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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Vampires, superpowers and surviving the summer

The UK is currently celebrating something of a rare phenomenon: the skies are blue, the temperatures are up and, for the first time in an eternity, the bank holiday weekend isn’t a total washout.

I love this weather, I really do.  Everything always seems so much easier to achieve when the sun’s out.  Sadly, however, this weather doesn’t really love me.  Aside from the heat making me feel triply sluggish, going out in the sun can be an incredibly risky business indeed.

One of the many annoyances of having Lupus is being extremely sensitive to sunlight; this is called photosensitivity.  For many, exposure to sunlight can make symptoms – such as rashes – much worse.  In my case, the pigmentation on my face darkens with lightening quick speed.  A quick, unprotected trip outside and I look like I’ve been stamped on the forehead with a triangular branding iron.

The strange shape of this pigmentation is something of a mystery, both to me and the dermatologist who checked it out.  I’m guessing that either I fell to earth from Krypton and have undiscovered superpowers, or it’s some sort of magic inner eye. Either option would be acceptable and more than welcome.

Unusual markings aside, if my ridiculously sensitive skin is exposed to the sun it soon starts to tingle and feel like it’s on fire. Well, I say fire, but actually, it’s more like a freezing cold case of prickly pins and needles.  I imagine this is how vampires feel – or at least it’s how they are portrayed in the Twilight films, when their skin glows and sparkles in the sunlight.

Spending too much time in the sun can also bring on a Lupus  ‘flare up’ and make me feel downright grotty. This can be accompanied by full-on flu-like symptoms that can knock me out for days.

Taking Azathioprine makes me that much more sensitive still.  I reckon my skin now starts to burn before I’ve even put my shoes on and headed outside.  Take this morning for example.  I walked around the garden once and sat down for 5 minutes with a cup of tea.  Now that I’m back inside, my arms are already cold, tingling and deciSickandalwaystired.com Sundedly sore.  This is both frustrating, annoying and painful, in equal measures.

Yes, it’s safe to say the days of dousing myself in tanning oil and sizzling like a sausage on the beach are long gone.  I shudder at the thought of all the damage I must have caused my young skin in those heady, uneducated days of the 80’s and 90’s, when everyone smelt like Hawaiian Tropic and looked like overcooked bacon.

These days it’s all about finding a fake tanning product that gives me the right colour.  I’m aiming for a ‘realistically sunkissed’ shade rather than a ‘baked in a tandoor’ Trump toxic glow.

The pluses of being so sun sensitive are that I have no choice but to stay out of the sun as much as possible; this helps to keep the crows feet at bay.  On the negative side, however, the additional sensitivity brought on by taking Azathioprine increases the risk of skin cancer.  A pretty major ‘negative’ I know, but one I really have no choice but to take. These toxic drugs I pop every day are helping to make life much more bearable and relatively pain-free.  It’s all swings and roundabouts, as they say.

When living the life of a vampire, all you can really do is be sensible, resist the urge to top up your tan and make sure you protect yourself any which way…

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Day 274: hibernation here we come

Blimey, I’ve just counted and it’s 139 days since the last ‘Azathioprine update’. That’s 4 blood tests, 4 lots of results, some random appointments and a whole lot of readjusting since I went back to ‘Square One’ in July.

On the whole, it hasn’t been too terrible and there’s still no green, scaling skin, newly grown limbs or unusual superpowers to report.  The worst of the joint pain is still being held at bay (hurrah) and I’m definitely a hell of a lot more mobile than I was this time last year, or the one before that, or the one before that…

Fatigue-wise, it’s all much of a muchness, but that was always going to be the case. There is NO drug, quick fix or cure for chronic slothitus fatigue, more’senergy-meter-sick-and-always-tired the pity. What I have learnt, or rather, what I keep learning, but never seem remember, is this: I can manage day-to-day as long as I do absolutely nothing.

Ok, that sounds a bit bleak, I admit.  What I mean is, as long as I don’t try to push myself, be overly ambitious, think I’m more capable than I am or do anything resembling reckless, I can, for the most part, get stuff done.  That said, I still have very regular relapses when energy levels are at zero, zip, zilch and nada.

