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A summer holiday with POTS


Photo: exuberantchildministries.org

For most people they couldn't think of anything nicer than going somewhere lovely and hot to chill out and go on little adventures. For me, it feels me with a sense of dread.

Last year in June I went on holiday to Turkey. It was my first beach holiday in 4 years and also my first holiday since becoming unwell and being diagnosed with POTS.

Turns out it was a bit of a nightmare. Heat and POTS do not go well together - and I really wasn't prepared for how I would feel, physically and mentally.

The temperature sat in the 40s (celsius) and was about 50 at it's highest. This was far too high for me. As a result I passed out several times but also was incredibly weak which worsened as the week went on.

Most people get a tan - I got paler and paler which really worried my parents. I was also irritable - as my parents asked if I was ok I was frustrated and snappy, which was a symptom in itself, I just didn't realise at the time.

I'm usually very chatty but that week I barely spoke. I was so fatigued it was as if the life but also personality had been drained out of me. It makes me really feel for the people with this condition who live in hot countries.

It was all so frustrating too - this discrepancy between the peace and enjoyment I should have been feeling on this lovely holiday, with the reality of feeling absolutely horrific.

This isn't meant to be a scaremongering story. It's not to say don't go on holiday if you have POTS, just that it needs a bit of forward thinking. So...

Things to do

Drink
Drink water/gatorade etc - lots and constantly. This is something you need to do anyway but even more important if you're going somewhere warm, and you're likely to be more dehydrated but also more active.

If you're worried about finding, or paying for, the drinks (ie Powerade/Gatorade etc) you usually have - take some hydration tablets, such as Nuun. This way you're already stocked up and just have to add water to make your hydration drink.

Check out whether to avoid tap water/ice cubes from where you're going - last thing you want is an upset stomach on top of usual symptoms.

Take equipment
Some people use a walking stick which also turns into a seat - it may be worth investing in one of these. Also shops like Boots and Superdrug stock cooling sprays when it gets close to summer, this really helped. A good fan is important too - and a big hat!

Get insurance
Register for a free EHIC card if you're from and going to Europe. This covers you for emergency healthcare. Even if you didn't have this condition this should be a must, but super important for us flimsy lot.

If you're going outside Europe make sure you have travel insurance that covers you. If you're incredibly symptomatic and have an injury on holiday that's awful but leaving with a massive bill will be even worse.

Ask for help
Inquire about assistance at the airport. You don't need to give evidence or a full story - they're usually more than happy to help, and can provide a wheelchair or take you on the motorised buggy.

This is especially important for coming home when you don't know how you'll be, and may not be up to waiting in line.

Plan ahead
Take a large empty water bottle to the airport. Yes, they make you chuck away liquids but if you take an empty bottle the flight staff will be happy to top you up. This also saves money from thinking you have to buy overpriced drinks onboard.

Stock up
Take medication onboard, and more than you would need. I say that because if you are delayed coming home - you'll really want to have more than enough medication to see you through.

Check with airlines as you may need a prescription or doctor's note to confirm your need for this. I've not had a problem with that before but worth checking.

Enjoy it
Ok so maybe your holiday won't be perfect. Maybe you'll be symptomatic and frustrated at that - but make sure you don't let that drag you down, and let yourself enjoy what you can.

The highlight of my Turkey holiday was the funny and charming waiters and the conversations we had with them. Oh and a lovely relaxing Turkish Bath - inside and away from the heat!

Things not to do

Go somewhere where it's ridiculously hot

So though I may be anxious about it - going somewhere at a time of year where it'd be 30 celsius maximum may be doable. I now know that temperatures as high as they were just don't make for an enjoyable trip, so won't be doing that again in a hurry.

Drink alcohol
While you may deal with this fine at home - if you're more likely to be dehydrated due to the heat, this may really wipe you out and cause you to be symptomatic.

Eat big meals
Sampling the local cuisine may be one of your favourite things about a holiday, but that's not to say you should completely disrupt your routine. Eating a large meal may bring on symptoms for you - and dealing with low blood pressure/tachycardia alongside the heat will be difficult.

Personally I often couldn't get through even half an evening meal in Turkey as I was so fatigued. I guess what I should have done was ask for smaller portion sizes so food wasn't going to waste.

Also whatever you do eat - pile the salt on!

Stay up too late

Ok I realise this may sound a bit of a boring list, but sometimes keeping a bit of discipline means you'll have a better time overall. ie If you go to bed at 3am because you don't want to miss out then suffer all the next day with symptoms - is it worth it?

Push yourself
Similarly, just because you're on holiday, doesn't mean you have to try super hard to "make the most of it" as everyone else does and can. Know your limits to help you have the best time possible.

Feel guilty
Linked to the above - yes you, or someone else, may have paid a fair bit of money for you to be on this holiday. Just because you're needing to nap in the hotel during the day, doesn't mean it's a waste or you should feel bad. It's not your fault - so just enjoy what you can and go at your own pace and by your own rules.



So these are just my tips from one eventful summer holiday. Any other ideas for how to cope with/enjoy a summer holiday with POTS?

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