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They shall grow not old, as we that are left grow old;
Age shall not weary them, nor the years condemn.
At the going down of the sun and in the morning
We will remember them.
Other stuff
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.
Pain: a very curious companion
Chronic Pain is something of a curious companion. A very constant, curious companion.
When waking in the morning it’s already there. Bright-eyed, bushy-tailed and smirking in delight. Always perched at the end of your bed, double espresso in hand and impatiently tapping a foot. Just waiting to crack on and eager to ruin your day.
From eyes open to eyes shut, Pain makes everything you do a mission and the simplest of things a chore. Stairs turn into mountains and every walk feels like a trek. It’s there when you shower, cook, eat, drive, shop and rest. It pesters you when you’re working and turns your brain to fog. It mocks all attempts at exercise. It punishes you for weeks.
Like a lazy toddler who refuses to be put down, Pain hangs off necks causing knots to form and tendons to shriek. It clings to backs until muscles pull and ache. It grips hands in a vice, crushing fingers until colour drains and cramp sets in. It bounces off hips and sits astride shoulders, gripping temples and reigning blows down upon throbbing heads. It’s positively relentless. And an utter pain in the arse.
At the end of the day when you eventually collapse into bed, Pain is still there. Snuggled in like an unwanted spoon, weighing you down and wrapping around every painful limb. And then for its grand finale – the biggest insult of all.
By the time your eyelids are hanging down past your cheeks, blissful sleep doesn’t even come to save you. No sirree. Pain snores like a freight train, kicks the small of your back and hogs the entire duvet. So now, you’re utterly exhausted and completely wide awake, all at the same time. Painsomnia they call it. Possibly the worst hours of the entire 24-hour day. And that really is saying something.
Week after week, year after year Pain hangs around like a bad smell, just sat there waiting every morning. You can try drowning it in lavender scented bath water or drugging it with pills. You can count your breaths and be mindful or ‘downward dog’ it to death, but nothing really seems to work. No matter what you tell it or how loud you scream, rant and swear, it just smirks a little more and ramps it up another gear. To give Pain its dues, it certainly has commendable staying power and a very thick skin.
So yes, Chronic Pain is quite possibly the most curious, constant and loyal companion of them all. Just like cellulite or a very needy dog, come rain or shine, no matter what you do, it’s always there and it refuses to ever back off, take a break or budge.
Alive. Kicking. Almost.
Oh dear god, it’s been more than a year since the last post. There’s so much tumbleweed drifting around this barren landscape I call a blog that I can barely beat a pathway through to the ‘New Post’ button.
I do seem to be making a terrible habit of avoiding my screen and I’m not even sure why. Every day I wake up with the very best of intentions. Every night I promise that the next day I’ll definitely do better. Procrastination in its finest form, I’m sure you’ll agree. Sadly this terrible lack of motivation seems to have infiltrated almost every aspect of my day-to-day life.
Much like a petulant, sulking teenager, one day, Motivation simply gave me a withering look, rolled its eyes and then disappeared under a festering duvet. Accompanied by (oh so easily led) Mojo, they both holed up in the dark, barely visible amongst piles of cushions, hoodies and assorted technology beginning with ‘i’. They blocked out the world (except for the WiFi, obvs) and slept like the dead, surviving on nothing more than carbs, Spotify and Netflix. Sunlight was met with shrieks, hygiene was minimal and conversations consisted of no more than one syllable. Earphones kept all pleads, threats or bribes at bay.
It was neither a battle or a war I could win. I’m a mother of a teenager, I knew that.
To make matters worse, at the exact time Motivation descended into pubescent hell, my ‘Oomph’ simultaneously went into hibernation overdrive and Creativity went AWOL – last official sighting, 28th May 2017. I put that last deserter down to writer’s block on a gargantuan scale. The Trump wall of writer’s block, if you will.
Like I said, this last year really has been procrastination in its finest form. To highlight just how bad it became, both my 2017 and 2018 New Year’s resolutions were to try to write more on my blog. That panned out, clearly.
Come to think of it, my other three resolutions for 2017 and 2018 also proved something of a non-starter. They were: to start exercising more (and when I say more I mean to actually start); to make the time to meditate (instead of watching trashy but extremely enjoyable TV); to sell everything I don’t need on Ebay. Needless to say, my yoga mat was last seen loitering on top of the wardrobe, my Headspace membership expired with an embarrassing lack of use and my Ebay account has been as badly neglected as this blog. Fail, fail and epic fail.
There is, naturally, a valid reason for all the tumbleweed and radio silence. It’s called life, and it’s mainly been shit. I’d go so far as to say that life has completely drained the last jot of energy out of me. If the last year was put on a spectrum ranging from ‘Rainbows and Unicorns’ through to ‘Complete and Utter Misery’, I’ve probably been hovering right around the ‘Big Dark Hole’ mark. That’s somewhere between ‘Up A Creek’ and ‘Where Exactly Is The Light At The End Of The Tunnel?’ Nope, not a flicker of a rainbow or a bleeding bloody unicorn insight.
