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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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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Day 94: what do you mean I’m abnormal?

Four weeks, multiple blood tests and endless phone calls later and I get the feeling things aren’t going so well.  Well, isn’t that just typical.  My energy levels are finally up and the pain’s under control, but lo and behold my treacherous body just ain’t having none of it.  I ask you, if you can’t even expect a bit of loyalty from your own skin and bones, what hope is there.

I’ve had one set of dodgy blood results after another.  One minute I’ve got a low white cell count and poor liver function; the next my white cells are on the up but my bilirubin levels are elevated; the next my liver is feeling happier but my white cells are dropping off and as for my neutrophils, well they’re now going into free fall.

For the record, I haven’t got the foggiest what’s actually going on inside me right now.  I know I should probably be all clued up on what’s what, but I haven’t the faintest idea what a neutrophil is, does or even looks like. Or, for that matter, why my GP is currently freaking out because I should have more.  Her last message on my voicemail told me to call her back immediately to discuss my ‘abnormal results’.  Sugar coat it why don’t you.  Naturally, this sent me straight back to panic station central.  I’ve decided, I don’t want to be sick anymore. Can someone stop this train and let me get off?

I probably wouldn’t be so alarmed if I thought my rheumatologist gave a damn – but it definitely doesn’t feel that way.  From where I’m sitting, it seems that he gave the OK to pump my body full of chemotherapy, then, job done, buggered off to do something more fun himself.  Like golf perhaps, or a spot of fly fishing.  After years of seeing him religiously every 6 months, I’m now not scheduled to check in with him again till January 2017.

What the hell? Another 8 more months of this stuff and I could have grown an extra limb or a set of gills. Or turned a fetching shade of radioactive blue.  I’m thinking something along the lines of Jennifer Lawrence in X-Men, just with smaller, post-breast feeding boobs and considerably less muscle definition.

Rewind to Day 60.

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Day 60: it was all going so well

The last five weeks have all been a bit up and down;  some days I’ve felt great and other weeks have been a total disaster.  The last couple of weeks have been particularly bad, however, but until today I just couldn’t work out why.  I knew I hadn’t been ‘pushing’ myself (no base jumping or tiger wrestling) yet the brain fog well and truly descended upon me and I’ve had the energy levels of a snail.

The reason for this became clear, following my third blood test on Monday.  I had a call this morning to say my GP needed to speak to me about my results. I admit I freaked out, just a little.  In my experience, doctors rarely call you at home to tell you anything you’d actually want to hear.  The last such home call I received was from a different doctor, telling me I had to see a neurologist immediately as my life was in danger.  But that’s a whole other story.

A flurry of phone calls ensued between my GP, the rheumatology nurses, the rheumatologist and myself.  Apparently, my white cell count and my neutrophils were crazy low, and this put me at a much greater risk of infection.  I swear I could feel my chest tightening and a tickle in my throat as soon as she told me.

If you so much as cough or sneeze or feel slightly hot or unwell you must come into the surgery straight away, my GP warned me.  But I’ll never get an appointment, I pointed out. Consider this a fast past to get in whenever you need, she assured me, just say you have to be seen as a matter of urgency.

Hmmm, look forward to trying that one out on the bull dogs receptionists who man the surgery phones.  They seem to regard every enquiry for a same-day appointment as a completely unreasonable and unnecessary request.  I once had to throw myself, weeping and wailing across the counter top before they reluctantly ‘allowed’ me to see a doctor.

To cut a long story short, my azathioprine dosage has now been cut by 50mg to see if this will bring my bloods in line.  I’m also back to vetting all my visiting friends in case they or their offspring are infectious or sick.  My melodramatic self is now picturing having to live in a vacuum packed bubble for the rest of my life.  Yes I know, I’ve already told myself to get a grip on reality and calm down.

Rewind to Day 20.

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Day 20: light at the end of the tunnel

Twenty days in and things are definitely looking up.  Not only am I feeling almost human again, I no longer look like an extra from Thriller.  

I’ve gone up to my final daily dose of 150 mg and I had my first blood test on Monday. Thank heavens my local nurse is better with the needles than the last one, as I’m going to be seeing an awful lot more of her going forward.

The best news so far is that (fingers crossed, wood touched) some of the excruciating pain from my hands and arms seems to have calmed down a little. This in itself is a monumental moment as I’m now able to push doors open, pick up a cup of tea and hold my husband’s hand without wincing and grimacing. Understandably that last one was starting to give him something of a complex!

My energy levels are still on par with a hibernating bear, but baby steps and all.  I’m reminding myself that first and foremost I was put onto the Azathioprine to help with the pain, so anything else that improves is a bonus.

Rewind to Day 10. Fast forward to Day 60.

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Day 10: feeling bleurgh

A week and a half into these meds and I’m feeling absolutely bloody awful.

Skin tone for today is at least fifty shades of grey, with a dash of sickly green thrown in for good measure.  If Farrow & Ball were to name the colour, I’d say it would probably be a toss-up between ‘Deathly Pallor, ‘Decaying Corpse’ or ‘Watery Vomit’.  To make matters worse, my skin is also purging a year’s worth of impurities.  This ain’t good and it sure ain’t pretty.

