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

 

 

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.

signature ribbonSM

Dr. Pitbull takes charge

Recently something I never thought possible happened: I stumbled upon the very best GP in the world.  Who knew such a doctor even existed?  I’d certainly given up all hope of hunting down such a rare and mystical beast.  Up until this point, I’d have probably given better odds to coming down one morning and finding a unicorn eating breakfast at my kitchen table.

It was a friendly, blood-taking nurse who originally pointed me in his direction.  I’d been having a moan about the less than impressive medical care (namely the great Azathioprine fiasco) I’d experienced recently, saying I felt completely let down.

I know just the doctor for you,” this nurse told me.  “You’ll like this one, I promise.  He really cares and he’ll definitely fight your corner; he’s like a pit bull.

doctor-pitbull-sick-and-always-tired

It all sounded too good to be true, I thought, but worth I punt, so I made an appointment to see him. A month later (yes, it can sometimes take that long to get an appointment) I rocked up to the surgery.

Well, blow me down with a feather if that nurse wasn’t right.

He didn’t try to rush me out of my seat or make me feel like an inconvenient hypochondriac.  He asked questions; he listened; he genuinely cared. And then, just when I thought he couldn’t have got any better, he said something that I’ve often thought but would have never dared say out loud, and certainly not to a doctor.

Lupus is a really terrible thing to have,” he agreed.  “If it were cancer, then everyone would know you were sick; they’d make allowances and care a little more.  But I image when it’s a disease like this that no one can see, it must be very frustrating to have it ignored or not taken seriously.”

Well, didn’t Dr. Pitbull hit that one square on the head.  It definitely goes down as the most empathetic thing a doctor has ever uttered in my presence.  And then it got better still.

You don’t have to settle for inadequate treatment, you know,” he continued. “You do have other options“.  This was news to me.  “Would you like me to refer you to the Lupus Unit at Guy’s Hospital in London? ” he asked.

Can you even do that? ” I said, “No other doctor has ever mentioned the place, let alone offered to send me there.

Yes, of course I can, ” Dr. Pitbull said.

This all happened a month or so ago, and, if I’m honest, I’d filed our conversation to the back of my mind, along with all the other pipe dreams that are unlikely to ever happen.  You know the ones:  full health recovery, Euro lottery win, shifting the muffin top – that sort of thing.
text-sick-and-always-tired-copy

And then, out of the blue, an appointment alert popped up on my phone.  Dear god, he’s only gone and done it.  On 10th November I’m getting my foot through the door of the largest Lupus unit in Europe – a place filled with doctors who treat nothing but Lupus every single day.

As if that wasn’t enough of a reason to worship at the feet of my new, wonder GP, in the months since I transferred over to him, he’s also proved to be everything the nurse prophesied and more.  As promised, he emails me the minute my bloods come in to tell me the results and check I’m OK.  He then replies within minutes of my reply, regardless of whether it’s his day off or rather too late at night.

Yesterday, (a Saturday, no less) he took doctor care to a whole new level.  When replying to his email, I said I’d felt terrible all week and couldn’t sleep.  Straight away he came back and asked if I’d like to see him next week.  That would be great, I replied, but I’ll never get an appointment with you.

Low and behold, a few minutes later, another appointment alert for this Thursday popped up on my phone: he’d only gone and sorted it out himself.

Give the man an early sainthood.  He’s single-handedly proved that some doctors are worth their weight in diamonds.  And that, with the right people in place, there’s still hope for our NHS yet!

signature ribbonSM

 

 

 

My Azathioprine Adventures

azathioprine-falling-sick-and-always-tired-copyIt’s been a while since I threw myself down the Azathioprine rabbit hole, so perhaps it’s time for a quick recap of the ‘fall’ so far.

In a nutshell: finally got a prescription, acted like an ostrich, started meds, felt like shit, got used to meds, bloods went loopy, got taken off meds, 3 weeks of cold turkey, back on meds.  Makes my head spin just thinking about it.  Makes my head spin just thinking about it.

Follow my journey into a Lupus-filled sort of Wonderland:

 

The perfect Lupus video for kids

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!

Youtube video 2

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.

signature ribbonSM