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.

signature ribbonSM

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’senergy-meter-sick-and-always-tired 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.

signature ribbonSM

 

 

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.

signature ribbonSM

Getting away from the world 

24 hours, three flights, two sick bags and one emergency oxygen canister later, and we have finally arrived in a little corner of paradise called Krabi.  Time for some much needed rest and recuperation.

Set beneath towering cliffs in the middle of a tropical jungle, our resort is possibly the most idyllic setting in which to escape from the real world.  So far, so perfect.


Being one who struggles to stay awake and overly active at the best of times, the multiple flights, change in time zones and a big old helping of jet lag isn’t much helping the cause.

Day one: crawl out from under the mosquito net for breakfast; scuttle back to bed for a quick nap; wake up at 6pm; swim, eat dinner and then go back to bed.  All-in-all a thoroughly exhausting and non-productive day.

Plan of attack going forward: stay awake long enough to actually leave the bungalow and experience Thailand.

Day two: wake up from a deep, coma-like sleep; leave Arctic temperature of an air conditioned room and get hit in the face with a wall of 96-degree heat; stagger to the restaurant for breakfast and eat my own body weight in eggs and papaya.  I figure one will counteract the other…

Next for the tricky bit: protecting my sun-sensitive, lupusy skin in an environment that’s not dissimilar to a tandoori oven. First up, a very liberal helping of Factor 50 P20, followed by Factor 50 on the face and a bit more Factor 50 for good measure.  Plus, of course, the obligatory hat and big glasses.

So here I now lay, oiled up like a seagull in a shipping disaster, sweating like a beast and hiding under the shade of umbrella by the pool.

So far, so sun safe.

signature ribbonSM

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

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.Laying down

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.

signature ribbonSM

Current status (say no more)

sickandalwaystired.comhandsign

And just one more thing…

I promise this is not a doctor bashing blog (I know the majority do great things every day), but I’m feeling ever so slightly grumpy after recent events.

So here’s the thing.  As a patient, I just wish that sometimes doctors would be a little more… what’s the word I’m looking for… empathetic.

I can count on one hand the number of doctors I’ve seen who seem to care.   Genuinely care I mean, not just asking what they can do to help.  Surely ‘caring’ should be a prerequisite for getting accepted to med school, and attending an Empathy class should be compulsory.  There’s bound to be a half an hour slot right between Dissection 101 and the What’s the Longest You Can Keep Your Patient Waiting seminar.  It seems to me that a number of other important classes have already been cut from the training curriculum; The Importance of A Good Bed Side Manner and Explain, Don’t Patronise are two that immediately spring to mind.

Hey, if ’empathy’ is too big an ask, I’d be happy to scale back all my expectations and just settle with some good old-fashioned listening.  This very basic skill only requires the ownership of two working ears, so no additional NHS funding will be necessary.

Yes, yes, I do of course understand that they’re a very busy bunch up at my local rheumatology department, and that it’s no doubt overrun with 1000’s of other people in exactly the same boat as me – all gnashing their teeth in exasperation and wanting a little more support.  I am also well aware that there’s bugger all that can be done to cure Lupus, and most of the treatments are always going to be hit and miss.  It’s all about the ‘management’.

But here’s the thing: (I might as well speak on behalf of all the 1000’s of fed up, teeth gnashers out there) we would like to point out that we’re more than just an NHS hospital number.  We’re also more than a set of blood results or a bi-annual appointment that needs to be checked off the consultants to-do list.  Some of us are getting mighty fed up with being fobbed off, patronised, pacified and then packed off till the next time, with absolutely no sign of any improvements or progress whatsoever.

Ok, grumpy rant over for the day.  I’ll now hobble off my soap box and go take my meds like the good little patient that I am.

signature ribbonSM