Grumbling Stomach v Patient Care

Last week I had my check-up with the rheumatologist – an annual highlight of my social calendar, alongside sorting the car’s MOT and having a smear.  As a rule, these appointments generally consist of 1 part disappointment: 1 part frustration: 2 parts total despondency.  They go something like this:

I arrive at the hospital with a well-prepared list of questions – I’m feeling positive, in control and determined to be heard.  I queue to get into the carpark, hand over a fresh pot of wee, get weighed and then wait.  And wait.  And wait.  I eventually get summoned.

I sit, he asks ‘So how do you feel?’ and I answer ‘Terrible‘ (that’s always a given).  He flicks his eyes across my notes and promptly declares that my bloods are looking good.  Less than two minutes after entering the room I am leaving it.  All my well-prepared questions are unasked and unanswered, my positivity is completely squashed and my ‘in control’ voice has been gagged and muted.  I scuttle off to the ticket machine, often in tears and always fuming – at him for making me feel so unimportant, at my body for being so useless and at myself for not having the balls to speak up more.

Why consultants (particularly male ones) seem to have the ability to render me a pathetic, jibbering wreck who actually feels guilty for taking up their time, is a complete mystery to me.  I think perhaps it’s the overpowering God complex they use to hypnotise patients with.

I wonder, do other people also feel ‘sshhhed’ into submission by all-knowing consultants, or is it just me?  And what about male patients?  Do they let themselves get steamrollered too?  Answers on a postcard – or in the comments below!

Anyway, where was I?  After a lengthy queue at the machine, I find out that once again I’m over the allocated ‘free’ parking time by 0.2 of a second, despite my appointment having only last two minutes.  I also realise I don’t have enough coins to pay.  So I leave the queue and join another, having to buy myself a muffin from the overpriced cafe just so I can get some change.

The muffin is invariably dry and totally inedible; it’s the final insult to an already depressing trip.  The muffin ends up in the carpark bin, I promptly scrape the hubcap against the pavement while trying to negotiate the hairpin bend of the exit and then, low and behold, I see that the ticketing barrier is permanently up.

Like seriously?  Is there anything more annoying than being made to pay for something that you don’t even have to?

On this last trip, for the first time, I decided to take my husband with me for back up.  I thought perhaps this might counteract all that testosterone swirling around the room.  I also wanted him to experience Dr Complete Lack of Bedside Manner for himself.

Sadly, on this appointment, it was not to be.

Being the last patient of the morning shift, Dr CLOBM (as I shall now refer to him) had decided to skip his customary two minutes with me and head off early.  The first I was aware of this was when a registrar called me in and said he’d be filling in for Dr CLOBM as he’d been called away for a ‘meeting’.  Had he heck, a meeting with his stomach perhaps.  My husband had already clocked him in the corridor, heading for the exit and telling his medical student to go on and get them a table for lunch.

I know!  What a bloody liberty!  The man only has to see me once a year, couldn’t he have overcome his hunger pangs for the couple of minutes that he normally allows me?  After all, there’s plenty of other things I’d also like to be doing with my precious energy rather than queueing up, giving wee, getting weighed and waiting.

As it turned out, he and his grumbling stomach had done me an almighty favour.  As the fill-in registrar had not yet reached the lofty pay grade that causes ears to stop working, he actually took the time to listen to me and answer my questions.  Even more of a revelation: he asked about the pain I’m in and, for the very first time, properly acknowledged my fibromyalgia.  Halle-bloody-lujah.

He examined my hands (never happened before) and tested the fibromyalgia pressure points on my body (certainly never happened before; didn’t even know they were there). He also explained why my memory is currently shot to shit, and how and why my body wasn’t able to deal with the pain.  He then referred me to the pain clinic.

Thank god Dr CLOBM had considered himself and his plate of foie gras and chips more important than seeing me that day.  For the first time, I left the hospital feeling vaguely upbeat: not because I think I’m going to be ‘cured’ with revolutionary tips on pain management, but because I’d finally been allowed to have a voice.

When you live in a world ruled by chronic illness, where doctors control your drugs, your future and your fate, being ‘heard’ is a monumental achievement – as much as an achievement as when Armstrong went for a stroll on the moon.

So that’s one small step for (chronically ill) me, one giant leap for womankind.

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Am I becoming a junkie?

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.

SickandalwaystiredAzathioprineIn 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.
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Why Chronic Illness leads to Loneliness

I think it’s true to say that all chronic illnesses have one symptom in common: Loneliness.

For me, it can be one of the worst symptoms of the lot, often battling it out with Pain and Fatigue to ‘win’ the day and get one over on me.  For healthy, socially active and ‘other side of the bars’ people, it must seem odd that a state of mind could ever pull top trumps on a physical pain, but in many ways it does.

