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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