The approaching winter is, however, definitely throwing up a few curve balls.  During the last 6 weeks or so I’ve bounced from one thing to another, never quite having the chance to come up for air or recover in between.  Is this down to the Azathioprine?  I’m not entirely sure.

Having put the infection and headache behind me, I promptly came down with the flu.  Not that I actually realised it was the flu, until I was already halfway through the whole aches, pains, coughing and wretched snivelling. That, in itself, just goes to show how many horrible symptoms someone with Lupus will pass off as ‘normal’ before they even entertain the idea that something else might actually be wrong.

Just for the record, I did line up with all the OAPs in the village for my flu jab this year, but clearly, that wasn’t worth the nasty pain in the arm it gave me.  Either the head honcho at the Influenza Immunisation Programme picked the wrong strain to target this year or my body plans on surrendering to every single virus comes along.

With a cough still lingering a couple of weeks later, I’m now wondering just how well my now suppressed immune system is going to fare this winter.  I’m practically housebound as it is, and when I do go out, the cold weather shocks my body into one sort of head-to-toe meltdown after another.

So I choose to stay inside, dress in fleece onesies and whack up the thermostat.  A perfect solution, you might think, except for the fact the central heating seems to bring on a whole host of other problems: even drier eyes, terrible headaches, sniffs and sneezes, additional tiredness, wooziness and increased brain fog.  But turn off the heating and the Raynaud’s and general miserableness kicks in.

I think that’s what you call a lose-lose situation.

So, what pray is the answer?  Rethink my choice of drugs?  Completely avoid civilisation?  Wear a full germ resistant biohazard suit?  Or perhaps I should just do like a hedgehog, disappear under a pile of leaves and hibernate till Spring?

Either way, I am slightly concerned that by the time the trees have regrown their leaves in 2017 I’m going to be translucent in shade, socially inept and adding muscular dystrophy to the list of woes.

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Get outta of my head

Today was the first day in over a week that I woke up and didn’t wince.

For the last 8 days I’ve had a killer headache that just wouldn’t shift. A migraine-like nightmare that has made me sound sensitive, light-sensitive, heat sensitive, people sensitive and living sensitive.

headache-sick-and-alwaystired-comIt’s felt like a 100lb block is crushing down on my scalp, sharp spikes are stabbing into my eye sockets and a metal band is wrapped around my forehead – a metal band that some sadistic little bastard is screwing tighter and tighter into my temples every time I move.

This has made me feel nauseous, dizzy and as grumpy as hell.  It’s hurt to look, think and move, and as a result of this, I haven’t been able to really do anything or go anywhere. I’ve mainly moped from room to room, moaning a lot and clutching my head. Writing anything was pretty much out of the question, as sitting in front of my computer screen was like staring at an eclipse with my eyelids taped open.

Every morning last week, I opened my eyes, reassessed the pain levels and thought ‘shit, here we go again, there’s another day ruined.’  When there’s no end in sight and the tablets aren’t even making a dent,  8 straight days of headache can seem like an eternity.  That’s 192 hours, 11520 minutes or 691200 seconds of feeling like utter crap. For heaven’s sake, we’re told God created the entire universe in less time than that, including the 7th day when he sat back, relaxed and admired his work.

Sadly, I am all too familiar with the whole ‘headache’ scene.  I spent a large chunk of my childhood experiencing the varied delights that a migraine has to offer: flashing lights, dancing black spots, exploding head, spinning rooms and wall-to-wall puking. Thankfully I rarely get a fully blown migraine these days, although they have been known to creep up on me in seconds if I do something foolhardy.  Like, tilt my head back, for example.  Lesson certainly learned that particular day: never attempt to paint a ceiling.

A trip to the Vatican’s Sistine Chapel a few years ago also proved rather pointless, when I realised I was unable to look up and see the paintings on the ceiling – the paintings being the very reason for the visit in the first place.  Of course, by the time I’d walked a good 3 miles through museum’s long (and frankly boring) corridors to get to the chapel, my hips had long since given up on me and I had to limp into the room and have a sit-down.  Adding insult to injury, after lining up to touch St. Peter’s foot in the Basilica, and putting in a request for a cure, my health has only gone from bad to worse.  Seriously Pete, where’s the love?!

