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.

Spinning right out of control

November 23, 2016November 24, 2016 ~ Rachel ~ Leave a comment

As weekends go, the last one wasn’t really the best. Actually, it was probably one of the worst, in the grand scale of things. Recent bugs, a helping of stress, cold weather and general exhaustion proved too much for my useless body, so it decided to teach me a lesson I wouldn’t forget in a hurry.

When emptying the (what felt like 100th) load of washing on Friday, the room suddenly tilted so violently, I nearly fell head first into the basket of wet towels. Strange, I thought, best I sit down for a bit. By the time I made it to the sofa, everything was spinning around me at quite an alarming speed. I could quite easily have been sick there and then, but knowing the cream chair covers would require immediate cleaning proved enough of a motivation to kept my partially digested lunch where it belonged.

Feeling as if I was walking at a right angle, I slithered up the stairs (past a rather alarmed looking son) and made it to the safety of the bed. Lying down didn’t help much, in fact, it made things worse. The insides of my head were now spinning too, and in the opposite direction to my body. I felt like I was trapped on one of those horrible tea-cup waltzers.

When I woke up an hour later, it was dark, I was sweating like a beast and I needed the loo. The trouble was, however, as hard as I tried, I couldn’t seem to get up. All I could manage was to shuffle a bit and that just made the world tip. Panic set in – big time. I came to the conclusion (as you do) that I might have had a stroke. Either that or the vertigo was back with a vengeance.

For those who think vertigo is merely a fear of heights, it is not. Vertigo is a horrible, nightmarish infliction that can disrupt and ruin your life for months on end. The thought of it returning fills me with a constant dread.

Trapped under the duvet, my only option was to ring downstairs for help. Thank god for the ever-present mobile that was finger distance away. It took four unanswered calls and a feeble “help me” before the cavalry came charging up the stairs. By this stage, I was beside myself. I couldn’t sit up, stand up or walk; my body simply refused to comply. Then the weeping and wailing kicked in, and, as we all know, once you go down that road it’s impossible to stop until you run out of clear airwaves to breath through.

It’s hard to explain the range of emotions when pain, panic, wretchedness and fear collide. Feeling so utterly helpless is a scary, scary thing. Not understanding what the hell was happening, or why it had come on so fast, made it scarier still. At that point in time, I was utterly convinced it was never going to stop, or, worse still, if I went to sleep again I might never wake up.

It took a day in bed before the room eventually stopped spinning. It took another 48 hours before my body was functioning at a relatively ‘normal’ level again. Ridiculous as it may sound to some (though I know many others will certainly relate) for days afterwards I felt as if I’d undergone a major trauma. If I’m honest, I’m still slightly shell-shocked by the whole thing now, and more than a little unnerved.

I have to say, it’s at times like this that I really hate how life can be. And I worry about what exactly the future might bring.

Get outta of my head

October 24, 2016October 24, 2016 ~ Rachel ~ 2 Comments

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.

It’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.

When diagnoses are a bit like buses

April 22, 2016September 29, 2016 ~ Rachel ~ Leave a comment

My journey to diagnosis was a long and frustrating slog, to say the least. Partly because it’s a very difficult thing to diagnose and partly because no one would bloody listen. I often felt tempted to just give up trying to find out what was wrong. On a regular basis, I lost all faith in the medical profession.

Looking back I now know that my Lupus kicked in years ago. The first sign was the terrible pains in my legs and hips; some days they got so bad I could hardly stand up. I went to our local doctor in Australia (where we were living at the time) but he didn’t have a clue. He sent me off for x-rays but nothing showed up. He didn’t really bother to investigate beyond that, even though the pain continued.

Eventually, I found myself a chiropractor, who told me I had one leg shorter than the other. Diagnosis completed, as far as she was concerned. I was then sent to a podiatrist who made me a heel lift to wear in all my shoes.

What a proud Forest Gump moment that turned out to be.

Of course, no one wears shoes in Australia, they wear thongs (that’s flip-flops to you and me), so it doesn’t take a genius to work out you can’t wear a heel lift on a Croc. So painful hips, one leg longer than the other and then limited to trainers in the 40-degree heat. Oh, how I laughed.

Of course, the heel lift did nothing to help the underlying issue that was Lupus. Funny that seeing as being a bit stumpy in the limb department has absolutely no bearing on one’s immune system.

Adding to the drama further I then suffered a very miserable 3-month bout of vertigo. The full on type where the world spins around you, not the fear heights. Heel lifts no longer become such a concern as I could barely stand up without falling down.

This was later followed by a night where breathing became tricky and I lost feeling in both my legs. An ambulance was called and I was whisked off to the local A&E. The doctors were once again clueless. They tried to put it down to me overexerting myself at the time. The fact that at the time it happened I was calming sitting down, eating a yogurt and watching Greys Anatomy. So nothing ever came of that episode either, except of course an $800 bill in the post for the pleasure of my ambulance ride. Australia sure isn’t the cheapest place in the world to be sick.

Fast forward a year and I’m back in the UK. Out of nowhere my fingers suddenly started to go numb at the drop of a hat. One minute totally normally, the next I’d have a full set of bloodless digits; they looked like the hands of a corpse that’s been washed up after several weeks at sea. Not pleasant at all, but BINGO, suddenly I had my first diagnosis: Raynaud’s phenomenon.

Dodgy hips, random pains and unexplained bouts of tiredness continued, and then fast forward another year and my eyes were now dry and burning and my mouth felt like a forgotten flip-flop in the Sahara Desert. BINGO again. It’s Diagnosis Number 2: Sjögren’s Syndrome. Bit like buses these damn diagnoses.

I honestly can’t even remember how, why or when they reached my final diagnosis of SLE. For some reason, my GP failed to tell me she was even testing my blood for other things. So I suppose it stands to reason that she would also forget to tell me what they had found out.

The first I knew of it was during a nurses appointment at the hospital. Just a simple check up I thought, after having my numb, wrinkled fingers x-rayed and my dry, itchy eyes scanned.

So why am I seeing you today? I enquired of the lovely lady in blue.
I’m your Lupus care nurse, she said.
Why do I need one of those? (sometimes it takes a while for the penny to drop)
Because you were diagnosed with Lupus a month ago, she said.
Oh. Right. Good to know.

Queue much crying by the time I’d reached the car.