Hello and welcome to Believe in ME with Rhona Barton.
As you can hear, I have my voice back following my brush with Covid. I still feel a little rough around the edges so my apologies if my voice sounds a little odd throughout this episode. At least you know why!
I’m also back from our motorhome holiday in Switzerland and we had a fabulous time. It was very warm when we were away, and we came back to the UK just in time for the heat wave! And that’s what I’d like to chat about this week. How to keep your cool when everybody else isn’t! How do we cope with ME in the Summer.
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Let’s jump straight in.
I’m sure it hasn’t escaped your notice that the summer weather has decided to come out and play! Whilst this is usually welcomed by most, I’m not great with anything above about 19 degrees.
I know that everybody is feeling the heat but for people with ME, the additional heat can really make other symptoms worse. For me, it really would make me feel even more exhausted and I seemed to end up extra sensitive to other things, such as light and sound.
One of the things I remember most about my ME was the fact that my temperature control would be all over the place most days. In the middle of winter my family would be wrapped up in jumpers, hats and scarves and I would be in a t-shirt and shorts and looking for a window to open! The opposite would be true in the summer. What about you? Do you have issues with your temperature control?
Temperature control is a very common symptom in ME and normally includes sensitivity to hot and/or cold temperatures. Now, our temperature regulation is usually controlled by a small gland in our brains called the Hypothalamus. It’s thought that this sensitivity to changes in temperature may be related, in part, to a problem with this gland and the way our autonomic nervous system controls the size of blood vessels in response to changes in temperature. Consequently, people with ME need to take care when out in the hot weather and follow medical guidance if you get too hot.
It can be really tempting to try to head out and enjoy the nicer weather. You may be thinking you’d like a picnic in the park with friends or family, or that you’ve planning things out really well so that you can head to the beach for a spell. The thought of getting out of the house and doing something that everybody else is doing can be such a temptation.
The good news is, just like everybody else during the hotter weather, people with ME also have to plan on how we will keep our cool. The advantage we have over others, is that we’re used to planning and thinking ahead. We’re used to managing our energy levels and thinking through a number of scenarios rather than just jumping straight in. So, let’s use that to our advantage.
We spent most of our summer break with temperatures between 26 and 36 degrees. With the exception of 2 days of thunderstorms, the temperature didn’t let up. Thankfully, we were in the Swiss Alps and chose to head higher up the mountains most days. This meant it was a few degrees cooler. It also made our hikes, walks and cycles a little more pleasant than if we’d stayed lower in the valley all day. The warmer weather was a wonderful reason to hunt down an ice cream stop most days too! Ice cream gave some temporary relief but, in the evenings, and when we were driving, I really needed something more. We both did. I hate to tell you, the air conditioning in the motorhome wasn’t working so any cooling air we had hoped to get from it as we were driving around, was a distant memory.
So, what did we do to cool down and cope with the heat?
Well, a word of warning before you get too excited and carried away with all of my suggestions. The problem with trying to cool down is that sometimes we can do this too quickly. We don’t want to risk exposing ourselves to Heat stroke.
For me, it was really important to keep hydrated so we always had at least a litre of water for each of us when we were out and about, and we factored in pit stops for lunch or a snack stop when we could get supplies and some shade.
We walked and cycled past some lovely waterfalls and streams and I’m one for getting in there and enjoying a drink of fresh water. I also took the opportunity to wet a face cloth I’d packed in my bag and wear it loosely around my neck. It offered some additional sun protection and a chance to cool me down.
When we drove from campsite to campsite, I would freeze a bottle of water for each of us the night before and we could then lean against them during the drive, and they would cool down our backs.
So, what else would I recommend? What else have I used during my time with ME and in the years working in warmer climates since?
Well, here are some tips for dealing with hot weather – day and night:
1. Wear lightweight and loose-fitting cotton clothes – I have heard, but not yet tried myself, that Bamboo pyjamas can help to keep you cooler at night so that may be worth an online search.
2. If you are going outside, as well as the usual recommendations for sunscreen, I love a wide brimmed hat. I have Tilley hat that makes me feel a little like Indiana Jones when I wear it!
3. Avoid too many caffeine containing drinks, they tend to dehydrate you.
4. Eat small regular meals.
5. You may want to revisit your baseline activities during this time. The additional heat can exacerbate our exhaustion levels, so I’d recommend reducing activity unless you really need to go out.
6. If you are usually an out and about person, you may wish to consider moving your activities to earlier or later in the day and staying indoors during the peak heat.
7. Close the curtains and windows during the day in any room you want to stay cool, especially those that face the sun.
8. Although our air conditioning didn’t work in the motorhome, we managed to pick up a fan for use. It’s been great actually. It has a water reservoir on the side, and it draws that in to help pump out cooler air – like a mini air con unit. It was wonderful at night, and we could fill and keep the water reservoir in the fridge throughout the day.
9. Take a cold ‘hot water bottle’ to bed at night.
10. Have a bowl of cold water and a face cloth by the bedside at night to cool down with.
There’s quite a lot there to be considering and maybe you have some of your own hints and tips. I’d love to hear them so feel free to get in touch!
Just because I’ve shared this with you doesn’t mean I’m in any way an expert at dealing with the heat. I still mess up. It’s easy to forget your hat when you’re also wearing your cycling helmet and it’s easy to miss the back of your neck with sunscreen and only realise when you take your backpack off at the end of a cycle and see it’s pulled your t-shirt down further than you thought and your neck is now pink!
So, if things do go wrong, please be kind to yourself. Sunburn does heal (another tip, stick your after-sun lotion in the fridge for some double relief) and a random bush or tree can be a pleasant shady spot for your head when your cycle helmet comes off to eat.
That brings me to a few points from today that I’d like you to take away from this:
1. Go for some quick wins – a cold flannel, a frozen bottle of water, a damp sponge in a Ziplock back and in the freezer, open windows on the shady side of the house and reduce your day-to-day activities.
2. Remember that everyone else is feeling just as bad – even those without ME.
3. Although it’s nice to sit in the garden or the park or visit the beach, this will use up more energy so revisit your plans for the warmer weather.
4. Be kind to yourself if it all goes wrong!
So that’s it for today everybody. I’ve touched on my experiences of what I like to do to keep cool and what worked for us during our Swiss break. In doing so, I’ve chatted about some top tips that you may wish to try and given you a reminder that everybody else is also struggling to get to grips with the warmer weather that this summer has given us.
Thank you for listening. Please review, share and follow Believe in ME with Rhona Barton via Apple podcasts, Spotify or wherever you find your podcasts and remember that you can sign up to my mailing list by visiting my website at www.rhonabarton.co.uk
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