travelling. When I got Lyme disease, I was so sick that I became bed-bound and the blogging was just because I needed an outlet. It was I guess the only way I could get people to hear me.
Then, when I had my treatment in Germany, and I became well enough to travel, that’s when my focus kind of shifted to it more. I didn’t want to get rid of it – to be able to have such a creative outlet is amazing. I love it. I had spent too much time in my bedroom to do a regular 9-5 job again, so I now do 3 days a week in the lab and then I have the other 5 days for little short breaks and blogging.
Having those 3 days at work is nice as they are my most structured days when I can have the evenings to myself. The other days I can find myself blogging from 8am until after midnight – you just don’t know when to stop!
You’ve been really open about your illness on your blog – can you tell me more about that?
I suppose its such a huge part of my life because I’ve been sick for almost nineteen years now. Obviously I’m a lot better now than I have been, but I think the reason why I talk about it so openly, especially amongst travellers, is because we are exposing ourselves to these insects all the time. People aren’t aware that these infection-born illnesses are out there.
When I was in Montauk, I was just a happy student walking through the grass. I wasn’t even thinking that this could affect my life for so long or get to the point where I was so severely ill. I know you don’t have to be worrying about illness every time you are travelling, its just important to be aware of these things. If you catch it early, you can treat it early and it won’t affect you the way it did me.
Lyme disease is one of those invisible illnesses where you can look OK on the outside but you can be really ill on the inside. It’s important to have people to speak up for it and be aware that just because you post a pretty picture, it doesn’t mean that life is perfect on the other side of it.
You mention that it’s an ‘invisible’ illness. How have you managed to cope with that challenge?
That’s the hardest part. I really honestly don’t think you can explain to anyone just how bad the bad days are. On the outside you may look perfectly fine and I suppose its very hard to sympathise with someone when they look fine. You just have to take their word for it that they’re not.
If someone has broken their arm and have a cast on, you naturally sympathise with them more than someone who simply says “oh my arm is really sore”. That’s the hardest part.
On the days when I felt well enough to take photos for Instagram, I would post them later sporadically from home. I may be in bed in so much pain at the time, but I would get comments from people like “oh it’s great to see you’re up and about and feeling well”. I guess only people with chronic illness will really truly understand how difficult that is, but that’s why I think it’s important to be real in the captions as well.
When I was in heart failure, I got so much sympathy because it was something that you could measure, that you could see. But I would go through that a million times over than go through the long-term symptoms because they were so horrific.
If you don’t mind me asking, how did you catch Lyme disease?
It was in the summer of 2000. I went to Montauk in New York with my friends for three months. I was a student, doing my final year of college and I wanted to do the whole ‘student thing’ before I settled into a long-term career. Lyme disease was quite rife over there but I didn’t realise it at the time. Nobody had mentioned it or warned us to look out for it.
So it was here that I got bitten by something – I wasn’t aware that it was a tick, I just had a bite under my arm. It was getting really red and irritated and angry looking and I just didn’t understand what had happened. I started to get flu-like symptoms and got really sick. I just put it down to picking up a virus and I continued with my last week in New York.
I flew home and went to the GP a few times but she said not to worry, it’s probably some sort of stomach flu I’d picked up. But because I was vomiting so badly at that point she decided to run a pregnancy test. It came back positive!
Everything was put down to my pregnancy. I had obviously never been pregnant before so I was like ‘OK I didn’t realise it was this bad!’ I thought to myself ‘I can get through it, it’s only nine months’. But then by the end of the pregnancy, I was in heart failure. It was a pretty traumatic time for both myself and my baby who had to be delivered over a month early. He nearly died, I nearly died, it was a very scary time.
After that, I recovered to some extent. Lyme disease is known for causing problems with your heart but they never looked for it or tested me. I continued my life struggling through for about nine years when I first had a test for it. At that point it was negative as the bacteria had hidden itself so well in my body!
