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 dizzy-sick-and-always-tiredlike 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.

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Want to know how ‘Chronic Fatigue’ feels?

How best to describe what chronic fatigue feels like?  Perhaps the most effective way would be to compare it to some more relatable ‘everyday’ scenarios.

So here goes:

Imagine you’re midway through an atrocious bout of flu.  No, not the sneeze and sniffle sort that men call flu, I’m talking the full works: body aches, pounding head, cold sweats, chills, and the raging fever sort.

Now, with your energy levels already running on 50%, you head to the airport and embark upon an epic 24-hour flight.  The seat isn’t big enough to swing a hamster in and the food is inedible at best.  An irritating child kicks you in the small of your back for hours on end; your body now feels even more bruised, battered and achy than before.

Sitting in the dark and surrounded by 100’s of snoring strangers, you feel isolated and totally alone.  You give up trying to sleep and watch film after film to pass the time, but this makes your eyeballs sore and sandpaper dry.  You’re desperately thirsty, but as you’re pinned in by the window you can’t risk a full bladder.  Five films and two rock-hard bread rolls in, you realise just how far you still have to travel and you begin to feel a bit beside yourself.

By the time you arrive at your destination you look, feel and smell like death.  As you exit the plane, you’re hit in the face by a 50-degree heat and a 90-degree humidity.  You’re feeling weak, disoriented and so dizzy from exhaustion you can hardly stand.  Your brain is completed shrouded in fog and you can barely remember your own name.

By now you’re running on 30%, tops.

Fast forward to that night and your body is moving in slow motion. Your use of speech is limited to grunts and your concentration levels  are shot to shit.  You’re convinced you’re battling the worst diagnosed case of jet lag ever.  But still, it’s holiday time, so you decide to hit the town.  Copious amounts of alcohol and some rather suspect street food later, you collapse into bed.

The next morning, before you even struggle to prise open your eyelids, you realise something has gone terribly wrong with your body.  Panic starts to set in and you feel scared and vulnerable.

Your battered limbs feel as if they’ve been encased in cement and bolted to the bed.  Raising your head from the pillow is a step too far.  It’s as much as you can do to twitch one finger.  You soon come to the conclusion you’re suffering from the worst diagnosed hangover ever.

Despite having slept all night, you’re now running on 20%.

Eventually, your body starts responding to basic requests and you heave yourself into a sitting position; it takes another good few minutes of concentration before you can stand.  You decide it’s probably safer to sit down on the floor while taking a shower.  Hot water helps with the aching bones, but washing your hair is out of the question, as your arms aren’t strong enough to lift above waist height.  Ditto for teeth, so you resort to resting your elbows on the sink while you brush.

By the time you’re clean, you’re running on 10%, max.

Heading out for a day of sightseeing, you attempt to climb (what appears to be) the steepest hill you’ve ever seen.  Everyone else seems to be overtaking you at speed, but putting one foot in front of the other is proving something of a challenge.  It feels as if you’re wading through treacle; every step takes concentration and requires way more energy than you have.  You hit the wall.chronic-fatigue-sick-and-always-tired

 

 

 

 

 

By the time you go to bed that night, every limb is on fire and you’re so knackered you can neither think nor speak.  Another shower is certainly out of the question.  Nausea is coming in waves and you think you might be sick.  You pray it’s not that dodgy street food from the night before.

Climbing into bed you expect to fall into a deep and wonderful sleep – but you don’t.  Despite being delirious with exhaustion you lay awake for hours on end.  You need the loo at least 6 times and each time it’s a mission to get out of bed.  It’s now something stupid o’clock in the morning and you’re wondering how it’s even possible to experience extreme fatigue and insomnia at exactly the same time.

energy-meter-sick-and-always-tiredAt most, you’re now scrapping the barrel on 5%.

The next morning you wake up, peel open your eyelids and realise you still feel exactly the same as you did the night before.  The thought of facing another day like yesterday is just too much.  You could cry.

A full night’s sleep and you’re only back up to a measly 10%.

That day, you lay on the bed and do absolutely nothing.  You can’t bring yourself to read, watch TV or even talk.  By night-time you’re back down to 5%. You don’t sleep well and the next day you wake up feeling exactly the same sodding way.  And so it goes on.

Occasionally, after prolonged periods of rest your body charges back up to 50% – you feel pretty bloody fantastic.  But then you go and ruin it all by trying to do too much.  A slap on the hand for being overly ambitious and back down to 5% you go.

