The Heat and How I Tackle It — Living with MS in Summer

Living with chronic illness in summer is a whole different experience. Here's my honest account of how heat affects my Multiple Sclerosis and the real life hacks that actually help.

Don't get me wrong — I am a summer person. I love the sun, I love getting outside, I love a warm day in Sunny Seahouses with the sea breeze and a coffee in hand. Summer is genuinely one of my favourite times of year.

But there's a difference between loving summer and loving getting too hot. And when you live with Multiple Sclerosis, getting too hot isn't just uncomfortable — it's a whole thing.

What actually happens to me when it gets warm

The moment the temperature creeps up, my body starts doing its own thing. My right hand loses feeling almost immediately — not gradually, not a little bit, just gone. My eyes start seeing bumpy lines that are in reality straight imagine seeing the lines in the middle of the road waving at you, and the fatigue? Oh, the fatigue. Not tired-after-a-long-day fatigue. The kind of fatigue that makes you feel like your bones are too heavy and doing anything small like getting up to pee is a marathon. I suffer with lhermitte's sign which is like an electric current running down my legs to my feet when I bend my neck forward.

It's called Uhthoff's phenomenon if you want the science bit — basically MS symptoms temporarily worsen when your body temperature rises. Your nervous system is already working overtime just to do the basics, and heat makes everything harder.

So yes. Summer is a vibe. Just not always a good one.

How I actually cope — real talk

I'm not going to give you a listicle of tips you've already read a hundred times. This is what actually works for me:

Wear the right things. Loose, baggy t-shirts and shorts are non-negotiable. Anything that traps heat against my skin is immediately a no so nothing tight! Lightweight organic cotton is my best friend — it breathes, it doesn't stick, and it doesn't make me feel like I'm being slow cooked. (Funny enough, that's exactly why all our Something Profound t-shirts are made from Stanley/Stella organic cotton — I designed them for people like me.)

Ice in a sock. Yes, really. I fill freezer bags with ice, pop them into a sock and use them as cooling packs. Cheap, effective and endlessly reusable. I also use these when I get migraines!

The dog mat. This is my favourite one. I have a cooling mat in my bed — and before you ask, yes, it's a dog mat. Not a human one. Because the dog mat was cheaper and I am all about saving the pennies. It works exactly the same and costs about half the price. Consider this your budget chronic illness hack of the year.

Keep the blinds shut. My bedroom blinds stay closed on a hot day. It makes the room look a bit cave-like but it keeps the temperature down and honestly at that point I don't care what it looks like — I care that I can function.

Don't fight it. This one took me the longest to learn. On a really hot day, sometimes the most productive thing I can do is absolutely nothing. Lie on the cool mat, keep the fans going, drink cold water (or juice for me because water to me is yuk!) and wait for the temperature to drop. The guilt used to be immense. Now I just accept it. My body is doing its best in conditions it wasn't built for.

What I want you to know

If you're reading this and nodding along — whether you have MS, fibromyalgia, ME, lupus, POTS or any other condition that makes heat your nemesis — you're not being dramatic. The heat genuinely does make things harder for a lot of us and it's completely valid to find summer difficult when everyone else seems to be loving it.

Be kind to yourself. Wear the loose t-shirt. Buy the dog mat. Close the blinds.

And if you need something cool, comfortable, funny as fk and made for bodies like ours — you know where to find me. Our Live-in-Loungewear collection and organic cotton t-shirts were quite literally designed for days exactly like this.

Stay cool out there. Or at least, try to. We will survive this heatwave!

Sam x