With Lupus, Sjogren’s, vertigo and a Chiari malformation all sticking the boot in, these days the headaches are pretty much part and parcel of my everyday life.  I would, in fact, be more surprised if an entire week went by ‘headache free’.  Keeping on top of this amount of pain requires the stashing of tablets in every pocket, bag, room and drawer in the house.  I batch buy every week just to keep up with the demand.  I’m pretty sure my local supermarket thinks I’m stocking up for one big Armageddon style hurrah.

Making life that little bit easier still, the listed side effects of both Azathioprine and hydroxychloroquine are… wait for it… headaches.  Seriously people?  Is there no break to be had here?

With Lupus being a disease that affects the nervous system, sufferers are statistically twice as likely to get these migraine-like headaches.  Lupus headaches, they call them.  Yes, someone obviously put a lot of time and effort into thinking up that name, didn’t they.  Tension-types headaches are also more prevalent.  I totally get that.  Having Lupus definitely makes me grumpy and tense.

The Systemic Lupus Erythematosus Disease Activity Index (SLEDAI) – a scoring system often used in Lupus research – describes a Lupus headache as a “severe, persistent headache; may be migrainous, but must be non-responsive to narcotic analgesia”.  Narcotic analgesics, by the way, are drugs that ‘relieve pain, can cause numbness and induce a state of unconsciousness’.  You’d think that unconsciousness would probably be enough to stop the pain, surely?

As ever, with such medical theories, opinions and statistics, there are ‘people’ who dispute the notion that people with Lupus could possibly suffer from a specific headache.  Dare I suggest these non-believers don’t have Lupus, don’t get the headaches and don’t have the first bloody clue.

Try living inside my head for the last 8 days and just maybe they’d have a fresh perspective and a totally different viewpoint.

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Oh, give me strength

Forgive me while I scream.

Back in August, I clocked in at the hospital for a check up with my Lupus nurse.  It was one of those ‘we understand, we care’ sort of appointments.  I told her how let down I felt by those overseeing my healthcare.  I mentioned I was concerned about my periodic bouts of doom and gloom.  I said I was worried the Azathioprine might not be doing its job.

Fear not, she reassured me, I’ll book you an appointment for 3 months time, that way I can double-check you’re ok and see if the meds are on track. Offer accepted and appreciated.

Then yesterday I received two letters in the mail.  The first informed me that my appointment in November has now been cancelled; they hoped this wouldn’t cause me too much of an inconvenience.  The second letter said my appointment had now been re-booked.  For 8th August 2017.

2000 and bleeding 17.  I admit I did a double-take on the year.  Then I swore.

How reassuring that one minute they deem it necessary to check I’m not wallowing in depression or taking ineffective meds, then the next I’m put on hold for another 10 months.

I’d like to say I was shocked to the core, but I’m not.

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Note to self:

You stupid girl.  The next time you feel like this crap, please drag your head out from under the cushions and pay attention to the following symptoms:

When your lungs feel starved of o2 and every breath hurts – it should not be ignored.  When it feels as if a boa constrictor is wrapped around your chest, crushing your ribs  – it should not be ignored.snake-sick-and-always-tired

When you wheeze like a smoker for no good reason – it should not be ignored. When your body feels extra depleted, done in and defeated  – it should not be ignored.  When your skin turns an even sicklier shade of grey – it should not be ignored.  When you’re hacking up mucus the colour and consistency of gloopy Ambrosia custard – it should not be ignored.

You silly, silly girl.  All these symptoms are not ‘normal’, even in your messed up world.  Quelle surprise, you have a lung infection.  And that, my dear, will not quietly disappear without a helping hand, no matter how deep into denial you dive.

So now you can add another eight little steroid tablets to your breakfast menu and wait to see if they do the job.  What’s that, you moan?  14 tablets with your granola is just too much to bear?  Perhaps you’ll remember that next time…

Look on the bright side at least.  Best case scenario: you’ll perk up and soon be back to your usual Lupusy self.  Worst case scenario: come the weekend you’ll have  bulging muscles and be ready join the ladies Russian shot put team.*  A result either way, it has to be said.

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* I jest, of course, these steroids don’t turn you into a super athlete overnight.