Alive. Kicking. Almost.

June 5, 2018October 6, 2018 ~ Rachel ~ Leave a comment

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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What is the point?

May 24, 2017May 25, 2017 ~ Rachel ~ 7 Comments

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?

When opinions come thick and fast

November 30, 2016November 30, 2016 ~ Rachel ~ 1 Comment

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

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.

Day 274: hibernation here we come

November 21, 2016 ~ Rachel ~ 1 Comment

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.

The perfect Lupus video for kids

September 29, 2016 ~ Rachel ~ Leave a comment

It can be difficult to explain to young children what Lupus is all about. Too much information and they’ll panic; too little and they’ll struggle to understand why you’re fast asleep and their dinner hasn’t even left the fridge.

I thought this short clip below provided the perfect balance. Thank you Lupus UK for yet another brilliant production!

Day 135: hey ho, back to Square One we go

July 5, 2016September 29, 2016 ~ Rachel ~ Leave a comment

The last few weeks have been quite an unpleasant adventure; a throwback to the beginning of the year. From the moment I retrieved my first Azathioprine pill from the ‘useless medication’ basket on top of the fridge, I felt rank. I’m talking room-spinning, head-pounding, limb-aching, swallow down the vomit sort of rank. A bit like morning sickness come to think of it, with a touch of flu thrown in.

I had been hoping that it wouldn’t be so bad the second time around. Clearly, I was wrong. If anything, those lovely little chemicals seemed to get to work even quicker than before. By the first night, I was woozy and spaced out, by the second day my head felt freakishly large and I couldn’t handle bright lights or noise. By the third day I had ground to a screeching halt; I was as good as useless. I spent the entire day on the sofa, gazing at the cracks on the ceiling and feeling bleak.

Like before, it felt as though I had ice water running through my veins and a pair of car battery chargers clamped to my fingers, releasing wave upon wave of electric shocks through my limbs. My bones felt crushed and my chest felt constricted.

When I did make it off the sofa, I didn’t so much walk as drag my carcass around the house. Going upstairs was a painful exercise, both painfully slow to watch and painfully sore to do. Much like a centenarian climbing a very steep hill, I progressed one very tentative step at a time, pulling myself up by the handrail. It was a pitiful and tragic experience.

By the end of the first week back on the tablets I was gradually starting to adjust. Still absolutely shattered of course (is there any other way to be?) but no longer knocking on death’s door. By the end of the second week I was turning a corner.One more restful weekend and I reckon I’d have been feeling pretty sprightly by now, as I headed into the third week.

But then I went shopping. Or should I say, then I went on an 8-hour shopping extravaganza. It was great to be back out of the house and acting ‘normal’, but what was I thinking. Fun it may well have been; sensible or overly restful it was certainly not.

Thus the third week dawned and lo and behold, I felt like I’d been hit with a sack load of wet cement. Back to Square One, I shuffled, feeling sheepish, silly and incredibly sore. Self-sabotaging mission: complete.

Rewind to Day 96.

An unwelcome visitor came to stay

June 9, 2016September 29, 2016 ~ Rachel ~ Leave a comment

For the last week, I have been living under a cloud. A great big, heavy cloud that has hovered above my head and pressed down on me like tonne of bricks.

I’m not sure why this dark cloud descended on me one night, nor what started it or where it even came from. How this unwelcome visitor snuck into the house and got past the dog, I have no clue; he normally barks at everything.

At the beginning of last week, I was feeling quite bright; the last of the azathioprine was loitering in my blood stream and I had some spare energy still knocking around. So to make the most of this ‘get up and go’, I did stuff. I did a lot of stuff. I did way too much stuff. And then I paid the price.

By Thursday I was flagging, by Friday it was all too late. Engines off, power down, body into battery saving sleep mode. My ‘get up and go’ had got up and gone. Bugger it, why me and it’s not fair – I hate Lupus.

That day and the three that followed could most definitely be classed as inside the house days. I didn’t really move more than I had to, just a slow scuffy shuffle from room to room. I couldn’t be bothered to do anything, think anything or feel anything. I didn’t want to read, write, rest, eat or brush my hair. Worse still, I didn’t want to talk, laugh or even smile. I’d completely lost my happy.

Sure I’ve had slumps before, but none like this. My mood was as flat as a Dover sole. But why? Everything in my life (health aside) was great, yet I felt utterly miserable, desolate even. I also felt strangely detached from everything and everyone around me, and I didn’t know how to reconnect. Worse than that, I couldn’t summon up the energy to even try to reconnect.

