Disabled in the menopause…

icecream

Why a hot flush means more when you have MS:  😓

Menopause has always been one of those ‘women’s things’, certainly in British culture. A last taboo, something that is whispered about behind outstretched hands…’don’t mind her, she’s going through the ‘change’ ‘. What an archaic euphemism. All eloquently explored by the BBC’s Kirsty Wark recently, talking about her own experience.

But the symptoms of night sweats and hot flushes take on a whole new level of unpleasantness when – like me – you can’t control your body temperature.

I first became aware I’d lost the ability to sweat about 18 months ago when I almost passed out watching flamingos in Kenya.

Remember this shot?

OLYMPUS DIGITAL CAMERA

Lake Bogoria, Kenya

What you didn’t see was the litres of cold water being poured over my feet a few minutes after this shot was taken in a desperate attempt to stop me fainting, much to the horror of local villagers. What a waste of good drinking water.

I already knew that when core body temperatures rise in people with MS they can suffer a loss of strength, mobility and co-ordination.

But when the body has lost its primary ability to lose heat – sweat – what can MS-ers do?

Living in a tropical climate overheating is an on-going concern, but in Britain? (Mean annual temperature 11c, hottest monthly average 19c) Didn’t think I’d even have to worry about it.

But then came the menopause. Regular, unwanted, super-hot moments. Oh yeah. The curse of the hot flush. And I’m not talking about a pirate-themed movie starring Johnny Depp.

It’s the body’s way of saying as you can’t have kids anymore, I’ll just give you one long-lasting punch for maybe a year or so to remind you you no longer serve any evolutionary purpose. Bye-bye. Syonara. Get lost.

The menopause was first described by doctors back in the 1800s, although references to it go back as far as the ancient Greeks.

I used to look forward to arriving at this point in my life. No more PMS. No more bloating. No more feeling crap half the time. Oh no more.

Hours spent every night now with my scarlet-looking feet stuck out from the bed covers trying to shiver and hovering by the open fridge door waiting for the veins popping out the backs of my hands to shrink and flatten.

Back in Malaysia I could keep my cool with air-conditioning. But not so Britain with its hyper-insulated, over-heated homes.

What happened to the drafty Victorian terrace I used to live in?

Sitting in front of a window left ajar with a strong wind blowing doesn’t really help because while my extremities turn blue and feel at risk of frost nip, my core temperature still can’t cool down fast enough for me to be able to function normally.

It’s a problem I hope scientist Davide Filingeri at Loughborough University can help me find an answer too.

I met him online last week during MSAwarenessweek and he’s doing research into how and why people with MS suffer such loss of function when they get hot (even if the rise in temperature is less than thought to raise your core temperature).

His uncle and a family friend both have MS and suffer similar symptoms to me when regulating their body temperature.

The idea is to find better ways for MS-ers to cope with temperature extremes. Can’t come quick enough.

I’m going to offer myself as a lab rat to help his research.

Meanwhile, my latest purchase:

fan

A tower fan

😂