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.  Everyday 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, my motivation simply gave me a withering look, rolled its eyes and then disappeared under a festering duvet.  Accompanied by my 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.  Ear phones kept all pleads, threats or bribes at bay.

It was a 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 my motivation descended into pubescent hell, my ‘oomph’ simultaneously went into hibernation overdrive and my 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); and 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 life 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 showed 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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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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What is the point?

Sometimes it feels that people are constantly telling me how best to ‘beat’ this thing.  Doctors, nurses, specialists, family, friends – all telling me how to get the illness in check and under control.  All offering up an opinion.  All offering up advice.  All telling me what I should be doing.  All reprimanding me for not doing what they say.

But I try to do what I’m told, I really do.

I rest.  I sleep.  I take it easy.  I take a break.  I rest.  I do things in moderation.  I don’t push myself.  I rest some more.  I pace myself.  And then repeat.

That last one’s the worst.  Pace yourself they all say.  How is one meant to ‘pace’ oneself in a normal, everyday life?  What about the kids and family and home and work and pets and school runs and sports fixtures and all the other crap that comes in between? How do you pace this little illness into that gigantic mix?  Please, someone, do tell.  What exactly is meant to give?

Even if I do make myself do all the above – the resting, the breaks, the endless sleep, it still gets me absolutely bloody nowhere.  All the pacing in the world and it achieves what?  A couple of ‘good’ days to get stuff done and then a week of feeling like absolute shit while my body struggles to get over the unexpected exertion.

Moderation.  There’s another word I hate.  I am sick to death of trying to live a life in moderation.  It’s like setting out to only ever achieve half of everything you want to do. For a task-loving, goal-oriented person like myself, this is the very definition of frustration.

Oh yes, while I’m at it, I’m also completely over being told I should of ‘learnt to know better by now’.  Two words to that one.  Bugger Off.

I did already learn long ago that this moderating, pacing and enforced rest doesn’t really work.  I get why those living in a logical think it would, but it really doesn’t.  I’ve learnt that truth the hard way – and on a regular basis, in fact.  Living like a sloth can usually buy a day or two, or a week tops, but that’s really about it.

But anyway, here’s the thing.  It’s not really the ‘learning’ to pace myself that I have an issue getting to grips with, it’s the acceptance that I have to do it at all.  The acceptance that there will always be limitations of one sort or another.  And with that comes the realisation: I’m never going to be able to climb a mountain, or walk for miles and miles along the beach, or hold down a full-time job, or even hit the town and dance till the sun comes up.  OK, granted, the mountain climbing was probably never going to happen, but it’d sure be nice to do all the rest.

What a dismissal, depressing and utterly uninspiring prospect this acceptance malarkey can seem.  Who in their right mind would ever want to do it?

So like I said before – seriously, what is the point?

Highs and Lows of Lupus

Yes, I am alive.

The daffodils have long since sprouted, bloomed and faded and I’m still sat here in my fleecy lined pants, waiting for the year to crack into gear and get going. Alarmingly this seems to be a bit of an annual thing now. I’m not sure if it’s down to age or the illness (or a bit of both) but one second I’m packing up the Christmas tree, next, I’m looking up from life and thinking ‘bloody hell, it’s half way to June already’.

During February, March and much of April I plodded along quite well – not quite bouncing off the ceilings, but pretty upbeat most days.  The pain was reduced and for the most part, the exhaustion was fairly manageable. Little Miss Hope even raised her head there for a while.  Bless her for trying.  Clearly, she’s one of the more optimistic of the Little Misses bunch.

Then, 3 weeks ago, a variety of shit happened – the sort of stressful, unwanted shit that life likes to vomit up at us from time to time.  My body, in response to this shit, decided that it really couldn’t be bothered to deal with that extra hassle.  So, just like that, it shut up shop and switched to Low Energy Mode.  My batteries basically went from ‘Bunny’ to ‘Dodo’ in the blink of an eye and I found myself back in my ‘can’t think, can’t speak, can’t function’ dormant state of complete and utter uselessness.

Just like that, Little Miss Hope went scuttling off into the sunset and Little Miss Dozy moved her duvet and pillow back in.  So much for that optimism, they’re a fickle, cold-hearted bunch, I have to say.

3 weeks on and there’s bugger all I can do to get myself out of this slump.  I’m living in a fog where the exhaustion brings back the pain, the pain brings back the black clouds and the blue moods make everything seem that much harder.  Right now I’m so bloody tired I could curl up, cry and sleep through to Christmas. The Christmas at the tail end of 2018.

The annoying thing is that during my brief good spell, I kept meaning to write a positive post about how the meds were working wonders.  But, as is always the case, when I’m feeling a bit better I always use that precious energy to get a load of other stuff done.  Plus, if truth be told, when I’m feeling ‘up’ the very last thing I want to think or write about is feeling down.

But hey, now I’m back to this largely horizontal state again, life’s all about the Lupus, Sjogren’s and bleeding Fibromyalgia.  So while I probably don’t have the clarity of brain to put one correctly spelt, relevant word in front another, I might as well get this blog back on track.  If nothing else, it might stop the onslaught of WordPress emails that remind me I’ve gone to ground; they repeatedly tell me to keep my followers informed.

