Am I becoming a junkie?

October 31, 2018November 2, 2018 ~ Rachel ~ 2 Comments

In the beginning, when God created the earth, Eve nicked Adam’s apple and I got diagnosed with Lupus, I stubbornly resisted every drug I was offered. I was adamant that I’d manage without – save for a few ibuprofen when things got extra tough.

Six months later, when Lupus started to dig the claws in a little deeper, I was still in denial. I was reluctant to set off down a road with no end in sight. I was scared to start a medication I might never come off.

Roll forward a decade and oh, how things have changed. Sickandalwaystired.comMozi

As the years have ticked past and the conditions and symptoms have started piling up around me, not only have I stopped counting the pills I take, I’ve even started begging for more. Surely, this is not good?

I think I’m becoming a bit of a junkie.

The trouble with taking bucket loads of tablets every day is that after a while you start knocking them back like Smarties. You also start getting rather slapdash about the whole affair.

I’ve definitely become far too blasé for my own liking. I know this because the other day when I pulled out my medication suitcase for the weekly decant, I clearly didn’t have my mind on the job. After the 126 pills were all in their allocated compartments, I shook out the ones I was due to take with breakfast.

That’s odd, I thought. I don’t remember them being that shade of green.

So I looked a little closer.

And….holy shit.

SickandalwaystiredAzathioprine In place of the six white pills I take for vertigo every day, I’d somehow substituted them for six sleeping pills. Six sleeping pills that weren’t even the same size or colour – for that matter, they weren’t even in my current meds ‘line up’.

As cock-ups go that one could have been rather disastrous. I’m not entirely sure what that dosage of sleeping fairy dust would have done to me, but I’m pretty sure it wouldn’t have been good.

On the other end of the cock-up scale, I made a similar miscalculation that resulted in an entirely different outcome. The exact polar opposite of results, in fact.

A month or so ago, when trying to get an early nights sleep, my body was so wracked with pain that even the pressure of my bones resting on the memory foam mattress was making me feel nauseous. After unsuccessfully trying to levitate myself off the offending sheet, I reached into the bedside drawer with my one semi-functioning arm and fished out some extra painkillers.

Three long hours later and I was still laying there: eyes wide open in the dark and furiously trying to figure out what the hell was going on.

I tried hard to relax from my toes up to my temples – but was simply too annoyed at being awake. I tried counting leaping, sleep-inducing sheep – but was too irritated by their imagined bleating. I tried to think ‘mindfully’ – but was too wound up by my complete and utter lack of zen.

In the end, with a backward and ever so bitter glare at my sleeping, completely oblivious husband, I flounced off downstairs to the sofa with a pillow under my arm. There I lay, accompanied by the slightly perplexed dog and watching the mother of all tripe and trashy TV until well past 5.30am. I think at that point I passed out rather than fell asleep.

Later that day I discovered what went so very wrong. When scrabbling for pain relief in the dim glow of my phone screen, I had mistakenly grabbed at tablets containing caffeine. No big deal you’d think, but caffeine is a stimulant my body hasn’t consumed or experienced in over 15 bloody years. No wonder I’d felt wired.

Needless to say, I’ve now started to harness all of my powers of concentration when sorting my meds. I’m also pondering just how much I knock back.

I’d love to be able to wean myself off all of this toxic crap, but I don’t see how it would ever be possible, or if I’m brave enough to see how my body would even react.

Pain: a very curious companion

July 5, 2018 ~ Rachel ~ Leave a comment

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.

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Alive. Kicking. Almost.

June 5, 2018October 6, 2018 ~ Rachel ~ Leave a comment

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.

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‘Top 10’ things that chronic fatigue ISN’T

December 14, 2016 ~ Rachel ~ Leave a comment

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!

Current status (say no more)

June 13, 2016June 13, 2016 ~ Rachel ~ Leave a comment

The two faces of Lupus

June 1, 2016September 29, 2016 ~ Rachel ~ 6 Comments

These days there are definitely two versions of me: the ‘inside the front door’ me and the ‘facing the world’ me. Same species, same person, same DNA, but oh my, you wouldn’t believe how different I can look.

My ‘inside look’ is quite a sight to behold: yellow/grey/green tinged skin; hooded, burning panda eyes; well past needing a wash hair, dragged up into a top-knot; a chicken legged hobble when I walk. And then there’s the uniform of the chronically ill: the baggy t-shirt, hoodie, all-day pajamas, tracksuit bottoms, leggings combo. Plus fluffy socks and slippers, obviously. Wearing a bra very much comes down to the mood on the day and how much extra effort will be required.

