I live with MS and heatwaves are cruel and isolating. Here's how I stay connected

It's getting hotter in our cities. In climate talk, scientists call it tipping point and others say boiling point. But for me this is Howling Point.

I'm still feeling the impacts of heatwaves in Perth from December 2021.

The maximum temperatures persisted over 40°C and overnight temperatures remained high. Several coastal locations had their highest December temperature and warmest December night on record.

There was no relief and nowhere to hide.

Every time it's hot, my world goes blurry

We were in it together that month, but unlike most people, I still feel the blows. They hit harder every time another heatwave comes in.

I live with multiple sclerosis (MS) so my nerves, my wires, don't have the same insulation as most people. In medical terms it's called Uhthoff. I call it Short Circuit because I overheat.

Sporadic hot days are easier to manage, but heatwaves are different. They are cruel. Every time it's hot, the world goes blurrier.

My hands twitch. I drop things. I can't write with pens — this is particularly brutal because I love writing and I love pens.

These are things I experience daily as my brain changes, and I adapt to MS. Heatwaves just make all that so much worse.

The moments heat has snatched from me

You know those beautiful summer evenings when we sunbathe in smiles at a local park or backyard? Well, those are the moments that heatwaves have snatched out of my treasure box.

When it's hot, I can't focus on conversation. I usually smile but can't follow the laughter and joy around the table. Human connections matter to me a lot and I don't want to be rude, but chances are if we're talking and it's hot, I can't really focus on what you're saying, unless we find shelter under a tree or go somewhere cooler.

Sometimes I just stay inside. I can hear music on the street, happy people in happy backyards. What can I do to bring the joy inside? I go into my office, look out the window and begin to write.

Then there are the migraines. Migraines and heatwaves, two bullies that follow each other around and force me to seek cool refuge.

That's enough to keep anyone away from a Christmas lunch, right? What about Boxing Day? Yes, the whole thing reminds me of boxing. Except in boxing, each champion goes into a match willingly. Not me. I don't have a choice.

I'm far from alone in this experience

Extreme heat disproportionately impacts people with disabilities. Managing extreme heat can be isolating and lonely.

We must help each other and plan to stay connected, because the best way to tackle heatwaves and social isolation is together. We'll make sure this year Boxing Day is different because you won't be alone. Here are my tips:

1. 1.Never go into Howling Point alone. Please reach out, there's always help. You can reach Lifeline on 13 11 14 and Beyond Blue webchat.
2. 2.Connect with your local community, where so many people are waiting to meet you and learn from your talents and experiences. If you're in WA, Volunteering WA can help you find an opportunity you'll love. Organisations like the Hillview Intercultural Community Centre and the Community Arts Network are great places to connect with others in your area.
3. 3.Plant more trees together during the cooler months. Trees keep our communities cool. They are our natural air conditioners. Check your local council website for community planting events. While every day can be Tree Day, the 2024 winter community tree planting dates are Schools Tree Day on Friday, July 26 and National Tree Day on Sunday, July 28.

Next time heatwaves come around, they won't find us alone, they'll find unity.

Wildaliz De Jesús is a Boricua writer living with multiple sclerosis. She is currently based on Whadjuk Noongar Land/Perth.

The ABC is partnering with International Day of People with Disability to recognise the contributions and achievements of the 4.4 million Australians with disability.