Hi my name is Lottie, I’m twenty-seven years old and living with Lyme Disease. I have a Master’s Degree in History from the University of Edinburgh in Scotland and I was studying Post-Graduate Law before I got sick. I’m passionate about human rights and immigration law and my dream would be to be able to return to my studies. I love being outdoors, especially in the sunshine, and am obsessed with animals. I’ve been married to my Husband Alex for two years and we would love to get a dog once my health is more stable. In May of this year I travelled to the US to do Stem Cell therapy for my Lyme Disease and I am very hopeful that this will get me back to better health and quality of life.
How long have you been a chronic pain warrior?
I became very unwell very suddenly in the summer of 2015. I started suffering with POTS symptoms (vertigo, fainting, blood pressure & heart problems) as well as developing over 80 food allergies, joint pain, fatigue and severe neurological symptoms. I was diagnosed with SIBO (bacterial overgrowth) and Mast Cell Activation Disorder, but it wasn’t until early 2017 that a doctor thought to test me for Lyme Disease, which explained the cause all my other conditions and symptoms.
What made you start your blog lottielyme?
I decided to start my blog for a few reasons. A year after getting Lyme I lost the ability to read and write, as the bacterial infection had invaded my brain and caused neurological damage. I also had issues with my vision, and struggled to process information and communicate. So when I gained back my ability to read and write after treatment this year I started keeping a journal and quickly found it was very therapeutic to document what I was going through and how I was feeling. Coming from a background of academia, I found it very traumatic to struggle with such severe neurological problems and I will never again take my brain for granted – starting a blog seemed a good way to honour that and celebrate how far I have come. I also wanted to set up a blog because there aren’t many resources out there for people suffering with Lyme Disease in the UK. The NHS does not recognise or offer adequate treatment for Chronic Lyme, and getting a diagnosis can be difficult because of a lack of awareness of the disease, so any small bit I can do to offer information and awareness to others I am very happy to. I know how isolating it can be to suffer from chronic illness and to feel like you are alone in your struggles, so I hoped that others might be able to relate to some of what I go through and feel connected in that way. Lastly, when I was deciding whether to do Stem Cell treatment I relied a lot on blogs of past patients’ who had documented their experience throughout the process, and I felt like it would be a really positive thing if I could give back to the community by sharing my own journey.
What part of the world do you live in?
I live in London in England. I absolutely love living in the city and being able to access so much on my doorstep, but I also love nature and need the peace and quiet of being somewhere less hectic, so we live right next to the river and a beautiful park, which I try to get to every day that I feel well enough. Being next to the water helps keep me calm and keeps my soul happy on days that are a little tougher. I’ve lived in London for three years and sadly haven’t been able to explore as much of it as I would have liked to because of my health, but the last six months I’ve started to do a little more and that has been wonderful.
What is the accessibility like in your local area?
I would say it’s pretty good in relation to other places in the UK. Because a lot of buildings and roads in London are so old, accessibility for wheelchair users can be tricky, and pavements are often narrow, uneven and hazardous, so compared to a lot of places in the States it’s not great. However, I’m lucky to live right next to a beautiful big park where I spend a lot of time, and my apartment building is a new build with a lift which is great. I have just recently started going on public transport again as my POTS symptoms have improved, and I have a disability badge from Transport for London which means I can always get a seat, which is invaluable in helping me get around.
If a fellow warrior was visiting your local area, what places should they make sure they visit?
London is such a green city and has so many beautiful parks which are mostly flat and easy to get around. Hyde Park and Kensington Palace Gardens are my favourites and it’s really good to get fresh air as central London can get very polluted. London has so many great allergy friendly cafes and restaurants as well – one of my favourites is the Deliciously Ella Café is amazing, Ella suffered from POTS herself and everything is vegan and gluten-free. The Ham Yard hotel also does an amazing English afternoon tea which is gluten, dairy and sugar-free. For culture, the Tate Modern is an incredible gallery which has really good accessibility, allergy-free food and an amazing view across London from the roof terrace.
If you could fly anywhere in the world where would it be and why?
My dream destinations are Japan and Bali. I’ve been lucky enough to travel to a lot of countries in Asia, and I’ve absolutely loved all of them, so Japan and Bali are top of my list. I have always wanted to go to Tokyo because I’m just fascinated by Japanese culture and Sushi is my absolute favourite food, and I would love to go to Bali as I want to experience the health-focused side to the island, the vegan food is supposed to be amazing and I would love to go on a yoga holiday there.
Where’s your favourite holiday destination?
My favourite holiday destination is Vietnam or Greece. I spent six months in Vietnam between school and university and fell in love with the people, the culture and the scenery. Greece is also a really special place for me as I went on my honeymoon to Mykonos, Santorini and Athens and it is such a stunning and chilled out place to go for a really relaxing holiday.
What’s your best travel tip you could give to your fellow warriors?
Be as prepared as you can, feeling organised makes me feel so much less anxious about travelling, especially when it comes to flying. I make sure I have everything I might need in case of a flare or symptoms – medications, essential oils, allergy friendly snacks and noise cancelling headphones, and I always wear my anti-pollution mask to make sure I don’t get sick from bacteria or germs on the plane.
My husband is Australian, so I’m used to flying long-haul between London and Australia, and then recently I’ve flown a lot back and forth to LA for treatment, so I have developed a good routine to cope with such a long flight over the years. Making sure I am as relaxed as possible before travelling really makes a difference in how much I enjoy myself once I get to my destination, and if I’m prepared for flare-ups then it means my health is less likely to ruin the trip.
What is your biggest bug bare when travelling?
Probably the difficulty in eating out if restaurants don’t understand or take food allergies seriously. I always carry a medical card with my allergies listed in the language of the place I’m visiting, but sometimes restaurants still don’t understand or the request can get lost in translation. I find that it can create quite a lot of anxiety around meal times as I’m worried about having a severe reaction and having to navigate foreign hospitals. However, it’s all part of the challenge of travelling somewhere different, and I have to accept that things can just get lost in translation. When I was in Italy the waiter went to great effort to ensure my pasta was gluten-free but when he brought it out someone had put bread crumbs all over to garnish it – I had to laugh! I just make sure to always double check when the food has been served, and I usually get my husband to taste test as well.
What is the one thing you would like to change about people’s perceptions of your conditions?
That just because a lot of my symptoms may not always be visible, it doesn’t mean they aren’t there and aren’t extremely challenging. A lot of my worst symptoms such as nausea, tachycardia and intracranial pressure can’t be seen from the outside but can be completely debilitating. Sometimes people do stare when I wear my disability badge or mask because they can’t understand why I look ‘normal’ but need to take these measures, but I try not to let it bother me and instead just focus on myself and doing the best for my body.
You can find Lottie on the following social media platforms
Instagram – @lottielyme
Website – www.lottielyme.com