Why you lovely people (who’ve taken the time to follow my blog) would actually want to be informed about my health related crap, I have no idea!  But thank you, sincerely, for showing support.  I was starting to wonder if there’s even a point to spilling my guts and whining all over the web in this way, but I guess if even one person can relate and nod their head in agreeance, it makes it all worthwhile.

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It’s all a bit (fleecy lined) pants

January is one of those months when nothing really happens, it’s all just a bit blah. One minute you’re cramming a too big bird into a too small oven, the next, you’re realising that February is about to happen. Once again you ask yourself: What the hell happened there?

Was January shorter this year? Did I sleep through a week and not notice? Did we ever finish off all that turkey? Creme eggs already? Really?

For me, the weather plays a rather large part in this black hole of time. So cold has it been lately that I’ve only left the house when absolutely necessary. School runs and the occasional trip to support sporting offspring fall into this category. Clearly, I braved the post-Christmas sales as well, but that’s also a ‘necessary’.

Each day in 2017 I’ve sported exactly the same ‘dressed for warmth, not style’ combo: fleecy lined yoga pants (yoga mat not required), furry lined hoodie, furry lined slippers and thick fleecy socks. When needing to leave the house, so many additional layers of fabric are required that I struggle to bend over and pull my boots on. Aforementioned sporting trips involve jeans over yoga pants, multiple thermal vests under hoodies and two additional pairs of socks inside the fleecy ones.

Do I look like a blue whale packing some extra winter blubber? Most probably. Do I really care?  Nope. Far too cold to give a shit. Have I showcased any of my ‘must make more of an effort to look stylish’ new sales purchases? Erm, no.

So about all this January blah-ness. I think it probably comes down to motivation; I know that I definitely lost mine. I suspect it might have been thrown out with the Christmas wrapping paper by mistake. It’s probably languishing at the bottom of a recycling skip right now, waiting to be pulped. Or worse still, buried in some godawful landfill with a pile of stinking nappies.

Sorry, I digress. Back to the blah.

For once, I can’t even blame it on the dodgy health. So far this year I’ve had great days, mediocre days and ‘don’t you dare even try and wake me up’ days. For the most part though (touch wood) the tablets are still doing their thing. Of course autoimmune is no friend of winter. My joints feel more inflamed in the cold. My mood dips when the sky is grey. My fatigue is ramped up by the central heating. My fingers often look like a rotting corpse.

It’s safe to say I probably won’t have much of a spring in my step until… well, until Spring. When the first daffodil is brave enough to claw it’s way out of the earth and face the world, I’ll consider doing the same.

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‘Top 10’ things that chronic fatigue ISN’T

Following on from the last blog about unwanted opinions, here’s my ‘Top 10’ list of all the things that chronic fatigue isn’t.

Feel free to print it off and wave it around in the faces of all those doubting non-believers!  Better still, why not download the PDF, print onto A3 paper and stick multiple copies around your home or place of work!

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When opinions come thick and fast

There are just so many helpful people out there in the world, all rushing to give their opinion on what chronic illnesses are or aren’t, and what they think will cure them. Opinions that are, more often than not, based on judgmental presumptions, half-baked facts and an irrelevant article they once read about an entirely unrelated medical condition.  A condition that was (according to Bella magazine) miraculously cured by dancing naked in the moonlight whilst chewing on the roots of a cactus plant.

Granted, sometimes these opinions do come from a place of caring and concern, but that doesn’t mean they sound any less patronising, insulting or annoying. Accusatory is how they often come across.  Like we’re somehow greatly exaggerating how we feel.  Or perhaps all these ailments are really just in our heads.  Or maybe there’s a glaringly obvious solution that we simply haven’t bothered to find out about for ourselves.

You haven’t got the first bloody clue.  Please remove your interfering beak from my business“.  Is what you want to yell.  But you don’t.

Who knows, perhaps it’s human nature that makes people always feel obliged to offer up an opinion or want to ‘fix’ things they don’t fully understand.  A bit like a man, I suppose, who when presented with a problem, will always try to solve it, instead of just dishing out the sympathy that’s required!

Having read countless posts on countless Facebook forums, it would appear that the majority of these uninvited and insensitive opinion givers are often those found closest to home: the spouses, parents, siblings and friends of the chronically ill. People, in other words, who you’d expect to be offering empathy, sympathy and a whole lot of understanding.

I think the trouble here lies with so many of these conditions (Lupus, Sjogren’s, fibromyalgia, CFS, chronic fatigue, chronic pain etc) being an invisible illness – and one that often involves two very different faces.  So unless the opinionated person in question has seen firsthand the fatigue or symptoms at their very worst, they can’t even begin to comprehend how life-changing and debilitating such a disease can be.

On the other hand, all these unsolicited opinions could just be down to that person being a thoughtless, self-involved, mentally draining, arrogant arsehole.  And if that’s the case, telling them to sod off out of your life is probably the simplest solution of all.

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