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They shall grow not old, as we that are left grow old;
Age shall not weary them, nor the years condemn.
At the going down of the sun and in the morning
We will remember them.
SLE
Pain: a very curious companion
Chronic Pain is something of a curious companion. A very constant, curious companion.
When waking in the morning it’s already there. Bright-eyed, bushy-tailed and smirking in delight. Always perched at the end of your bed, double espresso in hand and impatiently tapping a foot. Just waiting to crack on and eager to ruin your day.
From eyes open to eyes shut, Pain makes everything you do a mission and the simplest of things a chore. Stairs turn into mountains and every walk feels like a trek. It’s there when you shower, cook, eat, drive, shop and rest. It pesters you when you’re working and turns your brain to fog. It mocks all attempts at exercise. It punishes you for weeks.
Like a lazy toddler who refuses to be put down, Pain hangs off necks causing knots to form and tendons to shriek. It clings to backs until muscles pull and ache. It grips hands in a vice, crushing fingers until colour drains and cramp sets in. It bounces off hips and sits astride shoulders, gripping temples and reigning blows down upon throbbing heads. It’s positively relentless. And an utter pain in the arse.
At the end of the day when you eventually collapse into bed, Pain is still there. Snuggled in like an unwanted spoon, weighing you down and wrapping around every painful limb. And then for its grand finale – the biggest insult of all.
By the time your eyelids are hanging down past your cheeks, blissful sleep doesn’t even come to save you. No sirree. Pain snores like a freight train, kicks the small of your back and hogs the entire duvet. So now, you’re utterly exhausted and completely wide awake, all at the same time. Painsomnia they call it. Possibly the worst hours of the entire 24-hour day. And that really is saying something.
Week after week, year after year Pain hangs around like a bad smell, just sat there waiting every morning. You can try drowning it in lavender scented bath water or drugging it with pills. You can count your breaths and be mindful or ‘downward dog’ it to death, but nothing really seems to work. No matter what you tell it or how loud you scream, rant and swear, it just smirks a little more and ramps it up another gear. To give Pain its dues, it certainly has commendable staying power and a very thick skin.
So yes, Chronic Pain is quite possibly the most curious, constant and loyal companion of them all. Just like cellulite or a very needy dog, come rain or shine, no matter what you do, it’s always there and it refuses to ever back off, take a break or budge.
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.
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.
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.
‘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!
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.
Spinning right out of control
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.
Day 274: hibernation here we come
Blimey, I’ve just counted and it’s 139 days since the last ‘Azathioprine update’. That’s 4 blood tests, 4 lots of results, some random appointments and a whole lot of readjusting since I went back to ‘Square One’ in July.
On the whole, it hasn’t been too terrible and there’s still no green, scaling skin, newly grown limbs or unusual superpowers to report. The worst of the joint pain is still being held at bay (hurrah) and I’m definitely a hell of a lot more mobile than I was this time last year, or the one before that, or the one before that…
Fatigue-wise, it’s all much of a muchness, but that was always going to be the case. There is NO drug, quick fix or cure for chronic slothitus fatigue, more’s
the pity. What I have learnt, or rather, what I keep learning, but never seem remember, is this: I can manage day-to-day as long as I do absolutely nothing.
Ok, that sounds a bit bleak, I admit. What I mean is, as long as I don’t try to push myself, be overly ambitious, think I’m more capable than I am or do anything resembling reckless, I can, for the most part, get stuff done. That said, I still have very regular relapses when energy levels are at zero, zip, zilch and nada.
The approaching winter is, however, definitely throwing up a few curve balls. During the last 6 weeks or so I’ve bounced from one thing to another, never quite having the chance to come up for air or recover in between. Is this down to the Azathioprine? I’m not entirely sure.
Having put the infection and headache behind me, I promptly came down with the flu. Not that I actually realised it was the flu, until I was already halfway through the whole aches, pains, coughing and wretched snivelling. That, in itself, just goes to show how many horrible symptoms someone with Lupus will pass off as ‘normal’ before they even entertain the idea that something else might actually be wrong.
Just for the record, I did line up with all the OAPs in the village for my flu jab this year, but clearly, that wasn’t worth the nasty pain in the arm it gave me. Either the head honcho at the Influenza Immunisation Programme picked the wrong strain to target this year or my body plans on surrendering to every single virus comes along.
With a cough still lingering a couple of weeks later, I’m now wondering just how well my now suppressed immune system is going to fare this winter. I’m practically housebound as it is, and when I do go out, the cold weather shocks my body into one sort of head-to-toe meltdown after another.
So I choose to stay inside, dress in fleece onesies and whack up the thermostat. A perfect solution, you might think, except for the fact the central heating seems to bring on a whole host of other problems: even drier eyes, terrible headaches, sniffs and sneezes, additional tiredness, wooziness and increased brain fog. But turn off the heating and the Raynaud’s and general miserableness kicks in.
I think that’s what you call a lose-lose situation.
So, what pray is the answer? Rethink my choice of drugs? Completely avoid civilisation? Wear a full germ resistant biohazard suit? Or perhaps I should just do like a hedgehog, disappear under a pile of leaves and hibernate till Spring?
Either way, I am slightly concerned that by the time the trees have regrown their leaves in 2017 I’m going to be translucent in shade, socially inept and adding muscular dystrophy to the list of woes.
Oh, give me strength
Forgive me while I scream.
Back in August, I clocked in at the hospital for a check up with my Lupus nurse. It was one of those ‘we understand, we care’ sort of appointments. I told her how let down I felt by those overseeing my healthcare. I mentioned I was concerned about my periodic bouts of doom and gloom. I said I was worried the Azathioprine might not be doing its job.
Fear not, she reassured me, I’ll book you an appointment for 3 months time, that way I can double-check you’re ok and see if the meds are on track. Offer accepted and appreciated.
Then yesterday I received two letters in the mail. The first informed me that my appointment in November has now been cancelled; they hoped this wouldn’t cause me too much of an inconvenience. The second letter said my appointment had now been re-booked. For 8th August 2017.
2000 and bleeding 17. I admit I did a double-take on the year. Then I swore.
How reassuring that one minute they deem it necessary to check I’m not wallowing in depression or taking ineffective meds, then the next I’m put on hold for another 10 months.
I’d like to say I was shocked to the core, but I’m not.
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