It took a long time – I think I was 15 or 16 years sick before I eventually got the diagnosis.
Wow, you poor thing. Obviously it has affected your life massively, but what about travelling in particular?
I’ve always wanted to explore the world. I did even when Aaron was a baby and I wasn’t 100% well. I would take him everywhere. Then, when I was in heart failure, I remember my dad telling me “when you get better, pick out some holiday clothes because I am going to send you on holiday”. It was motivation to get out of hospital and do really well and do everything the doctors needed me to. I had been in hospital probably nearly four months at that stage and you sort of become institutionalised so just thinking about this holiday was enough to get me through.
When I was so sick that I was bed-bound – I couldn’t feed myself or even shower, that’s when Instagram would keep me motivated. I would look at these travel accounts and they kept my spirits up at a time where you could easily become so depressed and so down. It gave me a mental bucket list of all the places I wanted to go and all the things I wanted to do when I got better. And I’ve been slowly ticking them off!
I can still picture myself now lying in bed and seeing all the balloons at Cappocadia in Turkey and thinking ‘one day I want to go there’. To then fly there and to wake up and see all the balloons in the sky for myself – it was such an emotional experience.
My illness has made me appreciate things so much more. I most certainly don’t take things for granted and I don’t think I ever will.
On that, I’ve noticed that you are very positive on social media. As you say, for you when you were sick, Instagram was obviously a great comfort. Has that come into play with what you post on there?
Yes it has. I want to encourage other people with chronic illness – some who may not be as severely bed-bound, that you can still do it. I suppose you just need to know how.
I think positivity on social media is important. There’s no time for negativity or rudeness, we can all get along. Everyone has their down days and it’s OK to talk about that too but I think it’s important to just try and keep your spirits up. That helped me so much through my healing phase, which was a very difficult time. Just being positive and believing that it would work and believing that I would get out there to travel again, it really did help get me through.
So what advice would you give someone with Lyme disease or chronic illness who wants to travel?
What I do is approach my travelling in little batches. I’m not travelling constantly, I need time to rest in between and that’s really important. Your health is the most important thing. Just don’t push yourself and overdo it. You can still do it and travel of course, but you have to listen to your body.
It’s very frustrating when you have a trip planned and you go through a crash and everything you wanted to do you can’t. I would always factor in a few extra days either side of travelling so I have some time if I need to just put on my pyjamas and stay in bed all day.
What travel plans have you got coming up?
I don’t have anything major. I am going to the UK next week: Cornwall and the Cotswold’s again. I absolutely love that area of England, it’s so pretty! I’m also hoping to fit in a Christmas market, I’m just not sure which one yet. I definitely need to knuckle down and get some more trips organised in between but I also don’t want to push myself too much before Christmas.
So you do you have any future plans or aspirations for your blogging or are you happy where it is?
When I hit around 10,000 followers on Instagram I sort of felt the pressure of numbers and likes and comments. I thought, maybe my photos need to be better. I felt the pressure and competition and I ate myself up over it to the point where I could feel some of my symptoms coming back. It really wasn’t good!
Now, I just post what makes me happy, the things I want to share. I don’t really focus on the numbers any more and if it grows? Well then that’s amazing. I would like people to read by blog though because it’s a way to interact with people who can relate and gain something from it. But now I have no interest in having followers for the sake of followers.
What would you say is the biggest thing you’ve learnt from your illness?
Lyme disease has changed my life but I’m grateful for it because it gave me the opportunity to become a more compassionate person. I feel really aware of how amazing this world is that we live in. I don’t want to take a single day for granted.
We can get so caught up in the rat race – buying a home, having children, all the things we’re ‘supposed’ to do. Ultimately, you have to do things that make you happy and not worry about the rest. Your health and happiness and being positive about what you have, is the most important thing in the world.
Thank you so much for taking the time to talk to me Nicola! Make sure you follow her blog and social channels that you can find below.
– – – –