Thank God for my husband, the one who knows me so well. He watched, waited and persevered. He tried every trick in the book to chip away and dig me out from my pit of misery and gloom. It took a painstaking line of questioning, several pick axes, a crowbar and a box of tissues. Oh, and a box of my favourite Lindor chocolates.

Two days on and I’m still not sure what that was all about. Perhaps it all stemmed from my frustration and despondency over the great medication fiasco. Or perhaps my brain was short wiring from months and months of erratic sleep. Or maybe my body was simply objecting to going cold turkey after months on the drugs.

Whatever the reason, I’m hoping that wretched cloud stays well away and doesn’t invade my home or head space again.

The two faces of Lupus

June 1, 2016September 29, 2016 ~ Rachel ~ 6 Comments

These days there are definitely two versions of me: the ‘inside the front door’ me and the ‘facing the world’ me. Same species, same person, same DNA, but oh my, you wouldn’t believe how different I can look.

My ‘inside look’ is quite a sight to behold: yellow/grey/green tinged skin; hooded, burning panda eyes; well past needing a wash hair, dragged up into a top-knot; a chicken legged hobble when I walk. And then there’s the uniform of the chronically ill: the baggy t-shirt, hoodie, all-day pajamas, tracksuit bottoms, leggings combo. Plus fluffy socks and slippers, obviously. Wearing a bra very much comes down to the mood on the day and how much extra effort will be required.

Very few people are unlucky enough to be subjected to this terrifying, unfiltered version of me. My husband and kids take the brunt of it, and they’re so used to it now that, god love ’em, they don’t even flinch. The postman is also subjected, but I do tend to hide behind the dog when opening the door.

On the odd occasion, this ‘inside look’ has actually made it past the end of the drive, but I do try to limit this to the ‘beyond too tired to give a shit’ days. Normally these outings involve the school run when I scuttle into the car wearing completely inappropriate night-time clothing and large dark glasses. My poor daughter only has to spot me from across the car park, slinking down behind the wheel, to know what sort of day it’s been.

These momentary blips aside, when I head out with a chance of meeting people I will always make an effort to spruce up. If for no other reason than when you look like death, people have to pretend they haven’t noticed, and it all becomes a bit awkward.

My ‘outside the house’ look is a throwback to the pre-Lupus days. Preparation for this is like an episode of DIY SOS, sponsored by Batiste dry shampoo and the entire Bare Minerals range. First up is the need to change into items of clothing that aren’t shaped like a bin bag and made entirely out of misshapen cotton, lycra or fleece.

Then there’s the makeup. Thank god for the makeup. It can take a skin tone from exhausted, jaundice chic to healthy, sun-kissed glow in a matter of minutes. The trick, I have learnt, is not taking the transformation too far. Like I did a month or so ago when my husband felt the need to point out I was looking a little too ‘just back from a holiday’ for the middle of an English winter. Hair straighteners are a must, obviously. Finally, remove slippers, add shoes and ‘ta daaaaaa’. From half dead to healthy looking in a jiffy.

But here’s the bugger. The moment you make an effort to look like a healthier version of yourself, people think you’re cured. Or worse still, they think you were never really that sick in the first place.

“You’re looking great, are you feeling better then?” they ask. Now there’s a tricky one to answer. Your illness is not their problem and of course they mean well, but…

“No, definitely still sick, just caked in makeup, rattling with pills and forcing a smile,” would be the honest reply. But who wants to hear that, it’s a guaranteed conservation killer.

I’ve found it’s best to just keep it simple and lie. “I’m fine.” usually does the trick.

The one who knows me so well

May 31, 2016September 29, 2016 ~ Rachel ~ Leave a comment

Husband: You’re looking tired.
Me: I’m fine.
Husband: I said you were on the computer for too long yesterday.
Me: But I wasn’t.
Husband: Hmmmmm. Why don’t you go have a sleep?
Me: But I’ve got things to do.
Husband: You’re falling asleep against the door frame. Go sleep.
Me: ………………..
Husband: Open your eyes, walk upstairs, shut the curtains, get into bed and SLEEP.
Me: Ok, ok.
Husband: That’s STRAIGHT upstairs. Don’t look for things to do. Don’t go in your study. Don’t open your laptop. Just go SLEEP.
Me (5 minutes later): Zzzzzzzzzzzzzzzzz
Husband (3 hours later): You slept then? I said you were tired.