Very few people are unlucky enough to be subjected to this terrifying, unfiltered version of me. My husband and kids take the brunt of it, and they’re so used to it now that, god love ’em, they don’t even flinch. The postman is also subjected, but I do tend to hide behind the dog when opening the door.

On the odd occasion, this ‘inside look’ has actually made it past the end of the drive, but I do try to limit this to the ‘beyond too tired to give a shit’ days. Normally these outings involve the school run when I scuttle into the car wearing completely inappropriate night-time clothing and large dark glasses. My poor daughter only has to spot me from across the car park, slinking down behind the wheel, to know what sort of day it’s been.

These momentary blips aside, when I head out with a chance of meeting people I will always make an effort to spruce up. If for no other reason than when you look like death, people have to pretend they haven’t noticed, and it all becomes a bit awkward.

My ‘outside the house’ look is a throwback to the pre-Lupus days. Preparation for this is like an episode of DIY SOS, sponsored by Batiste dry shampoo and the entire Bare Minerals range. First up is the need to change into items of clothing that aren’t shaped like a bin bag and made entirely out of misshapen cotton, lycra or fleece.

Then there’s the makeup. Thank god for the makeup. It can take a skin tone from exhausted, jaundice chic to healthy, sun-kissed glow in a matter of minutes. The trick, I have learnt, is not taking the transformation too far. Like I did a month or so ago when my husband felt the need to point out I was looking a little too ‘just back from a holiday’ for the middle of an English winter. Hair straighteners are a must, obviously. Finally, remove slippers, add shoes and ‘ta daaaaaa’. From half dead to healthy looking in a jiffy.

But here’s the bugger. The moment you make an effort to look like a healthier version of yourself, people think you’re cured. Or worse still, they think you were never really that sick in the first place.

“You’re looking great, are you feeling better then?” they ask. Now there’s a tricky one to answer. Your illness is not their problem and of course they mean well, but…

“No, definitely still sick, just caked in makeup, rattling with pills and forcing a smile,” would be the honest reply. But who wants to hear that, it’s a guaranteed conservation killer.

I’ve found it’s best to just keep it simple and lie. “I’m fine.” usually does the trick.

A dog walk too far

May 6, 2016September 29, 2016 ~ Rachel ~ 2 Comments

At the start of the week, I looked in the mirror and realised my total lack of exercise is starting to play havoc with my waistline. Too many comfort calories and that muffin top is threatening to develop into a brioche. And that, if left unchecked, could very well morph into a farmer’s loaf.

Time to get up and moving, I told myself. On Monday I wheeled out my bike, brushed off the cobwebs and went out for a very gentle cycle. All good so far; I was still standing, all limbs working and one whole biscuit’s worth of calories burned off.

So the next day I woke up brimming with good intentions. And then made the fatal mistake of thinking I could do more than I can. Silly me, why do I keep letting my wishful thinking hijack my common sense.

I did the school run by foot and decided to live dangerously: I took the long way home. I’m only talking about a few extra roads and a quick detour via the park, but oh boy, what a difference an extra half an hour can make.

By the time I’d carried a happy, wet pooch through the house, I was fit for absolutely nothing. Yawning, exhausted and zonked out on the sofa. I never learn, as my husband was quick to remind me. ‘I only suggested you walk to school and then come straight home’, he pointed out, ‘not traipse around the entire village’.

Clearly, it was a moment of pure madness and one I’ve paid the price for all week. Argh. It makes me want to jump up and down and scream that I can’t do something as basic as walk the dog without knocking my body out. All that effort to work off one sodding biscuit on Monday and I’ve probably eaten an entire packet since.

When diagnoses are a bit like buses

April 22, 2016September 29, 2016 ~ Rachel ~ Leave a comment

My journey to diagnosis was a long and frustrating slog, to say the least. Partly because it’s a very difficult thing to diagnose and partly because no one would bloody listen. I often felt tempted to just give up trying to find out what was wrong. On a regular basis, I lost all faith in the medical profession.

Looking back I now know that my Lupus kicked in years ago. The first sign was the terrible pains in my legs and hips; some days they got so bad I could hardly stand up. I went to our local doctor in Australia (where we were living at the time) but he didn’t have a clue. He sent me off for x-rays but nothing showed up. He didn’t really bother to investigate beyond that, even though the pain continued.

Eventually, I found myself a chiropractor, who told me I had one leg shorter than the other. Diagnosis completed, as far as she was concerned. I was then sent to a podiatrist who made me a heel lift to wear in all my shoes.

What a proud Forest Gump moment that turned out to be.

