Alive. Kicking. Almost.

Oh dear god, it’s been more than a year since the last post.  There’s so much tumbleweed drifting around this barren landscape I call a blog that I can barely beat a pathway through to the ‘New Post’ button.

I do seem to be making a terrible habit of avoiding my screen and I’m not even sure why.  Every day I wake up with the very best of intentions.  Every night I promise that the next day I’ll definitely do better.  Procrastination in its finest form, I’m sure you’ll agree.  Sadly this terrible lack of motivation seems to have infiltrated almost every aspect of my day-to-day life.

Much like a petulant, sulking teenager, one day, Motivation simply gave me a withering look, rolled its eyes and then disappeared under a festering duvet.  Accompanied by (oh so easily led) Mojo, they both holed up in the dark, barely visible amongst piles of cushions, hoodies and assorted technology beginning with ‘i’. They blocked out the world (except for the WiFi, obvs) and slept like the dead, surviving on nothing more than carbs, Spotify and Netflix.  Sunlight was met with shrieks, hygiene was minimal and conversations consisted of no more than one syllable.  Earphones kept all pleads, threats or bribes at bay.

It was neither a battle or a war I could win.  I’m a mother of a teenager, I knew that.

To make matters worse, at the exact time Motivation descended into pubescent hell,  my ‘Oomph’ simultaneously went into hibernation overdrive and Creativity went AWOL – last official sighting, 28th May 2017.  I put that last deserter down to writer’s block on a gargantuan scale.  The Trump wall of writer’s block, if you will.

Like I said, this last year really has been procrastination in its finest form.  To highlight just how bad it became, both my 2017 and 2018 New Year’s resolutions were to try to write more on my blog.  That panned out, clearly.

Come to think of it, my other three resolutions for 2017 and 2018 also proved something of a non-starter.  They were: to start exercising more (and when I say more I mean to actually start); to make the time to meditate (instead of watching trashy but extremely enjoyable TV); to sell everything I don’t need on Ebay.  Needless to say, my yoga mat was last seen loitering on top of the wardrobe, my Headspace membership expired with an embarrassing lack of use and my Ebay account has been as badly neglected as this blog.  Fail, fail and epic fail.

There is, naturally, a valid reason for all the tumbleweed and radio silence.  It’s called life, and it’s mainly been shit.  I’d go so far as to say that life has completely drained the last jot of energy out of me.  If the last year was put on a spectrum ranging from ‘Rainbows and Unicorns’ through to ‘Complete and Utter Misery’, I’ve probably been hovering right around the ‘Big Dark Hole’ mark.  That’s somewhere between ‘Up A Creek’ and ‘Where Exactly Is The Light At The End Of The Tunnel?’  Nope, not a flicker of a rainbow or a bleeding bloody unicorn insight.

Daily existence has mainly centred around pain, with some exhaustion, frustration, upheaval and therapy thrown in for good measure.  Then there’s been the depression, with a side helping of despondency, debt and despair.  Oh yes, and a little bit of death, like a sprinkle on top.

A right barrel of laughs it’s been.  A ‘fed up/screw everything/ I give up’ type of year in which I just haven’t felt engaged enough with my brain to type anything worth reading.  Certainly, nothing that you, most lovely reader, would want to digest.  That said, other people’s misery does have a wonderfully warped way of giving perspective and cheering the soul, so perhaps I’ve done you all a massive disservice.

Anyhow, I’ve decided that things need to improve, at least on the blog front.  So I’ve dragged a stinking Motivation and Mojo out from under the duvet and slung them in the shower.  Oomph has been given a triple espresso and Creativity has been frogmarched back from the wilderness and shackled to the keyboard.  Now we’ll just have to see how that all goes.

So thank you – to everyone who hasn’t unfollowed me, to all those who’ve recently shown their support and for the truly lovely comments that have helped to remind me why I started the blog in the first place.  It’s a mixture of all of the above and my therapist’s steel-capped boot up my backside that’s (hopefully) got me back on track.

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Day 96: well, that’s that then

After reporting my last set of dodgy results to the rheumatology hotline two days ago, I picked up a voicemail today telling me to ‘stop taking my methotrexate straight away, arrange another blood test for next week and then give them a call – leaving a message if I couldn’t get hold of anyone.’

That was it.  There was no discussion about reducing my dosage again; no explanation about why my bloods were behaving erratically; no ‘we need to see you to talk about your options’;  no reassuring me everything was in hand; no nothing. Hell, they didn’t even get the right meds.  The last time I checked I was on azathioprine, not methotrexate.  It’s rather disconcerting when the people in charge of your health can’t get even the basic facts right.

