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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Jeez, make up your mind already.

Today I received a letter that made my eyebrows shoot up and my hackles bristle. Three weeks after being told (via a nurse on my voicemail) to come off my Azathioprine, my rheumatologist now tells me (via a letter to my GP) that I didn’t actually need to stop them at all.  Please ‘start them up’ again, the letter said.SickandalwaystiredAzathioprine

Just like that, as if it’s as easy as popping Smarties.  Give me strength.  Every time I tell myself that those in charge of my health couldn’t cock it up anymore, they seem to find new ways to surpass themselves.

In the letter, there was no reference to the fact I shouldn’t even have been told to stop taking them; or that the nurses who told me to do so clearly didn’t get their instructions from him: the man in charge.  There was no acknowledgement that if my GP hadn’t bothered to write to him in the first place, he’d have been unaware I was even off the drug.  Rather alarming, that.

There were certainly no apologies for unnecessarily messing around with my treatment.  And of course, no thought of the fact that ‘starting up’ this drug is a horrible, painful process that takes many months of adjustment and makes you feel like a big pile of cold sick.  Or, that having to come off this drug for no apparent reason has resulted in another equally unpleasant and painful few weeks.

No, none of that.  Just a ‘please tell her to start it again’.  Now, what was I saying about needing that Empathy class again?

To make it all that little bit worse, it took them an age to even let me know.  For some unknown reason, it seems the hospital department can manage to pick up a phone and ring me when passing on the wrong message, yet when it comes to putting it right, that has to be done via snail mail.  And by second class, it would appear.

A whole bloody week it took them to dictate, type up and post that letter; then another three days till it landed on my doormat.  Where’s the logic in that?  A simple 30-second phone call would have gotten me back to where I needed to be an awful lot faster, and spared me that extra seven days of cold turkey blues.

So here we go again.  First I had to psych myself up for starting the Azathioprine, then I had to get used to feeling like death.  As soon as I was feeling better, I had to deal with coming off them again – and go back to feeling crap.  Now, I’m back at square one and preparing to start all over again.

Am I feeling amused?  In a word, no.

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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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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.

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Day 96: well, that’s that then

After reporting my last set of dodgy results to the rheumatology hotline two days ago, I picked up a voicemail today telling me to ‘stop taking my methotrexate straight away, arrange another blood test for next week and then give them a call – leaving a message if I couldn’t get hold of anyone.’

That was it.  There was no discussion about reducing my dosage again; no explanation about why my bloods were behaving erratically; no ‘we need to see you to talk about your options’;  no reassuring me everything was in hand; no nothing. Hell, they didn’t even get the right meds.  The last time I checked I was on azathioprine, not methotrexate.  It’s rather disconcerting when the people in charge of your health can’t get even the basic facts right.

So here I am right now, a mixed bag of emotions ranging from frustration and disappointment to anger and relief.  I know, I sound like the character line up for Inside Out.  Or should that be:Inside Lupus

The more observant among you may have noticed that Joy is missing…

First in the line-up is frustration: it took me a good four months to psych myself up to take the drug in the first place, not to mention the endless weeks after I started, when I felt like absolute shit.  This all feels like it was for absolutely nothing.  The disappointment is because it’s only very recently that I’d finally started to feel the benefits – and it was giving me a sense of hope.

Then there’s the anger because I can’t believe the prescribing, monitoring and stopping of a medication like this is handled in such a haphazard, ‘no one really gives a damn’ way.  Come to think of it, I’m not even sure my care team would have noticed something was up if I hadn’t called to let them know.  Slightly disconcerting.

And then finally there’s the relief, which admittedly seems to contradict the three emotions that go before.  Only yesterday I read a blog that reminded me about the links between taking these chemo drugs and the increased risk of cancer further down the line.  I had a mini meltdown (the 100th of the week) and all my worries that I had to block out just so I could swallow the first pill came flooding back.  I started to second, third and fourth guess the decision I’d made.  What if I was ‘borrowing time’ now to control my Lupus pain, but as a result, would increase the chances of that ‘time’ being snatched back in the future by a deadlier disease?

Of course, it’s an unproductive way to think as no one can predict what lies ahead and there’s such thing as a correct answer.  I guess the question is: what price do you put on the quality of your present life and what risks are worth taking?

I feel quite wrung out by the whole experience, but I guess it was worth a shot. Being a person who believes that everything happens for a reason, I’ll just put it down to my body deciding this wasn’t the right treatment for me.  How very rational and Zen that sounds, even to me!

So until someone with a medical degree tells me what happens next, it’s onwards and upwards, I guess.

If you want to recap on the whole azathioprine drama, it started from here: The Indecision MonthsDay 1, Day 3, Day 7Day 10, Day 20, Day 60 and Day 94.

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