Daily existence has mainly centred around pain, with some exhaustion, frustration, upheaval and therapy thrown in for good measure. Then there’s been the depression, with a side helping of despondency, debt and despair. Oh yes, and a little bit of death, like a sprinkle on top.
A right barrel of laughs it’s been. A ‘fed up/screw everything/ I give up’ type of year in which I just haven’t felt engaged enough with my brain to type anything worth reading. Certainly, nothing that you, most lovely reader, would want to digest. That said, other people’s misery does have a wonderfully warped way of giving perspective and cheering the soul, so perhaps I’ve done you all a massive disservice.
Anyhow, I’ve decided that things need to improve, at least on the blog front. So I’ve dragged a stinking Motivation and Mojo out from under the duvet and slung them in the shower. Oomph has been given a triple espresso and Creativity has been frogmarched back from the wilderness and shackled to the keyboard. Now we’ll just have to see how that all goes.
So thank you – to everyone who hasn’t unfollowed me, to all those who’ve recently shown their support and for the truly lovely comments that have helped to remind me why I started the blog in the first place. It’s a mixture of all of the above and my therapist’s steel-capped boot up my backside that’s (hopefully) got me back on track.
It’s all a bit (fleecy lined) pants
January is one of those months when nothing really happens, it’s all just a bit blah. One minute you’re cramming a too big bird into a too small oven, the next, you’re realising that February is about to happen. Once again you ask yourself: What the hell happened there?
Was January shorter this year? Did I sleep through a week and not notice? Did we ever finish off all that turkey? Creme eggs already? Really?
For me, the weather plays a rather large part in this black hole of time. So cold has it been lately that I’ve only left the house when absolutely necessary. School runs and the occasional trip to support sporting offspring fall into this category. Clearly, I braved the post-Christmas sales as well, but that’s also a ‘necessary’.
Each day in 2017 I’ve sported exactly the same ‘dressed for warmth, not style’ combo: fleecy lined yoga pants (yoga mat not required), furry lined hoodie, furry lined slippers and thick fleecy socks. When needing to leave the house, so many additional layers of fabric are required that I struggle to bend over and pull my boots on. Aforementioned sporting trips involve jeans over yoga pants, multiple thermal vests under hoodies and two additional pairs of socks inside the fleecy ones.
Do I look like a blue whale packing some extra winter blubber? Most probably. Do I really care? Nope. Far too cold to give a shit. Have I showcased any of my ‘must make more of an effort to look stylish’ new sales purchases? Erm, no.
So about all this January blah-ness. I think it probably comes down to motivation; I know that I definitely lost mine. I suspect it might have been thrown out with the Christmas wrapping paper by mistake. It’s probably languishing at the bottom of a recycling skip right now, waiting to be pulped. Or worse still, buried in some godawful landfill with a pile of stinking nappies.
Sorry, I digress. Back to the blah.
For once, I can’t even blame it on the dodgy health. So far this year I’ve had great days, mediocre days and ‘don’t you dare even try and wake me up’ days. For the most part though (touch wood) the tablets are still doing their thing. Of course autoimmune is no friend of winter. My joints feel more inflamed in the cold. My mood dips when the sky is grey. My fatigue is ramped up by the central heating. My fingers often look like a rotting corpse.
It’s safe to say I probably won’t have much of a spring in my step until… well, until Spring. When the first daffodil is brave enough to claw it’s way out of the earth and face the world, I’ll consider doing the same.
‘Top 10’ things that chronic fatigue ISN’T
Following on from the last blog about unwanted opinions, here’s my ‘Top 10’ list of all the things that chronic fatigue isn’t.
Feel free to print it off and wave it around in the faces of all those doubting non-believers! Better still, why not download the PDF, print onto A3 paper and stick multiple copies around your home or place of work!
Oh, give me strength
Forgive me while I scream.
Back in August, I clocked in at the hospital for a check up with my Lupus nurse. It was one of those ‘we understand, we care’ sort of appointments. I told her how let down I felt by those overseeing my healthcare. I mentioned I was concerned about my periodic bouts of doom and gloom. I said I was worried the Azathioprine might not be doing its job.
Fear not, she reassured me, I’ll book you an appointment for 3 months time, that way I can double-check you’re ok and see if the meds are on track. Offer accepted and appreciated.
Then yesterday I received two letters in the mail. The first informed me that my appointment in November has now been cancelled; they hoped this wouldn’t cause me too much of an inconvenience. The second letter said my appointment had now been re-booked. For 8th August 2017.
2000 and bleeding 17. I admit I did a double-take on the year. Then I swore.
How reassuring that one minute they deem it necessary to check I’m not wallowing in depression or taking ineffective meds, then the next I’m put on hold for another 10 months.
I’d like to say I was shocked to the core, but I’m not.
Note to self:
You stupid girl. The next time you feel like this crap, please drag your head out from under the cushions and pay attention to the following symptoms:
When your lungs feel starved of o2 and every breath hurts – it should not be ignored. When it feels as if a boa constrictor is wrapped around your chest, crushing your ribs – it should not be ignored.
When you wheeze like a smoker for no good reason – it should not be ignored. When your body feels extra depleted, done in and defeated – it should not be ignored. When your skin turns an even sicklier shade of grey – it should not be ignored. When you’re hacking up mucus the colour and consistency of gloopy Ambrosia custard – it should not be ignored.