Weeks pass.  Months pass.  Years pass.  You’re forced to accept that this is now the new ‘normal’.

You hate your illness. You hate your body.  You hate what you can no longer do. Your doctors tell you there is no cure for chronic fatigue, just ‘rest’.

You could cry.  You often do.

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P.S. The description above may sound highly unrealistic and incredibly melodramatic, but take away the unlikely chain of events, and the rest (in my experience) is the bloody depressing reality of living with chronic fatigue.

 

 

What is chronic pain?

I’ve already covered what chronic pain is, so now to talk about what chronic pain feels like.  Of course, everyone has very different pain issues to deal with, but chances are the overall experience is equally life-changing and depressingly miserable for all involved.

When it comes to that ‘Ouch to the Off The Chart’ pain spectrum I was talking about, for me, personally, it’s often at the upper end of the chart.

When I just had the Lupus to contend with the pain was easier to control, but now Fibromyalgia has joined the mix, my pain is now almost constantly ‘on the move’.  A bit like the London Underground, it runs up and down each of my limbs, careering from fingertips to toes and back again.  It rarely stays still for very long, just a brief pit stop in each area (giving it time to throb, burn, and ache) and then it’s changing direction and racing off to the next destination.  Migratory pain, the doctors call it; makes me think of a herd of wildebeest stampeding across the dusty African plains.

mallet-sick-and-always-tired-comAs well as being nippy on its feet, this pain of mine is also rather brutal.  It often feels as though someone has taken a mallet to me, and is smashing, shattering and crushing every bone along the way.

It’s not that dissimilar to when you whack your funny bone, and then have to stand completely still while the pain reverberates through your body.

As if feeling like a clubbed baby seal wasn’t stressful enough, there’s also a rather disturbing sensation of electricity and ice-cold water flowing through my veins.  Clearly, that’s slightly freaky and unnerving, to say the least.  We were all taught in science lessons that electricity and water really aren’t the best of friends.  I’m not 100% sure what causes this arctic electric shock of mine.  Something to do with the nerves, I think.

Some days the sheer intensity of all this combined pain is so severe it makes me feel nauseous.  Just like morning sickness, it comes in waves out of the blue and makes me gag.  The pain also makes me weep and wail.  I’ve sat in the shower and sobbed, laid in bed and howled, and screamed while driving my car.  Music was blaring and the windows were up at the time, so luckily no other road users were harmed or alarmed.

This chronic pain of mine has been going on for about eight years now – with the last six being the worst.  Initially, it resided in my hips and legs; my bones would burn and ache every single day.  Walking was difficult as my hips would seize up, even when shuffling along the road at snail’s pace.  A particular low point for me was being overtaken by an 80 something-year-old man, who was out taking a leisurely Sunday afternoon stroll.  With his cane.

There were days my joints hurt so much I couldn’t lift each leg to climb the stairs.  I would resort to crawling up, step by step on my hands and knees. Sleeping also proved tricky, as laying on either hip was proving agony.  I soon learnt to snooze on my back and keep a large stash of painkillers by the bed. Cortisone injections into each hip proved the only treatment that made a difference, but these were given out sparingly by the doctor and they only lasted 3 months tops.

Then a year or so ago I had a slight lull in the pain. Oh, the joys, what a difference that made – for about a week.  Then, fresh from its mini-break, the pain returned and spread to my arms and hands too.  Imagine my delight. Walking like an octogenarian is one thing, not being able to lift, pull or open a door is something entirely different.

It was at this stage, and after much moaning and groaning to my rheumatologist, that he agreed to try me on Aazathioprine.  After the first couple of weeks of pills, the joint pain almost vanished straight away.  Result! A few months when I was (wrongly) told to stop taking them, the pain came straight back.  And with a vengeance, I might add.  When I started back on Azathioprine for the second time it wasn’t quite so quick to take effect.  I panicked that it wasn’t going to work.  After a brief reminder of how good life without severe pain really was, I didn’t want to settle for anything less.

12 weeks on and, for the most part, the drugs seems to be doing their thing. As long as, that is, I don’t ‘overdo it’ or forget to get enough rest.

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Jet lag & Chronic Fatigue: a crippling combo

The downside of going on holiday is always the coming back and re-adjusting to the time zone you left behind.  Little Miss Jet lag is a bitch to deal with at the best of times; tag team her up with Little Miss Perpetually Exhausted and this body of mine has hit a wall with such force that it’s unlikely to bounce back anytime soon.

