#7 Travelling with a chronic illness
The ups and downs of travelling with Ankylosing spondylitis...
This isn’t really a ‘how-to’ article, it’s more me trying to come to terms with not being able to do what I used to love, which was to travel. Before I got sick, I had travelled all over the world. I also lived abroad for a time, so I felt I was a bit of a seasoned pro. I loved to explore new places, immerse myself in the different cultures and try out the new foods. But now the thought of travel fills me with a mixture of fear, unease, grief and guilt.
My husband and I recently went on a little trip to Jersey in our VW campervan. It was just for a week and we did everything we could to make the trip as easy as possible. We booked the ferry somewhat last minute, so we could keep an eye on my pain and fatigue levels and not book if I felt too awful, to save having to cancel anything. At the time of booking I felt ok. We also packed everything to make our stay comfortable; stocked up on my medications, hot water bottles, comfortable pillows etc. The good thing with having a campervan is you can literally pack whatever you need, a home on wheels!
We planned in rest days in between activities, so I wouldn’t get too fatigued. We did our research and chose places that had short walks from the car park, and planned to visit quiet nature spots instead of busy tourist areas which usually overwhelm and drain me. We packed some of my ‘safe foods’ e.g. gluten free, in case we couldn’t find any on the road. I also rested for days before the trip to gather my strength so to speak. I did everything I could think of to make the trip ok, but still I felt my body let me down.
A day or two into the trip I had a flare up. The pain and fatigue reared its ugly head and even though I prepared for every eventuality, it still happened. I find this one of the hardest things to get my head around with this disease. You can do everything you are supposed to do, but still flare ups happen. In these moments I can’t help but to blame myself, which I know is silly and counterproductive because it’s not my fault that I’m sick, but I can’t help it. The pain feels like a constant reminder of my new limitations. If I was at home I would have just admitted defeat and rested and told myself that it would pass eventually. But whilst travelling, I felt I couldn’t do this. It was harder to control my environment. There was too much change to deal with. My routine was too out of sync. I felt like I had to ‘soldier on’ and push through it, otherwise our trip would have been ruined.
I also didn’t want to let my husband down and ruin his trip that he had been really looking forward to. He has had a pretty rough time of late with illness in the family, job redundancies and of course the extra responsibilities he’s had to take on since I’ve become ill. I really wanted him to be able to switch off and have a lovely holiday. So that’s where the guilt aspect of travelling with a chronic illness comes in. The whole trip I felt horrendously guilty that I was letting him down. That we couldn’t even have a week away without my illness tainting everything. I was putting way too much pressure on myself to have the perfect time. He of course told me not to worry, rest up, and that it was ok, but I could see the disappointment and sadness in his face, and I hate that more than anything. I can somewhat get my head around my life being changed with illness, but I can’t bare the thought of his life being so greatly impacted by it. It seems so unfair. It feels so selfish that it has to be about me and my illness so much of the time. I feel like I'm always letting people down lately and it can really knock your confidence.
It wasn’t all doom and gloom. We did manage to have some lovely moments on the trip which I am thankful for. We got to see some beautiful scenery, the seafood was amazing, the weather was perfect sunshine all week and the people of Jersey are just so kind. I’m just sad that whenever I look back at the photos we took, they will always be tainted with the memories of pain, fatigue and feeling like a burden.
I’ve included some photos below to show you that it may look all sunshine and smiling faces, but it’s not always what it seems. It just goes to show that some illnesses and disabilities really are invisible to the outside world, but can cause so much grief on the inside. We really need to be mindful of this when we speak to others, and be kind, because you really just don’t know what others may be going through. People say they understand, but I'm just not sure they really can until they are going through it too.
This photo was taken at the absolute peak of me feeling like shit. Every single bone in my body felt like it was on fire, my eyes had literally gone blurry from pain and fatigue, my legs felt like cement, I was pale and felt like my heart was pumping out of my chest, I felt dizzy and nauseous, I was quite scared at how bad I felt, but still I’m trying to smile through gritted teeth and pretend that everything is ok. That evening we went back to our campsite and I just cried and cried. I felt so awful both physically and mentality. I just couldn’t hold it all in anymore. I just couldn’t pretend. It was like a new wave of grief had overcome me, the realisation hit me that I just can’t do what I used to do. I used to love hiking and walking, but now climbing up a slight incline had me in tears.
Even the photos we took at the start of the trip in Dorset, I see that I’m leaning and sitting on anything that I can find to get relief, and of course carrying my trusty water bottle with me wherever I go.