You silly, silly girl. All these symptoms are not ‘normal’, even in your messed up world. Quelle surprise, you have a lung infection. And that, my dear, will not quietly disappear without a helping hand, no matter how deep into denial you dive.
So now you can add another eight little steroid tablets to your breakfast menu and wait to see if they do the job. What’s that, you moan? 14 tablets with your granola is just too much to bear? Perhaps you’ll remember that next time…
Look on the bright side at least. Best case scenario: you’ll perk up and soon be back to your usual Lupusy self. Worst case scenario: come the weekend you’ll have bulging muscles and be ready join the ladies Russian shot put team.* A result either way, it has to be said.
* I jest, of course, these steroids don’t turn you into a super athlete overnight.
New Challenges & Painful Consequences
When visiting Thailand, there’s no time on the agenda to be aching, sore or ill, so during the last couple of weeks, I have thrown myself into life with great gusto. As those motivating, life-affirming signs always tell you to do, I lived every day to the full; as it were my last, in fact, and to hell with the consequences.
I took a longtail boat out in the pouring rain and explored the islands off the Krabi coastline. I discovered Phra Nang Cave – a shrine of wooden penises! I went snorkeling off of Chicken Island, though sadly there were more Chinese tourists flailing around in the water than pretty fishes in the sea.
I leapt from the top of a tree and into the unknown, soaring above the leafy canopy of a jungle, a stomach-churning 100 feet above the rainforest floor. I said a silent prayer and abseiled down the trunk of an incredibly tall tree.
I fed bucket loads of bananas and sugar cane to some rescued elephants. I stood waist-deep in murky water, washing and scrubbing their tough, bristly skin. I fed carrots to giraffes and stroked their noses; one sneezed on me. Very pleasant!
I experienced the lax and rather unofficial/unpredictable rules of the local road, clinging onto the back of a speeding moped. I visited bustling night markets and had the dead skin on my feet nibbled off by 100’s of fish. I had my knotted muscles and painful joints pummelled to within an inch of my life, and my skin scrubbed down, oiled up and kneaded to that point where pleasure starts to merge into a rather necessary pain. I ate a lot of Thai Green Curry.
And then for the pièce de résistance in this bucket list of physical challenges: I scaled a waterfall. Yes, that’s right, me, a person who often has difficulty making it up a flight of carpeted stairs. I clambered up and down some very steep rocks into oncoming cascading water; barefoot and by hand, no less.
Sadly this impressive feat has 
nothing to do with a miraculous cure or some newly acquired superpowers. Rather it was down to the limestone mineral deposit on the rocks at Sticky Waterfalls (officially known as Buatong or Bua Thong waterfalls) that turns even the most uncoordinated person with zero balance and climbing skills (that would be me) into a sure-footed, Spiderman-like superhero.
I’m now half way through the trip and it’s time to take regroup and recover; time to deal with those consequences I mentioned at the start. I’m used to the drill and it’s nothing I haven’t experienced 100 times before. But oh boy, why do those consequences have to be such a brutal wake-up call.
I’m into the fifth day of ‘post overdoing it’ agony: bone-jarring, head to toe pain, hypersensitive skin, inflammation in single every nook and cranny and the life-sapping lethargy that makes every set of stairs seem like a mission too far.
Remind me again how the hell I managed to scale a waterfall?!
Of course, I know my body will settle back down in time and forgive me for taking the proverbial. It always does, eventually. I suspect, however, it might take a little longer than normal to bounce back this time. In hindsight, perhaps the Spiderman antics might have been taking things a step too far.
Getting away from the world
24 hours, three flights, two sick bags and one emergency oxygen canister later, and we have finally arrived in a little corner of paradise called Krabi. Time for some much needed rest and recuperation.
Set beneath towering cliffs in the middle of a tropical jungle, our resort is possibly the most idyllic setting in which to escape from the real world. So far, so perfect.
Being one who struggles to stay awake and overly active at the best of times, the multiple flights, change in time zones and a big old helping of jet lag isn’t much helping the cause.
Day one: crawl out from under the mosquito net for breakfast; scuttle back to bed for a quick nap; wake up at 6pm; swim, eat dinner and then go back to bed. All-in-all a thoroughly exhausting and non-productive day.
Plan of attack going forward: stay awake long enough to actually leave the bungalow and experience Thailand.
Day two: wake up from a deep, coma-like sleep; leave Arctic temperature of an air conditioned room and get hit in the face with a wall of 96-degree heat; stagger to the restaurant for breakfast and eat my own body weight in eggs and papaya. I figure one will counteract the other…
Next for the tricky bit: protecting my sun-sensitive, lupusy skin in an environment that’s not dissimilar to a tandoori oven. First up, a very liberal helping of Factor 50 P20, followed by Factor 50 on the face and a bit more Factor 50 for good measure. Plus, of course, the obligatory hat and big glasses.
So here I now lay, oiled up like a seagull in a shipping disaster, sweating like a beast and hiding under the shade of umbrella by the pool.
So far, so sun safe.
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