So here I am right now, a mixed bag of emotions ranging from frustration and disappointment to anger and relief.  I know, I sound like the character line up for Inside Out.  Or should that be:Inside Lupus

The more observant among you may have noticed that Joy is missing…

First in the line-up is frustration: it took me a good four months to psych myself up to take the drug in the first place, not to mention the endless weeks after I started, when I felt like absolute shit.  This all feels like it was for absolutely nothing.  The disappointment is because it’s only very recently that I’d finally started to feel the benefits – and it was giving me a sense of hope.

Then there’s the anger because I can’t believe the prescribing, monitoring and stopping of a medication like this is handled in such a haphazard, ‘no one really gives a damn’ way.  Come to think of it, I’m not even sure my care team would have noticed something was up if I hadn’t called to let them know.  Slightly disconcerting.

And then finally there’s the relief, which admittedly seems to contradict the three emotions that go before.  Only yesterday I read a blog that reminded me about the links between taking these chemo drugs and the increased risk of cancer further down the line.  I had a mini meltdown (the 100th of the week) and all my worries that I had to block out just so I could swallow the first pill came flooding back.  I started to second, third and fourth guess the decision I’d made.  What if I was ‘borrowing time’ now to control my Lupus pain, but as a result, would increase the chances of that ‘time’ being snatched back in the future by a deadlier disease?

Of course, it’s an unproductive way to think as no one can predict what lies ahead and there’s such thing as a correct answer.  I guess the question is: what price do you put on the quality of your present life and what risks are worth taking?

I feel quite wrung out by the whole experience, but I guess it was worth a shot. Being a person who believes that everything happens for a reason, I’ll just put it down to my body deciding this wasn’t the right treatment for me.  How very rational and Zen that sounds, even to me!

So until someone with a medical degree tells me what happens next, it’s onwards and upwards, I guess.

If you want to recap on the whole azathioprine drama, it started from here: The Indecision MonthsDay 1, Day 3, Day 7Day 10, Day 20, Day 60 and Day 94.

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Day 94: what do you mean I’m abnormal?

Four weeks, multiple blood tests and endless phone calls later and I get the feeling things aren’t going so well.  Well, isn’t that just typical.  My energy levels are finally up and the pain’s under control, but lo and behold my treacherous body just ain’t having none of it.  I ask you, if you can’t even expect a bit of loyalty from your own skin and bones, what hope is there.

I’ve had one set of dodgy blood results after another.  One minute I’ve got a low white cell count and poor liver function; the next my white cells are on the up but my bilirubin levels are elevated; the next my liver is feeling happier but my white cells are dropping off and as for my neutrophils, well they’re now going into free fall.

For the record, I haven’t got the foggiest what’s actually going on inside me right now.  I know I should probably be all clued up on what’s what, but I haven’t the faintest idea what a neutrophil is, does or even looks like. Or, for that matter, why my GP is currently freaking out because I should have more.  Her last message on my voicemail told me to call her back immediately to discuss my ‘abnormal results’.  Sugar coat it why don’t you.  Naturally, this sent me straight back to panic station central.  I’ve decided, I don’t want to be sick anymore. Can someone stop this train and let me get off?

I probably wouldn’t be so alarmed if I thought my rheumatologist gave a damn – but it definitely doesn’t feel that way.  From where I’m sitting, it seems that he gave the OK to pump my body full of chemotherapy, then, job done, buggered off to do something more fun himself.  Like golf perhaps, or a spot of fly fishing.  After years of seeing him religiously every 6 months, I’m now not scheduled to check in with him again till January 2017.

What the hell? Another 8 more months of this stuff and I could have grown an extra limb or a set of gills. Or turned a fetching shade of radioactive blue.  I’m thinking something along the lines of Jennifer Lawrence in X-Men, just with smaller, post-breast feeding boobs and considerably less muscle definition.

Rewind to Day 60.

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Life with Lupus? It’s all a bit sh*t

So what is it like to live with Lupus? Good question and thanks for caring enough to ask; most people never do.

Lupus is an unpleasant little disease that drains the life out of your body and time out of your life.  It can result in frequent hospital visits, constant tests and enough medication to make you rattle.  It can cause teeth-grinding levels of pain, uncontrollable exhaustion, terrible brain fog, facial disfigurement, dark thoughts, loneliness and an immense feeling of loss.  And that’s just the start.