To understand how it’s probably best to dissect each symptom: surgical gloves at the ready!

Let’s start with Chronic Pain.  In whatever wonderful form it takes, there’s no disputing that this one is unquestionably an evil bastard – unrelenting and utterly vindictive.  It takes no prisoners and gives no time off for good behaviour.  I won’t woffle on about just how bad Pain can be, as I’ve already covered that here.  And here.

But Pain (in its simplest, non-chronic form) is a widely known entity.  There isn’t a person alive today who hasn’t felt its wrath, from a grazed knee and pesky splinter to a twisted limb and broken bone.  And let’s not forget childbirth – the mother of them all!

This shared understanding of Pain makes it socially acceptable: it can be openly discussed and easily emphasised with.  No GP will ever panic if you tell them about Pain, they’ll just reach for the prescription pad (or keyboard, these days) and bombard you with drugs.  In the case of Chronic Pain (or mine at least), most of these pain ‘killers’ barely scratch the surface; they’re as effective as a hit man with a cast iron moral compass.  But at least for Pain there’s plenty of meds and it always makes me feel slightly proactive to pop a pill.

Then there’s Chronic Fatigue, an equal to Pain in every way.  Real, wall-hitting, concrete-encasing, treacle-plodding Fatigue is the undisputed Queen of All Bitches.  It drains the life out of life and the fun out of everything.  But I’ve already covered my hatred of Fatigue here.  And here.  And here’s my Top 10 Things That Fatigue Isn’t list.

Unlike Pain, however, Chronic Fatigue has to be experienced to be truly understood.  It is not the same as tiredness (that everyday, run-of-the-mill stuff that everyone feels) and nothing else compares.  In my opinion, Fatigue is a powerful force for evil: The Dark Side, Dementors, Death Eaters and The Eye of Sauron all rolled into one.  It’s impossibly hard to fathom for those with bounce and vigour and this makes empathy rather thin on the ground.  There is some, however, as  Fatigue can make you look like the walking dead and it’s obvious to all that you’re really not feeling great.

Sadly there are no pills for Chronic Fatigue, but it can (according to the ‘medically’ trained) be aided by rest.  And taking it easy.  And learning to pace yourself.  Please just excuse me here while I roll my eyes.  What all this Fatigue and resting and spending time on your own does lead to is… the actual point of this blog.

Loneliness: an entirely different type of beast and the Satan of Symptoms.

For me, Loneliness is something that sweeps in and out of my life, like an all-consuming surge of water in a particularly menacing storm.  Whether it comes from nowhere or accompanies a flare, it always takes me completely unaware.

It creeps up on me whilst I’m focussing on Pain.  It slinks into the room while I battle Fatigue, filling up every last bit of space until I feel I can’t breathe.  It sits beside me when I’m resting, invading my thoughts and slowly drip feeding negativity into my brain.  It’s as if the worst of my insecurities and crippling fears are joining forces, playing games with an already fragile mind.

It’s hardly a surprise that Loneliness stands shoulder to shoulder with Anxiety and Depression.  They’re like a small coven of witches all hell-bent on dragging me down.

Yes, Loneliness is a bleak and terrible place to find yourself: dark and isolated and a million miles from everything that feels familiar.  It has the ability to transform any environment, no matter how safe and secure and make it feel empty and odd.  It’s the unsettling feeling that something is ever so slightly out of place, but you just can’t put your finger on what or why.

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Loneliness for me is like looking out at the world from behind a set of bars.  It’s seeing life carrying on around me, life carrying on without me.  And however much love may surround me it doesn’t change the feeling that I am completely alone.

In part that’s because it’s true.  Loneliness is something that I often feel and think about but very rarely discuss with anyone.  Partly because I don’t want to cause offence to those who are always by my side and partly because I don’t think anyone else would really care.  Maybe I’m wrong, but I don’t think so.

The worse part of Loneliness is feeling that it’s so damned obvious that everyone around me should be able to spot it.  I really, really want someone to notice how I feel, but of course, it’s as invisible as all the other symptoms so no one ever will.

Even my rheumatologist doesn’t.  He’s certainly never asked me whether I feel utterly alone with the collection of diseases it’s his job to treat; he couldn’t be less interested in my state of mind.  All he wants it for me to take my meds, never query his opinion and turn up once or twice a year to be ticked off his ‘to see’ list.  My new GP also steers clear of Loneliness.  Maybe that’s because she can’t afford to open the floodgates and release the tidal wave of tears that’ll inevitably come.  She knows it’ll be nigh on impossible to replug that dam in a 10-minute allocated NHS time slot.

So maybe my worst symptoms come down to how much understanding and empathy they evoke.  This puts Loneliness on the winning podium as how can there be empathy for something when no one even knows it exists?

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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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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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