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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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.

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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.

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What is the point?

Sometimes it feels that people are constantly telling me how best to ‘beat’ this thing.  Doctors, nurses, specialists, family, friends – all telling me how to get the illness in check and under control.  All offering up an opinion.  All offering up advice.  All telling me what I should be doing.  All reprimanding me for not doing what they say.

But I try to do what I’m told, I really do.

I rest.  I sleep.  I take it easy.  I take a break.  I rest.  I do things in moderation.  I don’t push myself.  I rest some more.  I pace myself.  And then repeat.

That last one’s the worst.  Pace yourself they all say.  How is one meant to ‘pace’ oneself in a normal, everyday life?  What about the kids and family and home and work and pets and school runs and sports fixtures and all the other crap that comes in between? How do you pace this little illness into that gigantic mix?  Please, someone, do tell.  What exactly is meant to give?

Even if I do make myself do all the above – the resting, the breaks, the endless sleep, it still gets me absolutely bloody nowhere.  All the pacing in the world and it achieves what?  A couple of ‘good’ days to get stuff done and then a week of feeling like absolute shit while my body struggles to get over the unexpected exertion.

Moderation.  There’s another word I hate.  I am sick to death of trying to live a life in moderation.  It’s like setting out to only ever achieve half of everything you want to do. For a task-loving, goal-oriented person like myself, this is the very definition of frustration.

Oh yes, while I’m at it, I’m also completely over being told I should of ‘learnt to know better by now’.  Two words to that one.  Bugger Off.

I did already learn long ago that this moderating, pacing and enforced rest doesn’t really work.  I get why those living in a logical think it would, but it really doesn’t.  I’ve learnt that truth the hard way – and on a regular basis, in fact.  Living like a sloth can usually buy a day or two, or a week tops, but that’s really about it.

But anyway, here’s the thing.  It’s not really the ‘learning’ to pace myself that I have an issue getting to grips with, it’s the acceptance that I have to do it at all.  The acceptance that there will always be limitations of one sort or another.  And with that comes the realisation: I’m never going to be able to climb a mountain, or walk for miles and miles along the beach, or hold down a full-time job, or even hit the town and dance till the sun comes up.  OK, granted, the mountain climbing was probably never going to happen, but it’d sure be nice to do all the rest.

What a dismissal, depressing and utterly uninspiring prospect this acceptance malarkey can seem.  Who in their right mind would ever want to do it?

So like I said before – seriously, what is the point?

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.

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‘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!

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When opinions come thick and fast

There are just so many helpful people out there in the world, all rushing to give their opinion on what chronic illnesses are or aren’t, and what they think will cure them. Opinions that are, more often than not, based on judgmental presumptions, half-baked facts and an irrelevant article they once read about an entirely unrelated medical condition.  A condition that was (according to Bella magazine) miraculously cured by dancing naked in the moonlight whilst chewing on the roots of a cactus plant.

Granted, sometimes these opinions do come from a place of caring and concern, but that doesn’t mean they sound any less patronising, insulting or annoying. Accusatory is how they often come across.  Like we’re somehow greatly exaggerating how we feel.  Or perhaps all these ailments are really just in our heads.  Or maybe there’s a glaringly obvious solution that we simply haven’t bothered to find out about for ourselves.

You haven’t got the first bloody clue.  Please remove your interfering beak from my business“.  Is what you want to yell.  But you don’t.

Who knows, perhaps it’s human nature that makes people always feel obliged to offer up an opinion or want to ‘fix’ things they don’t fully understand.  A bit like a man, I suppose, who when presented with a problem, will always try to solve it, instead of just dishing out the sympathy that’s required!

Having read countless posts on countless Facebook forums, it would appear that the majority of these uninvited and insensitive opinion givers are often those found closest to home: the spouses, parents, siblings and friends of the chronically ill. People, in other words, who you’d expect to be offering empathy, sympathy and a whole lot of understanding.