One of the days, we had a lovely time at the beach and I really enjoyed laying in the sunshine, putting my toes in the white fine sand and hearing the lapping waves, laughing at the seagull that had his head in my handbag trying to steal my cake! I’m trying my best to hold onto those precious moments. But still, I can’t help but to have a tinge of sadness when I think back on this day. My husband was swimming in the sea, but I was too fatigued to join him. I saw other couples on the beach, running into the sea together hand in hand, and I just wished that I could do that with my husband. I wished that I could give that to him, that perfect moment together. I just couldn’t help but feel like I will always be holding him back in some way. He will always have to do more things alone, whilst I just watch from the side-lines. I feel like I can't participate in my own life at times. Like I'm more illness than a person.
I know that we will learn to adapt, and still have our ‘perfect’ moments together, but on those days where pain and fatigue wear you down, it’s so hard to look on the bright side. I know that if you asked my husband, did you have a good trip, he would say of course he did, but there will always be that annoying voice in the back of my head that says, he’s just saying that to make you feel better, or I bet he wishes he took someone else instead of you.
I’m sorry if this felt too negative and I don’t want to scare anyone off from travelling of course, but I think it’s important to show the real and raw side of illness too. It’s not always easy to put a positive spin on things. Sometimes I literally don't have the energy to pretend. I wanted to be honest and in doing so I hope that someone can relate out there, and in someway actually feel better because they know they’re not alone in their feelings of sadness.
Having a chronic illness can sometimes feel like a constant cycle of grief. It's such a steep learning curve trying to get to grips with all of this. I just get so frustrated that every action I do, it always has some kind of consequence down the line. I have to constantly juggle which activities I do/don't do, so I can do something else later. For example, I didn't wash my hair for days, even though it desperately needed it, in hopes it would save energy for something else. Or the fact I had to choose only one place to visit each day and miss out on others I know we would have enjoyed, to save my energy. It feels like the disease is constantly limiting my potential, making me feel less than. Feeling trapped in my own body. Dimming my light. Which ever decision I make, It feels like I'm always missing out or letting others down.
I don’t want it to stop me from travelling in the future, or stop me from living my life, so I’m just going to ride out this cycle of grief and try again another time with more adaptions. I've learnt over the years you need to allow yourself to sit in the sadness for a bit, have a sulk, feel angry, feel the feelings, then try to move on. If you rush this process, the grief gets stuck in your body.
I also think I have way more ‘ inner work’ to do with the mental load of having a chronic illness. I need to learn to forgive myself when I’m feeling ill. Give myself permission to rest more, and manage the expectations of both myself and of those around me in what I’m able to do these days. It's not just me that's going through change and a cycle of grief, it's also the people around me. My husband also needs the time to process what's happening and I need to allow him to feel his feelings too. Even if that makes me feel a bit vulnerable at times. Only honest and clear communication can do this.
I also feel I need to focus on the things I did manage to do on this trip and celebrate those wins, instead of beating myself up for all the things I couldn’t do.
So I will leave you with a photo of me on a beach in Jersey, where I actually had a moment of feeling pretty good. Even if it lasted only a few hours, it was still one of those ‘perfect’ moments which I will hold onto.
How about you?
Do you find travel difficult these days with illness? Have you found good ways of coping or adapting? Do you have days where you feel like a burden on your loved ones? How do you cope with those feelings? I would love to know.
Thanks for reading. Sending you all healing thoughts.
Lots of love and hugs,
Amanda x
It's great to read that you had a good trip despite and with your chronic illness. You prepared it all so well!
What I have learned over the years is that I will not allow my chronic illness to force me to stay at home as easy as it may seem. Unfortunately, travel with an illness can mean extra costs.
Obviously, I double, triple check the accommodation so that I have a place to withdraw and rest, if possible can prepare my own meals or have take-out or room service. And I always bring a small electric blanket (with adapter for strange sockets).
As my family lives on different continents, we set up a savings account some years back for any extra cash that may come my way. Not much but enough to enable occasional business class upgrades when we went on long distance flights. It makes a huge difference.
When we travel with fixed dates we take out a travel cancellation insurance. This is a bit of a minefield as very few insurance co. accept a chronic illness flare as an unexpected reason for cancellation but there are some willing to provide cover, especially if you can get your doctor to certify that a flare up is not a regular event and that your chronic illness is otherwise under control and medical supervision is regular. It can be cumbersome and even humiliating to negotiate insurance terms when you are chronically ill but I can assure you you'll get the hang of it and can become fairly assertive along the way.
But I admit that travel can be stressful, so not many big trip abroad. Instead, I concentrate on day trips, local events and sights and there is still a lot to discover if you make a day of it with all the trimmings. I am lucky that I can enjoy riding an e-bike. I wonder if that's an option for you? Maybe try it out, there are very nifty three-wheelers available, where you can sit very comfortably and the effort of pedalling is almost nil. At one stage, when I was really under the weather, we hired one of these bikes where I could just sit back and my partner cycled for the two of us. It was a gorgous trip on a hot and sunny day.
All in all, getting to be outside every day if possible makes all the difference for me and I hope you can enjoy this as well. Even if it's sitting on a deck chair with a cuppa listening to the wind and the birds.