My Weekly Lupus Diary

Travelling With Lupus

I’m back! Honestly, I do not know where the last few weeks have gone! We had the most epic honeymoon we could have ever dreamt of! It was perfect in every way! Even the wolf behaved for the whole 3 weeks, despite hiking in bright sunlight, going to bed late, and getting up early. There were just so many factors that could have pushed him over the edge, but he didn’t bite back. Not sure why, but I’m not complaining, just grateful.

Route 66 was amazing! We spent 3 weeks doing the route with detours. We drove just under 4,000 miles, passed through 10 states, completed one of America’s most dangerous hiking trails, saw 2 rattlesnakes, met some of the most humble people, boiled to death in the Mojave desert, encountered wildfires, avoided a shooting, got caught up in numerous dust storms, and on top of all that, we created some of the most precious memories ever!

Here’s some of our precious memories in pictures:

Every time I travel, I always get asked loads of questions about travelling with a chronic illness, which is why I decided to dedicate a full chapter about it in my book, ‘How I Tamed the Wolf’. But since writing my book, I’ve had a lot of new questions asked, especially about the whole Covid situation and food options. So I’m going to answer three of the popular questions I have been asked over the last few weeks on here. If you do have any questions I haven’t covered on here or in my book, please do feel free to ask, I’m always happy to answer!

How did you manage to protect yourself in the desert?

Every day, even on cloudy days, I wore factor 50 and my sun hat. On the days I was hiking, I wore my checked shirt to cover my arms, so less skin was being exposed to the sun.

With all this protection, I stayed feeling well and only came home with a very faint rash on my arms. So happy!

What was the COVID situation like in America?

America is no different from how it is here in the UK. Mask wearing was optional, except in the Navajo region where mask-wearing is required. In fact, they are very strict with it. They won’t accept any mask exemptions. They say no mask, no entry to all shops/restaurants/etc. Testing-wise, we did have to have an LFT test within 24 hours of flying, but from today that has now been scrapped. Hotels, some don’t do housekeeping because of Covid rules, and most rooms had anti-bac wipes in, in case you wanted to wipe everything down in your room.

Been open and honest with you guys, I was happy we didn’t have to wear masks, that it was optional. Everything felt normal again. Travelling internationally was a massive part of my life pre-pandemic and it’s something I had missed so much over the past 2 years. This trip felt like I had my life back again. It was something I had taken away from me, that I knew I missed but didn’t realise how much I missed it until I was reunited with it again. For the first time since early 2020, I feel like I have my full life back again!

I may be at a point in my life where I now feel comfortable to live a normal life again with Covid being out there, but I understand not all of you will feel like that, and that’s ok. There’s no right or wrong way to be. When we were travelling around America there was a mixture of mask-wearing. There were some people who didn’t want to get into a lift with anyone else, and there were some people who would keep a good distance in queues. No matter how cautious you want to be, it’s ok.

How did you find the food in America?

Honestly? A nightmare! You would think, out of all the countries to visit, America would be the best place to cater for food dietaies. Places like LA, Vegas, and Palm Springs weren’t too bad, it was more on the road travelling through remote places, passing family run, old American dinners, where the problem was. I was having to ask for pizza with no cheese on, bagels toasted but with nothing on top. The big chain restaurants didn’t seem to have any vegan food, or not in the cities/towns I visited. Guess there just isn’t a demand for it in the area I visited? We even tried the Mcdonald’s and Burger King in the City of Page, thinking that was a safe bet since they do a good plant-based menu here in England. Not a single plant-based option! I guess very few people in the Arizona desert eat vegan food? On the plane, I had requested vegan meals. Alex got a lovely, big slice of cheesecake with his dinner. I got a bowl of fruit that I couldn’t eat because it was too acidic for my stomach!

Travelling and being on a restrictive diet isn’t fun! I literally spent 3 weeks living off watermelon, plain bagels, vegetable pizzas, and avocado. Never eaten so healthy on holiday before! Well minus all the Oreos and Pop Tarts I ate! If you ever go to America, you need to go to Walmart. It’s a must! The choice of flavours of Oreos and Pop Tarts they do are amazing! The Carrot Cake Oreos are currently my favourite.

On a serious note, I need to talk to my Gastro about this and how awful it was for me! I really don’t want to be on this restrictive diet on my next holiday! I know I probably always have to avoid dairy but that’s manageable if it’s just one thing. It’s the rest I can’t cope with! Part of travelling is enjoying the food! Especially when you are travelling to America. They do all the best food!

Please, don’t let my food experience put you off from travelling. I find it hard to find food at home, so it’s not surprising I found it hard in America. I currently have a lot of problems with food. I’m lacking a lot of stomach enzymes due to my high dose of PPIs. This has created a lot of food sensitivity. I also suffer from a lot of acid due to all the medication I take, which means I have to limit the amount of acidic food I eat. I’m hoping both of these problems will be able to get sorted with my Gastro.

I hope my answers have helped any questions you may have had. If you do have any more, please feel free to message me. Next week back to reality with all my medical appointments. Bloods on Wednesday, eye hospital appointment on Friday. I’ve got my liver ultrasound at the end of the month, and I’ve got my letter through for my yearly smear test. I knew I should have stayed in America! Travel is the only time I get to escape from it all! Maybe that’s why I love to travel so much?

Until next week,

Goodbye for now

Emma

xox

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My book, How I Tamed the Wolf, Living with Lupus is available on Amazon via this link:

https://www.amazon.co.uk/dp/B09M73X2JQ/ref=cm_sw_em_r_mt_dp_MWAF58981F0VVMNRV1WN

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