Feeling dog tired is hardly an unfamiliar sensation of course, but after such a lovely month away, doped up on ‘holiday adrenaline’ and achieving all kinds of impressive feats, I’d kind of forgotten how terrible ‘lupus tired’ is.  I had been hoping the azathioprine would have kicked in behind the scenes and be working it’s magic by now; sadly I don’t think that’s the case.

Since staggering through Heathrow early last Friday morning, my body clock has been all over the shop.  I’ve had trouble staying awake and trouble staying asleep. Each morning I’ve been waking up well before the birds put in an appearance.  Not waking up and feeling productive, mind you, just waking up and laying there feeling absolutely shattered.  Consequently by late afternoon, I’m forcibly peeling up my eyelids to try to keep them open.

Rather than starting to perk up as I settle back into England O’Clock, today – my fourth day home – was the weariest so far.  I was so far beyond knackered that by the time I’d eaten my breakfast, I was in need of a nap.  The day didn’t really progress much from there.  Aside from sewing on two name tabs and labelling some school socks with a pen, all I managed to do for the rest of it was lay on the sofa and binge watch a month’s worth of Sky Plus.

It wasn’t until I wandered into the kitchen just after 8pm that I looked down and realised I’d actually forgotten to get washed and dressed this morning.  Clearly, my family is so used to living with a sloth that no one saw fit to even question my lack of daytime attire.

Here’s hoping I manage to function in a more vertical position tomorrow.

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New Challenges & Painful Consequences

When visiting Thailand, there’s no time on the agenda to be aching, sore or ill, so during the last couple of weeks, I have thrown myself into life with great gusto.  As those motivating, life-affirming signs always tell you to do, I lived every day to the full;  as it were my last, in fact, and to hell with the consequences.

IMG_0218I took a longtail boat out in the pouring rain and explored the islands off the Krabi coastline.  I discovered Phra Nang Cave – a shrine of wooden penises!  I went snorkeling off of Chicken Island, though sadly there were more Chinese tourists flailing around in the water than pretty fishes in the sea.

me and elephant

I leapt from the top of a tree and into the unknown, soaring above the leafy canopy of a jungle, a stomach-churning 100 feet above the rainforest floor.  I said a silent prayer and abseiled down the trunk of an incredibly tall tree.

I fed bucket loads of bananas and sugar cane to some rescued elephants.  I stood waist-deep in murky water, washing and scrubbing their tough, bristly skin. I fed carrots to giraffes and stroked their noses; one sneezed on me. Very pleasant!

I experienced the lax and rather unofficial/unpredictable rules of the local road, clinging onto the back of a speeding moped.  I visited bustling night markets and had the dead skin on my feet nibbled off by 100’s of fish.  I had my knotted muscles and painful joints pummelled to within an inch of my life, and my skin scrubbed down, oiled up and kneaded to that point where pleasure starts to merge into a rather necessary pain.  I ate a lot of Thai Green Curry.

And then for the pièce de résistance in this bucket list of physical challenges: I scaled a waterfall.  Yes, that’s right, me, a person who often has difficulty making it up a flight of carpeted stairs.  I clambered up and down some very steep rocks into oncoming cascading water; barefoot and by hand, no less.

Sadly this impressive feat has IMG_1253nothing to do with a miraculous cure or some newly acquired superpowers.  Rather it was down to the limestone mineral deposit on the rocks at Sticky Waterfalls (officially known as Buatong or Bua Thong waterfalls) that turns even the most uncoordinated person with zero balance and climbing skills (that would be me) into a sure-footed, Spiderman-like superhero.

I’m now half way through the trip and it’s time to take regroup and recover; time to deal with those consequences I mentioned at the start.  I’m used to the drill and it’s nothing I haven’t experienced 100 times before.  But oh boy, why do those consequences have to be such a brutal wake-up call.

I’m into the fifth day of ‘post overdoing it’ agony: bone-jarring, head to toe pain, hypersensitive skin, inflammation in single every nook and cranny and the life-sapping lethargy that makes every set of stairs seem like a mission too far.

Remind me again how the hell I managed to scale a waterfall?!

Of course, I know my body will settle back down in time and forgive me for taking the proverbial.  It always does, eventually.  I suspect, however, it might take a little longer than normal to bounce back this time.  In hindsight, perhaps the Spiderman antics might have been taking things a step too far.

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Current status (say no more)

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An unwelcome visitor came to stay

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.

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