Of course, no one wears shoes in Australia, they wear thongs (that’s flip-flops to you and me), so it doesn’t take a genius to work out you can’t wear a heel lift on a Croc. So painful hips, one leg longer than the other and then limited to trainers in the 40-degree heat. Oh, how I laughed.

Of course, the heel lift did nothing to help the underlying issue that was Lupus. Funny that seeing as being a bit stumpy in the limb department has absolutely no bearing on one’s immune system.

Adding to the drama further I then suffered a very miserable 3-month bout of vertigo. The full on type where the world spins around you, not the fear heights. Heel lifts no longer become such a concern as I could barely stand up without falling down.

This was later followed by a night where breathing became tricky and I lost feeling in both my legs. An ambulance was called and I was whisked off to the local A&E. The doctors were once again clueless. They tried to put it down to me overexerting myself at the time. The fact that at the time it happened I was calming sitting down, eating a yogurt and watching Greys Anatomy. So nothing ever came of that episode either, except of course an $800 bill in the post for the pleasure of my ambulance ride. Australia sure isn’t the cheapest place in the world to be sick.

Fast forward a year and I’m back in the UK. Out of nowhere my fingers suddenly started to go numb at the drop of a hat. One minute totally normally, the next I’d have a full set of bloodless digits; they looked like the hands of a corpse that’s been washed up after several weeks at sea. Not pleasant at all, but BINGO, suddenly I had my first diagnosis: Raynaud’s phenomenon.

Dodgy hips, random pains and unexplained bouts of tiredness continued, and then fast forward another year and my eyes were now dry and burning and my mouth felt like a forgotten flip-flop in the Sahara Desert. BINGO again. It’s Diagnosis Number 2: Sjögren’s Syndrome. Bit like buses these damn diagnoses.

I honestly can’t even remember how, why or when they reached my final diagnosis of SLE. For some reason, my GP failed to tell me she was even testing my blood for other things. So I suppose it stands to reason that she would also forget to tell me what they had found out.

The first I knew of it was during a nurses appointment at the hospital. Just a simple check up I thought, after having my numb, wrinkled fingers x-rayed and my dry, itchy eyes scanned.

So why am I seeing you today? I enquired of the lovely lady in blue.
I’m your Lupus care nurse, she said.
Why do I need one of those? (sometimes it takes a while for the penny to drop)
Because you were diagnosed with Lupus a month ago, she said.
Oh. Right. Good to know.

Queue much crying by the time I’d reached the car.

Vampire nurses and stubborn veins

September 30, 2015September 29, 2016 ~ Rachel ~ Leave a comment

Really exciting day lined up: I’m getting my bloods done.

With no appointment booked it was a case of turning up and queuing up. The waiting room, as ever, stank of old people, wee, and misery. Just as well there were no free chairs; there’s only so long you can wrinkle your nose and hold your breath. Far better to sit out in the corridor, watching the world and their sickly mother shuffle past as you repeatedly check a ticket counter that refuses to budge.

After all these years of being stabbed, drained and tested, bloods don’t usually bother me. Following my recent stay in hospital, however, when three separate doctors left my arms black and blue for weeks, it appears my body is now somewhat reluctant to play ball when offering up vital fluids.

“My, my, haven’t we got small veins,” said the nurse brusquely, as she pinched, prodded and slapped my arms a little too enthusiastically for my liking. She was obviously expecting said veins to leap to the surface and present themselves, like lambs to the slaughter. They refused to come out of hiding. She wasn’t impressed.

“Perhaps my veins don’t like you.” Is what I’d like to have said, if I wasn’t restricted by good manners and the knowledge that the vampire nurse was brandishing a bloody great needle with my name on.

With the customary “just a small scratch”, she punctured my skin with all the grace and care of a stampeding bull. I swear my backside cleared the seat by a good couple of inches, causing the now embedded needle to jump around in my flesh. I yelped (in my head; stiff upper lip and all) and glared at the top of her head. Wretched woman. Had she used a Dyson DC39 to suck the blood out of me I don’t reckon it would have hurt much more.

“That was really painful,” I wailed when the damage was done. I waited for the reprimand but instead her face fell and she looked genuinely gutted. “I’m so sorry, I don’t know what I did differently.” She looked flustered.

Well, didn’t that make me feel guilty as hell. I ended up apologising to her for my discomfort: for my tiny, uncooperative veins; for leaping from the seat; for causing the needle to move; for my pre-existing pain having made it an altogether more unpleasant experience – for both of us.

By the time I slunk out of there I’m pretty sure I’d taken enough of the blame to restore her faith in her own needle skills. At least I hope I did, or God help Number 88 in the queue.