How to Stay Cool When Your Nervous System Has Other Plans

There are people who flourish in hot weather.

You know the ones. The first hint of sunshine appears and they emerge from their homes in linen, carrying reusable water bottles and announcing that it is “such a gorgeous day.” They sit directly beneath the sun, apparently immune to sweat, dizziness and the sensation that their internal organs are being gently poached.

I am not one of those people.

I have multiple sclerosis, which means my immune system once looked at my central nervous system and decided it seemed suspicious. As a result, heat does not merely make me uncomfortable. It causes my existing symptoms to temporarily worsen, because damaged nerves become even less efficient when my body temperature rises.

This phenomenon has a proper medical name: Uhthoff’s phenomenon.

Giving it a name makes it sound almost elegant. Like a nineteenth-century German composer or a minor aristocrat who owns several vineyards.

“Oh, darling, have you met Baron Uhthoff?”

Unfortunately, Baron Uhthoff has not arrived with champagne. He has arrived to disconnect my legs.

The first day of the heatwave began with optimism. This was my first mistake.

I opened every window in the house, despite the fact that the air outside was hotter than the air inside. I believed this would create a refreshing cross-breeze.

It did not.

It created a through-draught from Hell.

The curtains moved slightly, but only in the sinister way curtains move in horror films immediately before something crawls across the ceiling. My cats positioned themselves in the tiny patch of shade beneath the dining table and stared at me as if I had personally arranged the weather.

I checked the forecast.

Twenty-eight degrees.

To people in genuinely hot countries, twenty-eight degrees is probably cardigan weather. In Britain, it is the temperature at which railway tracks begin to question their structural integrity and supermarkets sell out of disposable barbecues.

To my MS, it was a formal declaration of war.

My first symptom was fatigue. Not ordinary tiredness. MS fatigue is what would happen if someone replaced your blood with porridge and then asked you to carry on as normal. Every movement becomes an administrative process.

Stand up.

Submit request.

Allow five to seven working days.

I walked into the kitchen to get a drink and forgot why I was there. This happens even in cool weather, but the heat adds urgency. I stood in front of the fridge with the door open, enjoying the cold air while trying to remember my purpose.

The fridge began beeping.

I considered this deeply unreasonable. It was the only appliance in the house capable of helping me, and now it was criticising my methods.

“I’m thinking,” I told it.

Beep.

“I have a neurological condition.”

Beep.

“You’re being ableist.”

Beep.

Eventually, I remembered that I wanted water. I took out a bottle and closed the door, at which point I realised I had left my glass in the living room.

I decided to drink directly from the bottle. Adaptation is important when living with a disability. So is lowering your standards.

By lunchtime, my left foot had begun dragging. My brain was still sending messages to it, but the foot had apparently placed itself on annual leave.

Lift, I instructed.

No.

We are walking.

I don’t see how that concerns me.

My fiancé watched me cross the room with the cautious determination of a newborn giraffe navigating a moving walkway.

“Are you all right?”

“Yes,” I said, clipping my shoulder on the doorframe.

This is the standard disabled-person response. “Yes” can mean anything from “I am perfectly fine” to “my entire nervous system is being held together by positive thinking and the proximity of a chair.”

He suggested I sit down.

I informed him that I had things to do.

He asked what things.

I could not remember.

I sat down.

The internet recommends many ways to stay cool during a heatwave. Wear loose clothing. Close the curtains. Drink plenty of water. Place a damp flannel on the back of your neck.

All excellent advice, provided you have the energy and coordination required to locate a flannel, dampen it and transport it safely from one room to another.

I attempted this.

On the way back from the bathroom, my hand spasmed and I dropped the flannel onto the floor. I bent down to pick it up, became dizzy, and remained folded over for several seconds while reconsidering every decision that had brought me to this point.

The flannel lay beneath me, offering no apology.

Eventually, I retrieved it, placed it on the back of my neck and experienced approximately four seconds of relief before it became a warm, wet rag.

At this point, I began making questionable decisions.

I put my pyjamas in the freezer.

This is a genuine heatwave recommendation. What the recommendation does not explain is how to preserve your dignity when your fiancé opens the freezer and finds your nightdress nestled between a bag of peas and a frozen garlic baguette.

“It’s cooling,” I explained.

“The nightdress?”

“Me.”

“You’re not wearing it.”

“I’m preparing.”

He nodded in the careful manner of a person who has decided that asking further questions may only make the situation worse.

Next came the fans.

