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.

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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.
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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!

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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!

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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.

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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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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.

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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.

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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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The two faces of Lupus

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.www.sickandalwaystired.com

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 greatare 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.

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The one who knows me so well

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. 

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