In short, Lupus is a disease that can rob you of the life you planned to lead.  Future plans have to be reassessed, expectations lowered and energy levels micro-managed down to the very last ‘spoon’.

This may sound like a rather dramatic synopsis, but it isn’t.  It’s actually the harsh reality many Lupus sufferers have to deal with every single day.

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A dog walk too far

At the start of the week, I looked in the mirror and realised my total lack of exercise is starting to play havoc with my waistline.  Too many comfort calories and that muffin top is threatening to develop into a brioche.  And that, if left unchecked, could very well morph into a farmer’s loaf.

Time to get up and moving, I told myself.  On Monday I wheeled out my bike, brushed off the cobwebs and went out for a very gentle cycle.  All good so far;  I was still standing, all limbs working and one whole biscuit’s worth of calories burned off.

So the next day I woke up brimming with good intentions.  And then made the fatal mistake of thinking I could do more than I can.  Silly me, why do I keep letting my wishful thinking hijack my common sense.

I did the school run by foot and decided to live dangerously: I took the long way home. I’m only talking about a few extra roads and a quick detour via the park, but oh boy, what a difference an extra half an hour can make.

By the time I’d carried a happy, wet pooch through the house, I was fit for absolutely nothing. Yawning, exhausted and zonked out on the sofa.  I never learn, as my husband was quick to remind me.  ‘I only suggested you walk to school and then come straight home’, he pointed out, ‘not traipse around the entire village’.

Clearly, it was a moment of pure madness and one I’ve paid the price for all week. Argh. It makes me want to jump up and down and scream that I can’t do something as basic as walk the dog without knocking my body out.  All that effort to work off one sodding biscuit on Monday and I’ve probably eaten an entire packet since.

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I’m not lazy, I have Lupus

One of the more annoying things that people can say to me is ‘wouldn’t you feel much better if you exercised more?’  To me, that sounds an awful lot like ‘heave your untoned arse off the sofa and stop lazing around every day’.  But maybe I’m just being paranoid?!

Hmmmmm, exercise they say?  Now that you mention it, it does seem like the most obvious of cures.

Silly, silly me, how could I – or my doctors, come to think of it – not have thought of this sooner.  Let me flush all these unnecessary prescription pills down the loo, skip to the gym and body pump this chronic disease right out of my system.  Perhaps I could jump up and down, take a run, climb a rock, go for a swim or crunch my body into submission.  Who knows, once I’ve zumba-ed my way back to perfect health, maybe I’ll be able to walk on water, or, better still, turn H20 into wine!

I nod and smile through gritted teeth. Yes, I agree, it would definitely be good to do more regular exercise, but sadly that’s not always an option for me.  Most well-meaning and tactful people stop dishing out advice at this point.  But there’s always one. The one that never knows when to reel it in and zip it up. These people I could happily slap.

But why not, they want to know.  Exercise is ever so important they say.
Hold the press, groundbreaking theories being formed here:  Had I considered, perhaps, that it is my very lack of exercise that’s making me ill?

Had you considered, perhaps, that you’re getting on my very last nerve?

Have I tried a particular type of yoga? they enquire.  It’s called the Born Again Dying Swan and it’s all the rage.  Originates from the monasteries of ancient Tibet, apparently;  best-practised butt naked and balanced on a 2-foot pole in temperatures of exactly 89.9 degrees. Cures cancer and better than botox, so their best friend’s mother’s nutritionist said.

OK, enough now. I know in your head you’re trying to mean well, but out here in my world, you’re not.  Please just SHUT UP.   Why? Because in this instance you have absolutely no clue what you’re talking about.

Clearly, I know that exercise is good for you; it stops you getting fat and keeps you healthy.  Yes, I also know it can make you feel energetic, pumped up and happy to be alive.  But here’s the bit you don’t get.  For some people (that would be me) it can also wipe you out and leave you in a whole heap of pain.  A gentle walk or an overly ambitious bout on a yoga mat can cause joints to swell, nerve ending to burn and limbs to feel like they’ve been shrouded in concrete.  It can make my arms hurt and my bones ache.  And as for those incredible little endorphins that exercise releases? Believe me, when I tell you they’re simply no match for out-and-out, dog-tired exhaustion.

So yes, exercise is good and healthy and fun.  And yes, moving faster than a sloth on a regular basis would no doubt do wonders for my pathetic muscle mass and wobbly bits. But here’s the issue I have: there is simply no way of telling how much is too little or too much.  An extra 10 minutes in the wrong direction with the dog can be my undoing; there are no warning signs and there’s no going back.