We own several fans because I have MS and because British houses are designed to preserve heat as though winter might return at any moment to inspect our work. I arranged the fans around my chair until I was sitting inside what can only be described as a low-budget wind tunnel.

One fan cooled my face.

One cooled my legs.

One rotated uselessly between the wall, a bookcase and occasionally me.

Every loose piece of paper in the room took flight. A receipt attached itself to my forehead. My hair entered my mouth. The television remote disappeared beneath the sofa.

But for one glorious moment, I was cool.

Then the electricity cut out.

Silence fell.

The fans slowed.

The air stopped moving.

I stared at them.

The cats stared at me.

Somewhere outside, a child laughed.

I do not know if the child was connected to the power cut, but in that moment I regarded them as a suspect.

My fiancé checked the fuse box. Nothing had tripped. The entire street had lost power.

Without the fans, the house immediately began warming like a conservatory full of baked potatoes. My body took this as permission to shut down additional services.

My vision blurred. My legs weakened. My brain fog thickened until every thought had to push its way through soup.

I tried to say, “Can you bring me one of the cooling towels?”

What came out was, “Can you bring me the cold… neck… thing from the thing?”

He found it.

This is love. Not flowers. Not poetry. Translating “the thing from the thing” before your partner dissolves into the furniture.

We activated the emergency cooling plan.

The curtains were closed. Ice packs appeared. A frozen bottle was wrapped in a tea towel and placed against my neck. I lay across the sofa wearing as little as decency permitted, looking like a Victorian heroine who had been overcome by the vapours but had also recently done a supermarket shop.

The cats, who had spent the morning avoiding all human contact, chose this moment to sit on me.

One settled across my legs.

The other climbed onto my chest.

Together, they added approximately ten kilograms of fur and body heat to a woman whose nervous system was already cooking.

“Please move,” I whispered.

They began purring.

I attempted to shift them, but my arms had developed the tensile strength of overcooked spaghetti.

My fiancé returned carrying another ice pack.

“Why don’t you move the cats?”

“I can’t.”

“Because of your arms?”

“Because they’re comfortable.”

Chronic illness may have taken many things from me, but it has not taken my ability to prioritise a cat’s convenience over my own survival.

By late afternoon, we had abandoned civilisation. There was no cooking. Turning on the oven would have been an act of domestic terrorism. Dinner consisted of crackers, cheese, grapes and an ice lolly. Nutritionally, it was somewhere between a picnic and a cry for help.

I ate the ice lolly too quickly and gave myself brain freeze. This seemed particularly unfair. My brain was already malfunctioning because I was too hot, and now it was objecting because I had tried to cool it down.

There is no pleasing the brain.

The power returned just as I was considering climbing into the bath with several bags of ice.

The fans sprang back to life.

One immediately blew a stack of unopened post across the room. Another sent a crisp packet skittering beneath the television cabinet. The rotating fan resumed cooling the wall.

I could have cried with relief.

Instead, I laughed.

Perhaps it was heat exhaustion. Perhaps it was the absurdity of lying beneath two cats with frozen peas tucked into my armpits while my underwear chilled beside the garlic bread.

Either way, once I started, I could not stop.

My fiancé began laughing too, although I suspect his laughter contained a small amount of fear.

“What?” he asked.

“I’m trying to stay cool.”

“You’re doing really well.”

“I’m wearing peas.”

“They suit you.”

By bedtime, the frozen pyjamas had absorbed the scent of the freezer. I put them on anyway and climbed into bed smelling faintly of garlic.

They remained cold for perhaps thirty seconds.

Then my fiancé stole half the duvet despite the temperature, one cat settled behind my knees, and the other lay directly in front of the fan, blocking the airflow with the precision of a trained saboteur.

I stared into the darkness and tried to practise gratitude.

I was grateful for the electricity.

I was grateful for the fans.

I was grateful for the ice packs, the cold drinks and the man who understood what I meant by “the neck thing from the thing.”

I was even grateful for the cats, although I would have preferred them from a distance of several feet.

Hot weather has a way of revealing exactly how thin the veneer of civilisation really is. Add MS to the equation and that veneer melts faster than an ice lolly held by someone with hand spasms.

You begin the day with hydration goals and sensible medical advice.

You end it half-naked, threatening the fridge, wearing frozen vegetables and accusing a neighbourhood child of interfering with the National Grid.

Still, I survived.

Not gracefully. Not elegantly. Certainly not while maintaining a stable internal temperature.

But I survived.

And when the forecast promised an even hotter day tomorrow, I did the only sensible thing left.

I moved the pyjamas out of the freezer.

Then I climbed in.