Campervan adventures with a chronic illness

Oct 14, 2024

One of my favourite things to do is to explore new places and to go on adventures.

Travel has always satisfied this need to explore. I love it all. Trying out new foods, learning about the history and culture of a place, absorbing all the amazing scenery around me. I’ve been incredibly lucky in my lifetime and managed to travel to all corners of the globe. I’ve been to Europe, Japan, Australia, America and even lived in the Canadian Arctic for a time!

However, when I got diagnosed with Ankylosing spondylitis (AS), I thought those days would be over, or at least become incredibly difficult. I worried that the disease would steal yet another part of myself.

However, over this past year, since my diagnosis in January, I’ve made it my goal to continue to prioritise exploring, so I can still satisfy my travel bug. I find it’s great for my mental health, it keeps life interesting, you learn new things, and it also pushes me out of my comfort zone, in a good way.

I’m going to be honest with you all, I often find travel quite overwhelming and anxious making at times. Life with an autoimmune disease can be tough, that’s no secret. There are some days where I am too exhausted to leave my bed, let alone leave my house. So why do it to yourself , you may ask?

For me personally, there was a time right before I got diagnosed where even the thought of leaving my house was a terrifying prospect to me. My thoughts would race. I would convince myself that I would have a massive flare up of my symptoms and fall gravely ill. I thought that people wouldn't help me and that I wouldn't be able to get back to the safety of my home in time. How would I describe to them what was wrong when at the time I didn't even know myself what was happening in my body? I would get so worked up over these thoughts that I would have panic attacks before I even set foot outside. I let the fear take over. It stopped me from enjoying life and completely stole my independence and confidence. I don’t think those closest to me knew the extent of it. I held such shame over how much I let it take control, that I didn't tell anyone, other than my husband.

I am still working very hard to gain back all that I have lost over the past few years, but for me, travel is a way for me to do that in a safe but fun way.

To me, travel is not just a nice vacation time. It’s a way for me to grab life back again. It provides me with a healthy challenge; to prove to myself that I can still do hard things even when they are a bit scary and physically tough on my body. It lets me escape the mundane. It gives me a break from the isolation. It reminds me that there's a big beautiful world out there beyond my bed. Overall, it’s a way of me saying a big ‘F**k You’ to fear. I’m not going to let you win this time.

Toasting to our first night away in the campervan!

Why a campervan?

My husband and I were in the position to be able to buy a VW campervan last year with some inheritance money. We thought long and hard what to do with that money. Should we do the sensible thing and pay off some of our mortgage, or should we squirrel it away for that rainy day? But in the end we thought, you know what, today IS that rainy day. Life is too short and we should enjoy things now. I have no idea what my health will look like in the future.

Together we’ve had too many reminders of the fragility of life, with several of our family members sadly not reaching retirement age due to illness. So together we decided ‘Why wait to live out our dreams, let’s go on some adventures now’. We turned the incredibly sad loss of Will losing his mother, into something special. We bought our beautiful VW campervan and named her ‘Carol the California’ as a tribute to his late mother who left us this generous gift. I think she would be so happy to know we're celebrating her adventurous spirit in such a way. Here's to you Carol 💓 We feel she blesses each one of our adventures and keeps us safe.

So far we have explored many parts of the UK, and earlier this year we took her on a ferry to Jersey. She was even part of our wedding, and back in April we spent our honeymoon in the campervan in the idyllic Lake District.

Carol still managed to be with us in spirit and be part of our big day

Next year we hope to take her further afield to Europe (if I’m feeling ready), but our latest adventure took us to Scotland (tune in next week for how that turned out!).

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For me personally, a campervan is the most perfect way to travel with AS, and below I explain a few of the reasons why:

We have lots of storage space and everything is within easy reach. I can have all the stuff I need around me to make me comfortable. I don’t have to carry around heavy bags or suitcases. We have these IKEA collapsible storage boxes which are great for extra storage which we shove in the back.
Heated seats which are glorious when you start to get that lower back ache.
You essentially have a bed on wheels, so whenever I get a bit fatigued we can pull over and easily set up the bed for a quick rest and nap.
You can get closer to nature. I love all the fresh air you get whilst camping. My body and mind feel better for it. I get to see things that I would miss being in a hotel, like watching the stars on a clear night, or hearing and seeing all the different types of wildlife.
Who can spot the big dipper?
We bought an extra mattress to go on top of the one that was provided in the campervan, so there is very little pain in my hips and back at night. I’m pretty much guaranteed to have a good nights sleep, which isn’t always a given at hotels in a different bed to your own.
Our particular campervan has a fridge built in, so we can store plenty of fluids and snacks to keep me hydrated and fed. I can load up on my gluten free and dairy free alternatives, which I may not be able to find when we’re away. It will also be very handy to store my biologic medication in the future which needs to be kept in the fridge.

We store a Thetford Porta Potti on board in case of emergencies. If you have IBS/ a tiny bladder like me, just knowing it’s there takes so much stress away. We can easily pull over wherever we are, pull down all the blinds and have complete privacy.
You can keep relatively germ free and socially distant from people if you so choose. For example, Scotland has some amazing park ups and wild camping spots; you literally don’t have to be around another soul if you want to keep away from germs, especially if you are worried about your immunity levels being on biologics etc.

We love to get take-out and eat in the van, away from the noise and overwhelm of busy restaurants. We’re always guaranteed a good table with a view!