So please people, quit with your well-meaning advice and consider this. Living an often sedentary life is most certainly not a life choice.  It is frustrating, boring and incredibly depressing.  Every single day I miss what my body used to be able to do and it often makes me cry.  In the good old days, I used to spin, swim, gym and downward dog with the best of them. Hell, I even kickboxed my way around the mat once upon a time.

So believe me (and every other medically induced couch potato) when I say nothing gets our backs up more than being told exercise will ‘make us better’.  No one is more clued up on possible treatments and ‘miracle cures’ than us, and if it were as simple as that, don’t you think we’d be out there pumping, squatting and peddling along with the best of them.

A little bit of sympathy and understanding, on the other hand, would go along way to making us feel better.  Ditto for flowers, chocolates, and dropping by for a cup of tea when we’re feeling low!

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Good doctors are an endangered species

From personal experience, I know just how long it can take to find a really good doctor. When I say really good, I mean one who’ll not only listen, pass the tissues and nod sympathetically in all the right places but also act on what you say and actually get something done.

Whether you’re at the local surgery or in presence of the lesser-spotted and rarely sighted rheumatologist, I find that half the time, these medically trained mortals are an impatient bunch. They sit, stopwatch in hand waiting to shoo you back out the door as soon as your allocated time slot is up.

As it is, I aways feel like a raving hypochondriac, as I hurriedly work through my pre-prepared lengthy list of ‘new’ symptoms.  During most appointments, no matter how fast I talk, I barely manage to get past the ‘Top 3 things I absolutely need to ask’. My handbag is now full of crumpled up old scraps of paper covered in unanswered questions and angry-looking doodles.

I often walk away from appointments feeling irritated and let down.  I rarely feel any more clued up (on why I feel so shit) than before I went in.  Many times I’ve been in floods of tears by the time I’ve reached the car; on one embarrassing occasion, I didn’t even make it to the parking ticket machine before the snivelling began.

I had assumed that once my Lupus had been diagnosed, the whole doctor situation would improve.  Back then I still had the optimism of course.

My first rheumatologist was absolutely useless.  Perfectly sweet and highly qualified she may well have been, but with all the personality of a bag of limp lettuce.  More worryingly, it seemed to me that she had little idea what to do regarding my treatment, and no obvious intentions of coming up with a plan anytime soon.

Every six months I’d return to her office and list the same issues and complaints; problems which were, unsurprisingly, getting worse with every visit.  Her response was always the same: she’d mutter and mumble about my bloods and tell me she ‘understood’. Now, ‘nicey-nicey’ isn’t really my bag at the best of times; certainly not when I’m looking for some decisive medical intervention.

The extent of her ‘treatment’ was recommending that I ‘stretch out’ the crippling pain in my hips when it got too bad.  Give me strength.  I didn’t wait for over 2 hours on a suspiciously sticky waiting room chair (not to mention many years just to get the appointment) to be told that.  If I could have fled the scene of the crime undetected, I would have throttled the useless woman then and there.  Luckily for her, I calculated that with my pronounced limp, I’d have likely been apprehended before I even made it as far as the nurses’ station.

When the stretching didn’t fix the pain (no medical degree needed to realise that one, Sherlock) she sent me off for a six-week ‘getting back on your feet’ physiotherapy course at the local old people’s home hospital. Dear god in heaven, what a truly hideous experience that turned out to be.  I was easily the youngest in the room by at least 40 years, yet still the only one unable to lift my legs up off the mat on command.  Pain and humiliation in one.

It was only when I mentioned to my Lupus nurse that I wasn’t exactly ‘enamoured’ with my allocated rheumatologist, that she told me I could request a transfer via my GP.  I hadn’t even known that was an option.  She recommended I try a different, slightly more pro-active doctor in the department i.e. one with less small talk and hand wringing and more ‘jump to it’ action.

A couple of months later I rocked up to see my new rheumatologist.  He promptly sent me off for an MRI, which in turn confirmed I had massively inflamed and swollen hip joints and a spattering of arthritis to boot.  Clearly, no amount of gentle stretching or cycle classes for the over seventies was going to sort that out.

A few short weeks later I was sent for a cortisone injection into each hip; a week after that I was practically pain-free and could finally walk again.  Halla-bloody-lullah.

That’s not to say the current rheumatologist is perfect of course, far from it really.  To this day I have still to get through my list.  And I often walk out frustrated and on the verge of tears.  But I guess the important thing I have to remember is that at least I can walk out now.  If I’d stuck with my first rheumatologist I’d probably still be ‘stretching it out’.

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