Lupus: surviving summer and box set surfing

This week I have been wiped out beyond all belief.  Flared up, energy-less and completely lacking the will to blink.

If I were a car, the fuel lights would’ve been violently flashing for at least the last hundred miles.  I’d be running on the remaining fumes of whatever it is that keeps me going.  At the present that would be copious amounts of anti-inflammatories, green tea, bananas and blueberries.

It’s all the weather’s fault.  This summer completely did me in, with its endless weeks of heat and sun – neither of which is my friend – followed by a burst of sub-Saharan temperatures that could have brought an African elephant to its knees.  OK, admittedly I’m talking English summer here, so perhaps with a little perspective I should scratch the elephant and replace it with a cow.  A very elderly cow.  A very elderly cow with arthritic knees, severe heat stroke and terrible dehydration.

It’s a well-known fact that a summer in the UK usually involves three things: high expectations, endless rain and crushing disappointment.  Anything over 15 degrees is met with shock and rapturous applause.  Climb into the 20s and the glamping brigade comes out in force.  Head towards the 30s and severe weather warnings begin.  Creep up any higher and the roads start to melt.  Literally, melt.  Nudge north of 35 degrees and the country battens down and prepares for Armageddon.

Shock.  Horror.  This August the mercury actually hit 36 degrees.  Across our green yellow and pleasant parched lands, the unmistakable raspy voice of Steven Tyler could be heard drifting through the still and stuffy air.  “I Don’t Want to Miss a Thing” he warbled, on constant repeat.  I humbly beg to differ, I could have happily missed the lot.

This sort of heat could cause even the spriteliest of people to wilt and fade –  and then there’s me.  I’m quite literally as far from spritely as it’s possible to be.  Back in June sometime, my body clocked one look at the ongoing weather reports and threw its hands up in a panicked surrender.  The next few months were brutal.

Roll forward to September and whilst the summer may have finished, the after-effects of that heat are like an unwelcome house guest.  Lingering and annoying.

Once upon a time, a younger, healthier version of me used to laugh in the face of the hottest of suns and crack open another bottle of tanning oil to celebrate summer.  (Clearly reckless and stupid by today’s standards, but normal back then.)  Today it’s a different story that I keep having to learn the hard way: even the mildest of months + lupus/sjögren’s/fibromyalgia do not mix.

And so, there’ve been endless weeks of dizziness and headaches, plenty of staggering around the house, closed curtains and a hell of a lot of horizontal living.  When your body renders you ‘not fit for purpose’ sometimes all you can do is sit, weep and wait the flare up out.  From my makeshift bed on the sofa one week, I worked my way through the latest series of Poldark, two series of The Crown and half a season of Greys Anatomy. Plus Love Island, obviously.  Even for a self-confessed TV addict such as myself, I have to admit this was pretty extreme viewing.

Sadly anyone with a chronic anything will tell you that watching TV as an invalid isn’t half as much fun as you’d think.  By the end of that week when the sofa and I had (temporarily) parted ways, I was miserable, bored, lonely, restless, festering and what felt like mere hours away from the start of a bed sore.

Not being able to partake in the world around you is beyond completely pants.  I hate it and resent it in equal measures.  So yes, for me, I’m relieved the summer is now behind us.  That being said, I have some sketchy recollections swimming around in my grey matter about how the winter is even worse.  Arghhh.

The thought of clambering in and out of all those tight thermal layers, boots and heavy coats is already making my little Raynaud fingers curl up in dread.

 

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2 thoughts on “Lupus: surviving summer and box set surfing

  1. Although we are worlds apart 🇦🇺! … I can totally relate. Our summer has just begun and my aircon is broken. I’ve been trying not to stress out about it …but it’s warming up fast !! Your post reminded me of when summer is in full force. 🤑. My priority list and shopping list has just changed so , thank you! ☮️ By the way, your outstanding writing and sense of humour has made my day ! I will be reading more of you !

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    1. Thanks, Allie, so glad you enjoyed it! I can actually fully empathise with your broken aircon. We moved back from a stint in Perth about 8 years ago, and the memory of that full-on summer heat still haunts me! x

      Like

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