I think the trouble here lies with so many of these conditions (Lupus, Sjogren’s, fibromyalgia, CFS, chronic fatigue, chronic pain etc) being an invisible illness – and one that often involves two very different faces.  So unless the opinionated person in question has seen firsthand the fatigue or symptoms at their very worst, they can’t even begin to comprehend how life-changing and debilitating such a disease can be.

On the other hand, all these unsolicited opinions could just be down to that person being a thoughtless, self-involved, mentally draining, arrogant arsehole.  And if that’s the case, telling them to sod off out of your life is probably the simplest solution of all.

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Spinning right out of control

As weekends go, the last one wasn’t really the best.  Actually, it was probably one of the worst, in the grand scale of things.  Recent bugs, a helping of stress, cold weather and general exhaustion proved too much for my useless body, so it decided to teach me a lesson I wouldn’t forget in a hurry.

When emptying the (what felt like 100th) load of washing on Friday, the room suddenly tilted so violently, I nearly fell head first into the basket of wet towels. Strange, I thought, best I sit down for a bit.  By the time I made it to the sofa, everything was spinning around me at quite an alarming speed.  I could quite easily have been sick there and then, but knowing the cream chair covers would require immediate cleaning proved enough of a motivation to kept my partially digested lunch where it belonged.

Feeling as if I was walking at a right angle, I slithered up the stairs (past a rather alarmed looking son) and made it to the safety of the bed.  Lying down didn’t help much, in fact, it made things worse.  The insides of my head were now spinning too, and in the opposite direction to my body.  I felt dizzy-sick-and-always-tiredlike I was trapped on one of those horrible tea-cup waltzers.

When I woke up an hour later, it was dark, I was sweating like a beast and I needed the loo.  The trouble was, however, as hard as I tried, I couldn’t seem to get up.  All I could manage was to shuffle a bit and that just made the world tip.  Panic set in – big time.  I came to the conclusion (as you do) that I might have had a stroke.  Either that or the vertigo was back with a vengeance.

For those who think vertigo is merely a fear of heights, it is not.  Vertigo is a horrible, nightmarish infliction that can disrupt and ruin your life for months on end.  The thought of it returning fills me with a constant dread.

Trapped under the duvet, my only option was to ring downstairs for help. Thank god for the ever-present mobile that was finger distance away.  It took four unanswered calls and a feeble “help me”  before the cavalry came charging up the stairs.  By this stage, I was beside myself.  I couldn’t sit up, stand up or walk;  my body simply refused to comply.  Then the weeping and wailing kicked in, and, as we all know, once you go down that road it’s impossible to stop until you run out of clear airwaves to breath through.

It’s hard to explain the range of emotions when pain, panic, wretchedness and fear collide.  Feeling so utterly helpless is a scary, scary thing.  Not understanding what the hell was happening, or why it had come on so fast, made it scarier still.  At that point in time, I was utterly convinced it was never going to stop, or, worse still, if I went to sleep again I might never wake up.

It took a day in bed before the room eventually stopped spinning.  It took another 48 hours before my body was functioning at a relatively ‘normal’ level again.  Ridiculous as it may sound to some (though I know many others will certainly relate) for days afterwards I felt as if I’d undergone a major trauma.  If I’m honest, I’m still slightly shell-shocked by the whole thing now, and more than a little unnerved.

I have to say, it’s at times like this that I really hate how life can be.  And I worry about what exactly the future might bring.

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Want to know how ‘Chronic Fatigue’ feels?

How best to describe what chronic fatigue feels like?  Perhaps the most effective way would be to compare it to some more relatable ‘everyday’ scenarios.

So here goes:

Imagine you’re midway through an atrocious bout of flu.  No, not the sneeze and sniffle sort that men call flu, I’m talking the full works: body aches, pounding head, cold sweats, chills, and the raging fever sort.

Now, with your energy levels already running on 50%, you head to the airport and embark upon an epic 24-hour flight.  The seat isn’t big enough to swing a hamster in and the food is inedible at best.  An irritating child kicks you in the small of your back for hours on end; your body now feels even more bruised, battered and achy than before.

