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 is 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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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 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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