You have the freedom to be spontaneous and plan around your fatigue levels. Most campsites don’t need booking weeks or months in advance like a lot of hotels or B&B’s do. There is the option to wild camp or stealth camp as they call it, but we mostly stick to campsites so we have access to electrics, water, showers etc. A lot of the campsites we have visited have great accessibility e.g. disabled bathrooms/wet rooms, good pathways to the facilities, lowered sinks for washing up if you’re in a wheelchair etc.
There is a pull out table inside which I can use as a handy desk. This was my latest set-up catching up on a few Substack comments.
Office with a view…
One of the best features of having a campervan i.e a home on wheels, is that when I’m feeling overwhelmed or in need of a rest, we can just close the blinds and shut out the chaos of the world. I can rest up, make a cup of tea, have a little snack and feel refreshed. I don’t have to wait until I get back to a hotel or back home. The comfort of home is always in reach. Which is great for a massive introverted person with an autoimmune disease and major anxiety that often overwhelms her (who me?).

What are the cons?

Now of course the most obvious one is that not everyone can afford a campervan. I am fully aware we are super privileged in that respect. Travelling in general can be expensive, but you can do it on a budget. There are plenty of companies that rent out campervans. I would highly recommend, at least once in your lifetime, to go on a campervan road trip. It's such fun. There is a whole culture and community around it, other people with campervans wave and smile at you as you pass each other by. It's like being part of a club.
It can take a lot of preparation, but I find this would be the case whatever form of travel I took. This is getting easier over time though. I make lists and spread out the packing over a week so I don't exhaust myself. A lot of things we keep packed in the van, so all we need to do is pack a few last minute bits and we're off.
Setting up the beds and moving around in such a tight space can be a bit physically draining at times. The key is just to give yourself plenty of time and mini rest breaks along the way.
It’s very dependent on the weather. Obviously things are a lot easier in the summertime. When it's cold and rainy outside it can limit what you do, but when the weather is a bit crap, we snuggle up, put our mini projector up and watch a movie to pass the time. Camping is a great way to reset, slow things down and spend some quality time with your loved ones. There is something so cosy about hearing the rain falling outside when you're all wrapped up warm inside.

We put the projector screen up in the pop-top roof for a cinema-like experience. Grab the popcorn!

General tips

Don't book too many things in one day. Give yourself plenty of time to rest in between activities. We try to keep plans as loose as possible as my energy levels can fluctuate so quickly. Remember travel is not a tick box exercise trying to cram in as much as possible. The aim is to enjoy yourself. At first I would feel so guilty that we couldn’t go and see everything. I had major FOMO. But slowing down and really enjoying one or two things actually made the whole experience so much more relaxing. Isn’t that the whole point of a holiday anyway?
Plenty of stops to stretch. Sitting in the car for long periods of time can be absolute agony on your joints. Factor in some stops along the way and have a good stretch to ease the pain.
Stock up on food, water & fuel where you can. Especially in remote areas like in the Scottish Cairngorms or Highlands. You do not want to run out of fuel in the middle of nowhere in the mountains. That would be one cold and windy walk to a petrol station!
Pick your travel companions wisely. Only go with people who truly understand your needs. Explain to them that you may need to take things super slow and gentle. You don’t want people that make you feel bad or guilty if you need to change plans last minute, or take a nap during the day or when you don’t want to walk aimlessly around the shops all day. You deserve to have a good time too.

I know this is quite niche, but I hope you found it helpful all the same. I guess I wanted to show people that even with a chronic illness you can still travel. It may just have to look a little different to what you did in the past, or what other people do. I wanted to show people that you can still get out there and enjoy yourself. It may take some extra preparation and planning, but I think it’s worth it.

At first I was so worried that my symptoms would flare up and I wouldn’t enjoy myself, or I would let my husband down, or a million other reasons why I couldn’t do it. But eventually, my overall thinking was, if I’m going to feel like shit all the time (which is pretty much guaranteed these days), I may as well feel shit in a place with a great view! If I can’t change my body, then I need to change my way of looking at things. I can’t always wait until I feel better to go and do something now. I may just have to expand my definition of travel and to find a new way of doing it, in a way that suits me.

For me, it took some time to build up the confidence to do it, but it’s improving with each trip I take. Do I sometimes flare up and get sick whilst away? Yes. But we adapt and deal with it. We still manage to have a good time once we take the pressure off. Do we get to see as much as everyone else? Probably not. But my new thinking is, something is better than nothing.

When I get back from a trip I do often feel more tired, but I think the pros outweigh the cons. Sometimes I have to do things which physically exhaust me, but are great for my mental health and spirit. I get so lonely and isolated being stuck inside my home all day and travel has been a great way of breaking that cycle. Now I plan in rest days after we get home to help balance it all out again.

So if you are on the fence about taking a trip, I encourage you to give it a go. You might surprise yourself. Try something small, like a weekend away and build up from there. And then let me know how you get on! I would love to hear your travel stories.

How about you?

Do you find travelling hard with your illness? Have you tried a campervan holiday? Are there any places you would recommend to visit? Or do you have any tips you want to share? I would love to know in the comments.

Oh and feel free to message me if you want further details about campervan travels in particular. I have loads of good tips, lists of campsites (in the UK) and equipment recommendations if you want them. Too many to list here!

In my bones...

Campervan adventures with a chronic illness

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