Sitting in the dark and surrounded by 100’s of snoring strangers, you feel isolated and totally alone.  You give up trying to sleep and watch film after film to pass the time, but this makes your eyeballs sore and sandpaper dry.  You’re desperately thirsty, but as you’re pinned in by the window you can’t risk a full bladder.  Five films and two rock-hard bread rolls in, you realise just how far you still have to travel and you begin to feel a bit beside yourself.

By the time you arrive at your destination you look, feel and smell like death.  As you exit the plane, you’re hit in the face by a 50-degree heat and a 90-degree humidity.  You’re feeling weak, disoriented and so dizzy from exhaustion you can hardly stand.  Your brain is completed shrouded in fog and you can barely remember your own name.

By now you’re running on 30%, tops.

Fast forward to that night and your body is moving in slow motion. Your use of speech is limited to grunts and your concentration levels  are shot to shit.  You’re convinced you’re battling the worst diagnosed case of jet lag ever.  But still, it’s holiday time, so you decide to hit the town.  Copious amounts of alcohol and some rather suspect street food later, you collapse into bed.

The next morning, before you even struggle to prise open your eyelids, you realise something has gone terribly wrong with your body.  Panic starts to set in and you feel scared and vulnerable.

Your battered limbs feel as if they’ve been encased in cement and bolted to the bed.  Raising your head from the pillow is a step too far.  It’s as much as you can do to twitch one finger.  You soon come to the conclusion you’re suffering from the worst diagnosed hangover ever.

Despite having slept all night, you’re now running on 20%.

Eventually, your body starts responding to basic requests and you heave yourself into a sitting position; it takes another good few minutes of concentration before you can stand.  You decide it’s probably safer to sit down on the floor while taking a shower.  Hot water helps with the aching bones, but washing your hair is out of the question, as your arms aren’t strong enough to lift above waist height.  Ditto for teeth, so you resort to resting your elbows on the sink while you brush.

By the time you’re clean, you’re running on 10%, max.

Heading out for a day of sightseeing, you attempt to climb (what appears to be) the steepest hill you’ve ever seen.  Everyone else seems to be overtaking you at speed, but putting one foot in front of the other is proving something of a challenge.  It feels as if you’re wading through treacle; every step takes concentration and requires way more energy than you have.  You hit the wall.chronic-fatigue-sick-and-always-tired

 

 

 

 

 

By the time you go to bed that night, every limb is on fire and you’re so knackered you can neither think nor speak.  Another shower is certainly out of the question.  Nausea is coming in waves and you think you might be sick.  You pray it’s not that dodgy street food from the night before.

Climbing into bed you expect to fall into a deep and wonderful sleep – but you don’t.  Despite being delirious with exhaustion you lay awake for hours on end.  You need the loo at least 6 times and each time it’s a mission to get out of bed.  It’s now something stupid o’clock in the morning and you’re wondering how it’s even possible to experience extreme fatigue and insomnia at exactly the same time.

energy-meter-sick-and-always-tiredAt most, you’re now scrapping the barrel on 5%.

The next morning you wake up, peel open your eyelids and realise you still feel exactly the same as you did the night before.  The thought of facing another day like yesterday is just too much.  You could cry.

A full night’s sleep and you’re only back up to a measly 10%.

That day, you lay on the bed and do absolutely nothing.  You can’t bring yourself to read, watch TV or even talk.  By night-time you’re back down to 5%. You don’t sleep well and the next day you wake up feeling exactly the same sodding way.  And so it goes on.

Occasionally, after prolonged periods of rest your body charges back up to 50% – you feel pretty bloody fantastic.  But then you go and ruin it all by trying to do too much.  A slap on the hand for being overly ambitious and back down to 5% you go.

Weeks pass.  Months pass.  Years pass.  You’re forced to accept that this is now the new ‘normal’.

