Grumbling Stomach v Patient Care

November 10, 2018 ~ Rachel ~ 4 Comments

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?

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

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

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

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

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

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

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

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

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

So I looked a little closer.

And….holy shit.

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

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

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

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

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

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

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

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

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

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

Vampires, superpowers and surviving the summer

May 28, 2017May 29, 2017 ~ Rachel ~ 1 Comment

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 deci Sickandalwaystired.com Sun dedly 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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New Challenges & Painful Consequences

August 1, 2016September 28, 2016 ~ Rachel ~ Leave a comment

When visiting Thailand, there’s no time on the agenda to be aching, sore or ill, so during the last couple of weeks, I have thrown myself into life with great gusto. As those motivating, life-affirming signs always tell you to do, I lived every day to the full; as it were my last, in fact, and to hell with the consequences.

I took a longtail boat out in the pouring rain and explored the islands off the Krabi coastline. I discovered Phra Nang Cave – a shrine of wooden penises! I went snorkeling off of Chicken Island, though sadly there were more Chinese tourists flailing around in the water than pretty fishes in the sea.

I leapt from the top of a tree and into the unknown, soaring above the leafy canopy of a jungle, a stomach-churning 100 feet above the rainforest floor. I said a silent prayer and abseiled down the trunk of an incredibly tall tree.

I fed bucket loads of bananas and sugar cane to some rescued elephants. I stood waist-deep in murky water, washing and scrubbing their tough, bristly skin. I fed carrots to giraffes and stroked their noses; one sneezed on me. Very pleasant!

I experienced the lax and rather unofficial/unpredictable rules of the local road, clinging onto the back of a speeding moped. I visited bustling night markets and had the dead skin on my feet nibbled off by 100’s of fish. I had my knotted muscles and painful joints pummelled to within an inch of my life, and my skin scrubbed down, oiled up and kneaded to that point where pleasure starts to merge into a rather necessary pain. I ate a lot of Thai Green Curry.

And then for the pièce de résistance in this bucket list of physical challenges: I scaled a waterfall. Yes, that’s right, me, a person who often has difficulty making it up a flight of carpeted stairs. I clambered up and down some very steep rocks into oncoming cascading water; barefoot and by hand, no less.

Sadly this impressive feat has nothing to do with a miraculous cure or some newly acquired superpowers. Rather it was down to the limestone mineral deposit on the rocks at Sticky Waterfalls (officially known as Buatong or Bua Thong waterfalls) that turns even the most uncoordinated person with zero balance and climbing skills (that would be me) into a sure-footed, Spiderman-like superhero.

I’m now half way through the trip and it’s time to take regroup and recover; time to deal with those consequences I mentioned at the start. I’m used to the drill and it’s nothing I haven’t experienced 100 times before. But oh boy, why do those consequences have to be such a brutal wake-up call.

I’m into the fifth day of ‘post overdoing it’ agony: bone-jarring, head to toe pain, hypersensitive skin, inflammation in single every nook and cranny and the life-sapping lethargy that makes every set of stairs seem like a mission too far.

Remind me again how the hell I managed to scale a waterfall?!

Of course, I know my body will settle back down in time and forgive me for taking the proverbial. It always does, eventually. I suspect, however, it might take a little longer than normal to bounce back this time. In hindsight, perhaps the Spiderman antics might have been taking things a step too far.