depression

Why Chronic Illness leads to Loneliness

~ Rachel ~ 5 Comments

I think it’s true to say that all chronic illnesses have one symptom in common: Loneliness.

For me, it can be one of the worst symptoms of the lot, often battling it out with Pain and Fatigue to ‘win’ the day and get one over on me.  For healthy, socially active and ‘other side of the bars’ people, it must seem odd that a state of mind could ever pull top trumps on a physical pain, but in many ways it does.

To understand how it’s probably best to dissect each symptom: surgical gloves at the ready!

Let’s start with Chronic Pain.  In whatever wonderful form it takes, there’s no disputing that this one is unquestionably an evil bastard – unrelenting and utterly vindictive.  It takes no prisoners and gives no time off for good behaviour.  I won’t woffle on about just how bad Pain can be, as I’ve already covered that here.  And here.

But Pain (in its simplest, non-chronic form) is a widely known entity.  There isn’t a person alive today who hasn’t felt its wrath, from a grazed knee and pesky splinter to a twisted limb and broken bone.  And let’s not forget childbirth – the mother of them all!

This shared understanding of Pain makes it socially acceptable: it can be openly discussed and easily emphasised with.  No GP will ever panic if you tell them about Pain, they’ll just reach for the prescription pad (or keyboard, these days) and bombard you with drugs.  In the case of Chronic Pain (or mine at least), most of these pain ‘killers’ barely scratch the surface; they’re as effective as a hit man with a cast iron moral compass.  But at least for Pain there’s plenty of meds and it always makes me feel slightly proactive to pop a pill.

Then there’s Chronic Fatigue, an equal to Pain in every way.  Real, wall-hitting, concrete-encasing, treacle-plodding Fatigue is the undisputed Queen of All Bitches.  It drains the life out of life and the fun out of everything.  But I’ve already covered my hatred of Fatigue here.  And here.  And here’s my Top 10 Things That Fatigue Isn’t list.

Unlike Pain, however, Chronic Fatigue has to be experienced to be truly understood.  It is not the same as tiredness (that everyday, run-of-the-mill stuff that everyone feels) and nothing else compares.  In my opinion, Fatigue is a powerful force for evil: The Dark Side, Dementors, Death Eaters and The Eye of Sauron all rolled into one.  It’s impossibly hard to fathom for those with bounce and vigour and this makes empathy rather thin on the ground.  There is some, however, as  Fatigue can make you look like the walking dead and it’s obvious to all that you’re really not feeling great.

Sadly there are no pills for Chronic Fatigue, but it can (according to the ‘medically’ trained) be aided by rest.  And taking it easy.  And learning to pace yourself.  Please just excuse me here while I roll my eyes.  What all this Fatigue and resting and spending time on your own does lead to is… the actual point of this blog.

Loneliness: an entirely different type of beast and the Satan of Symptoms.

For me, Loneliness is something that sweeps in and out of my life, like an all-consuming surge of water in a particularly menacing storm.  Whether it comes from nowhere or accompanies a flare, it always takes me completely unaware.

It creeps up on me whilst I’m focussing on Pain.  It slinks into the room while I battle Fatigue, filling up every last bit of space until I feel I can’t breathe.  It sits beside me when I’m resting, invading my thoughts and slowly drip feeding negativity into my brain.  It’s as if the worst of my insecurities and crippling fears are joining forces, playing games with an already fragile mind.

It’s hardly a surprise that Loneliness stands shoulder to shoulder with Anxiety and Depression.  They’re like a small coven of witches all hell-bent on dragging me down.

Yes, Loneliness is a bleak and terrible place to find yourself: dark and isolated and a million miles from everything that feels familiar.  It has the ability to transform any environment, no matter how safe and secure and make it feel empty and odd.  It’s the unsettling feeling that something is ever so slightly out of place, but you just can’t put your finger on what or why.

prison-sick-and-always-tired

Loneliness for me is like looking out at the world from behind a set of bars.  It’s seeing life carrying on around me, life carrying on without me.  And however much love may surround me it doesn’t change the feeling that I am completely alone.

In part that’s because it’s true.  Loneliness is something that I often feel and think about but very rarely discuss with anyone.  Partly because I don’t want to cause offence to those who are always by my side and partly because I don’t think anyone else would really care.  Maybe I’m wrong, but I don’t think so.

The worse part of Loneliness is feeling that it’s so damned obvious that everyone around me should be able to spot it.  I really, really want someone to notice how I feel, but of course, it’s as invisible as all the other symptoms so no one ever will.

Even my rheumatologist doesn’t.  He’s certainly never asked me whether I feel utterly alone with the collection of diseases it’s his job to treat; he couldn’t be less interested in my state of mind.  All he wants is for me to take my meds, never query his opinion and turn up once or twice a year to be ticked off his ‘to see’ list.  My new GP also steers clear of Loneliness.  Maybe that’s because she can’t afford to open the floodgates and release the tidal wave of tears that’ll inevitably come.  She knows it’ll be nigh on impossible to replug that dam in a 10-minute allocated NHS time slot.

So maybe my worst symptoms come down to how much understanding and empathy they evoke.  This puts Loneliness on the winning podium as how can there be empathy for something when no one even knows it exists?

signature ribbonSM

Alive. Kicking. Almost.

~ 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.

signature ribbon

Highs and Lows of Lupus

~ Rachel ~ 8 Comments

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.

signature ribbon

Oh, give me strength

~ Rachel ~ Leave a comment

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.

signature ribbonSM

An unwelcome visitor came to stay

~ Rachel ~ Leave a comment

sickandalwaystired.comcloudFor 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.

signature ribbonSM

Life with Lupus? It’s all a bit sh*t

~ Rachel ~ 2 Comments

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.

signature ribbonSM

I’m not lazy, I have Lupus

~ Rachel ~ 3 Comments

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!

signature ribbonSM