You hate your illness. You hate your body.  You hate what you can no longer do. Your doctors tell you there is no cure for chronic fatigue, just ‘rest’.

You could cry.  You often do.

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P.S. The description above may sound highly unrealistic and incredibly melodramatic, but take away the unlikely chain of events, and the rest (in my experience) is the bloody depressing reality of living with chronic fatigue.

 

 

What is chronic pain?

I’ve already covered what chronic pain is, so now to talk about what chronic pain feels like.  Of course, everyone has very different pain issues to deal with, but chances are the overall experience is equally life-changing and depressingly miserable for all involved.

When it comes to that ‘Ouch to the Off The Chart’ pain spectrum I was talking about, for me, personally, it’s often at the upper end of the chart.

When I just had the Lupus to contend with the pain was easier to control, but now Fibromyalgia has joined the mix, my pain is now almost constantly ‘on the move’.  A bit like the London Underground, it runs up and down each of my limbs, careering from fingertips to toes and back again.  It rarely stays still for very long, just a brief pit stop in each area (giving it time to throb, burn, and ache) and then it’s changing direction and racing off to the next destination.  Migratory pain, the doctors call it; makes me think of a herd of wildebeest stampeding across the dusty African plains.

mallet-sick-and-always-tired-comAs well as being nippy on its feet, this pain of mine is also rather brutal.  It often feels as though someone has taken a mallet to me, and is smashing, shattering and crushing every bone along the way.

It’s not that dissimilar to when you whack your funny bone, and then have to stand completely still while the pain reverberates through your body.

As if feeling like a clubbed baby seal wasn’t stressful enough, there’s also a rather disturbing sensation of electricity and ice-cold water flowing through my veins.  Clearly, that’s slightly freaky and unnerving, to say the least.  We were all taught in science lessons that electricity and water really aren’t the best of friends.  I’m not 100% sure what causes this arctic electric shock of mine.  Something to do with the nerves, I think.

Some days the sheer intensity of all this combined pain is so severe it makes me feel nauseous.  Just like morning sickness, it comes in waves out of the blue and makes me gag.  The pain also makes me weep and wail.  I’ve sat in the shower and sobbed, laid in bed and howled, and screamed while driving my car.  Music was blaring and the windows were up at the time, so luckily no other road users were harmed or alarmed.

This chronic pain of mine has been going on for about eight years now – with the last six being the worst.  Initially, it resided in my hips and legs; my bones would burn and ache every single day.  Walking was difficult as my hips would seize up, even when shuffling along the road at snail’s pace.  A particular low point for me was being overtaken by an 80 something-year-old man, who was out taking a leisurely Sunday afternoon stroll.  With his cane.

There were days my joints hurt so much I couldn’t lift each leg to climb the stairs.  I would resort to crawling up, step by step on my hands and knees. Sleeping also proved tricky, as laying on either hip was proving agony.  I soon learnt to snooze on my back and keep a large stash of painkillers by the bed. Cortisone injections into each hip proved the only treatment that made a difference, but these were given out sparingly by the doctor and they only lasted 3 months tops.

Then a year or so ago I had a slight lull in the pain. Oh, the joys, what a difference that made – for about a week.  Then, fresh from its mini-break, the pain returned and spread to my arms and hands too.  Imagine my delight. Walking like an octogenarian is one thing, not being able to lift, pull or open a door is something entirely different.

It was at this stage, and after much moaning and groaning to my rheumatologist, that he agreed to try me on Aazathioprine.  After the first couple of weeks of pills, the joint pain almost vanished straight away.  Result! A few months when I was (wrongly) told to stop taking them, the pain came straight back.  And with a vengeance, I might add.  When I started back on Azathioprine for the second time it wasn’t quite so quick to take effect.  I panicked that it wasn’t going to work.  After a brief reminder of how good life without severe pain really was, I didn’t want to settle for anything less.

12 weeks on and, for the most part, the drugs seems to be doing their thing. As long as, that is, I don’t ‘overdo it’ or forget to get enough rest.

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