What Chronically Ill People Do On Holiday...

And how much it costs us both financially and emotionally.

I begin writing this from my caravan bedroom in Dorset. It's 29 degrees inside this room, some six degrees hotter than the temperature outside. It's the second week of the school summer break and I'm here on holiday with my children, my mum, my sister and my niece.

I've been here since Monday (it's Wednesday as I write this) and so far I've been outside of this caravan only twice. My husband drove me and my daughter down on Monday afternoon, before he had to return home for a few days. After he'd dropped us off I had to take myself immediately to bed. This happens on every trip. Travel is an agonising process for me, for many reasons, I'll do my best to explain a few of them.

If you've been following along for a while, you'll know I have PMDD, a cyclical neurohormonal disorder that includes symptoms ranging from all over joint pain to suicidal ideation. The day we traveled down was the last day of my cycle, ergo PMDD in it's most acute and treacherous stage.

If feeling like your body has been hit by a truck, while your brain tells you you'd be better off dead isn't enough to ruin a holiday, I also have chronic migraine (including unilateral hemiplegia), functional neurological disorder, fibromyalgia and I'm neurodivergent.

I can't list each symptom for each disorder because we would literally be here for the next two years, but allow me to try and convey what was happening for me on the drive down on Monday: Motion sickness, hot flashes, excruciating menstrual cramps, anxiety, reduced hearing function with heightened sound sensitivity, visual disturbances, oedema and partial numbness on the left side of my body. All while riding in the back of a car, on a journey that should of brought excitement.

When I arrived at our destination I was doubled over in pain, sick from the motion, tingling all over, overstimulated by every sound and sight (despite my desperate attempt to block these out on the way) , while genuinely believing it would be better for everyone if I wasn't here anymore. On earth. That way, perhaps my loved ones wouldn’t have to keep enduring the ripple effect of my sickness.

The usual excitement that might behold someone off on their summer holidays is not something I am privy to. At least, not in the last decade. I don't get to enjoy car discos with the kids on the way because I'm masking for dear life and praying to the digestion gods that I don't vomit in the foot well.

What will come as no surprise to people with dynamic disabilities is the fear of doing anything that might exacerbate my symptoms. Being a passenger in a car is one of those things that can, does, and did, send my body flaring.

Travel may be a minor part of the holiday experience if you're a non disabled person, but for me it's a huge obstacle, that must be overcome and then recovered from, before I can even begin to think about enjoying any of my time away.

I've skipped a whole section on packing for holidays when you're disabled because it's rather boring, but if you know about prescription filling, and lists that include all possible scenarios, (multiply worst case scenarios by the number of kids you have if you're also a parent) then you know… that it doesn't scream ‘vacation’.

The psychological cost

If the above wasn't clear enough, the guilt that comes with feeling like you're constantly letting people down when you're on holiday is a heightened sense of being burdensome, compared to the usual (daily) feelings of this nature.

Firstly, I felt guilty that my cycle fell on the week we were away. I try very hard to plan around this but it's not always possible.

Secondly, I felt shame and disappointment that my mum and sister had to do all of the evening entertainment with my kids. Evenings are hard for me anyway but they're even harder when I've been out during the day. On Wednesday I went to the pool for under an hour with the kids in the morning and had to spend the rest of the day in bed.

Thirdly, I felt guilty that when my husband drove down Wednesday afternoon to spend the last couple of days with us, I was in bed when he arrived.

Aside from the guilt, I also felt emotionally gut-punched that I missed things like, watching my daughter win a prize for holding a parrot on her head and my son getting a certificate for being the best dancer.

Then comes the internalised shame and feelings of not being upto scratch as a parent because of how much I miss. I know presence is so important for children, missing those moments is a dagger to the heart. It's difficult then, not to project feelings of shame and guilt when I do manage to show up to things. Particularly if I'm feeling well but perhaps one of my kids isn't having the greatest day. I noticed this one afternoon when we decided to try the beach and my son was exhausted, disengaged and hard to please. In my head I felt cheated out of time with him, because I had already missed so much. Thankfully, I am self-aware enough to know he has his own emotions, his own social battery and his own feelings of exhaustion that have nothing to do with me, but it doesn't stop the thoughts niggling away.

On top of all this, being neurodivergent means my nervous system is constantly overloaded by stimulation. I'm hypervigilant to everyone's energy, then there's the sensory stress that comes with a change in environment and so on…

The Financial Cost

My mum paid extra for a accessible caravan for me that was separate from her own. I need my own room because I spend so much time in there, (something I couldn’t have in a caravan with everyone). Without a lone space to retreat, particularly during the worst of my symptoms, it's impossible to recover. This, unsurprisingly costs hundreds of pounds more than if I was able to share the same caravan as my mum and sister. This price goes up even more if you are wheelchair user and need an adapted caravan.

Then there's the very reality that my mum paid for four days vacation for me and I was only able to actively participate in approximately twelve hours of said vacation. Sure, you could argue that some people would choose to spend their vacation resting anyway, but I'd counter that with not choosing the exponentially more expensive summer holidays to do so.

Booking day trips and then having to cancel last minute. Not just a holiday problem but an ongoing problem for chronically ill people. We don't know when our symptoms are going to flare up and leave us bedridden, but businesses almost always require at least twenty four hours notice to cancel. While I appreciate the logistical business reasons for this, it's also really hard when you're a person living day-to-day. Either you don't plan anything and leave yourself with nothing to look forward to, or you plan in good faith then have to cancel and ultimately lose money. Even on the odd chance that said attraction offers cancellation insurance, this almost never covers existing conditions.

There are insurmountable costs that come with being disabled and I've barely scratched the surface listing the above, however I hope it highlights the fact that disability tax is real.

Why bother with holidays at all?

These last paragraphs may feel a little contradictory but I'm going to share anyway, because a lot of being disabled is constant contradiction. The reason we still book holidays, still attempt to enjoy them (and absolutely should not stop doing so) , is in part because hope is a powerful drug to cling onto, and then there's hope with a dynamic disability. Hope that you will actually be able to enjoy the things you book and pay for. Hope that your symptoms will be mild enough to catch a few epic views. Hope that your bad days might coincide with bad weather and you won't feel as shitty about being holed up in a caravan if it's raining.

Then there's the things we experience that other people miss. I'm not saying this is a pro to being disabled but it's part of the experience that I hadn't noticed when I was more able. Things like: observing and absorbing the joy on your children's faces as they splash around in the shallows, and being more open to the beauty that nature exudes.

I don't think during my more able-bodied twenties that I would have given a toss about cheetah-like markings on a beach rock, but I do today. “Small wins” feel like a cliché but they really are the big things when you can't do the big things anymore.

The day before we travelled home I made it onto my favourite pebble beach and even stood in the shallows while the water glistened and waves crashed against the rocks. I absorbed it all. I tuned out the shrillness of other holiday makers and I appreciated the warmth of the sun on my body. I didn't care what I looked like, because why does it matter what I look like if I feel good being able to do something I don't often get the opportunity to do?

I’m at a stage in my life where I have to weigh up my grief with gratitude, I have to appreciate the beauty in the little things because if I don't, I won't survive my worst days. This isn't an ode to my ill health or a pledge to always remain positive, instead it's a realistic view of a life that I am still living. It's my way of holding space for the good that is left. It's acceptance of my current situation and appreciation for all that remains.

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