Things don’t improve much from the neck down.  All four limbs feel like they’ve been encased in concrete and my bones continually ache.  Random sharp pains are jabbing me in the back.  My hands are sore and all scrunched up like arthritic old claws.  Body temperature wise I’m fluctuating between early menopausal flushes and Arctic chill.

I think my brain has short-circuited;  it’s spluttering along on just the one cell. The most it can deal with today is TOWIE, and even that’s proving a struggle.  God help me, I am in trouble.

Yup, it definitely feels like I’m grinding to a halt here. What the hell is happening in there?  And how much worse does it get before it starts to get better?

Rewind to Day 7.  Fast Forward to Day 20.

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Day 7: troublesome hormones & tardy tooth fairies

It’s now a week since starting the Azathioprine and there’s still no sign of the green scaly skin, tail or special powers.  More importantly, there’s still no sign of nausea either.  The dosage does however double today, so there’s still the chance I’ll be inhaling ginger biscuits by bedtime.

I had yet more interrupted REM sleep last night, though this time is was down to a 2am tooth fairy panic.  Mid-dream I suddenly remembered that the bloodied offering from my son was still sat awaiting collection at the end of his bed.  Tempting as it was to blame this on a tardy Tinkerbell, I staggered downstairs to fetch a coin and write a fairy thank you note.  Admittedly I could have skipped the note (this bit involved bright lights and a hunt for a pen) but tiredness is never an excuse for bad manners.  By the time I swapped the canine for cash and returned to bed I was wide awake.

So here I am, still feeling dog tired and looking rough. Of course, there’s nothing unusual about that.  It’s a Lupus + chronic fatigue + monthly hormone thing. Obviously I didn’t (but probably should have) calculate exactly what time of the month it was before starting these new pills.  This being the week I normally sleepwalk through the day and neck painkillers like smarties for the pain in my hip.  Incidentally, I’m still waiting for a doctor to explain to me why my overactive monthly hormones cause me to flare up in this way.

Normal tiredness aside, my body has felt extra rung out this week;  more battered around than usual.  My head has also felt a little extra woozy and a lot foggier in the brain department.  But all-in-all, physically speaking, everything seems to be going OK so far.

Perhaps the hardest bit to deal with has been knowing I’m on this stuff. It’s the unnerving knowledge that my immune system will now be ‘suppressed’ and my body is much more vulnerable to attack.  I’m already eyeing up everyone who coughs and sneezes within a 100-metre radius; to me, they’re a potential threat.

Being this tired every day means you spend rather a lot of time horizontal, dreaming up one possible undesirable scenario after the other. I am currently picturing my already traitorous blood cells (who throw all of their energies into attacking their host body), now picking up their placards and going on a strike.  And without them, my body becomes an unmanned, unprotected hotspot for every passing bacteria, germ, and virus looking to invade.

How can this scenario possibly end well?! Now, where did I put that face mask?

Rewind to Day 3. Fast forward to Day 10.

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Day 3: looking like death

What a difference 50mg of something horrible can make.

Last night I woke up at too bloody early o’clock.  From 4am to at least  5.30am, I lay there, panicking because I couldn’t get back to sleep.  It didn’t help  that my husband had hijacked half my pillow and the dog was talking in his sleep.

Unsurprisingly I woke up this morning looking and feeling like absolute shit.  Death warmed up, I think would the appropriate terminology.  Actually, make that death warmed up, reheated, eaten and then regurgitated all over the floor.

Had someone come to my front door today they would have been greeted by a yawning, pale and clammy looking individual with puffy hamster cheeks (my husband’s words, not mine) and eyelids that drooped below my eyelashes. Definitely not a day for selfies, that’s for sure.

Having felt pretty good since starting the Azathioprine on Monday,  I’m hoping today was a result of sleep deprivation, not a sign of things to come.  On a positive note, there’s still no sign of the nausea I was dreading.  I’ve already put in 8 collective months of morning sickness over the years so I can well do without any more of that, thank you very much.

Rewind to Day 1. Fast forward to Day 7.

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Day 1: down the rabbit hole

Ok, enough with the faffing.  My level of indecision has reached such ridiculous heights it’s threatening to bring on my vertigo.  I’ve finally decided to grow a pair, take the damn pills and sit back and see.  Just how bad can it be?

SickandalwaystiredAzathioprineA couple of things helped me make up my mind.  First up was the feeling that I was being selfish.  If Azathioprine offered a shot at living a more ‘normal’ life,  then I certainly owed it to my children to give it a go.  This could be my chance to stay awake for what’s left of their childhood before every one of their memories involves a sleeping mound under the blanket.  It’s time to think and act in the present.  Any worrying health problems that may lurk in my future (or my overactive imagination) will just have to be dealt with further down the line.

Secondly,  I asked the advice of those ‘in the know’.  No, not doctors, those with more of a clue.  Medical professionals may be trained and have letters after their names, but in all seriousness, who’s in a better position to tell you how it is:  someone who dishes out the toxic tablets but doesn’t ingest them or the poor sods who already take them.

With this in mind, I sent out a plea for advice on a Facebook Lupus page.  Straightaway I was inundated with positive replies, encouragement, and reassuring advice.  There was just the one negative response, citing liver damage, so I quickly skimmed over that before my paranoia had a chance to take hold.

‘Take it, do it’  was one person’s advice. So this morning I did.

I felt a little bit like Neo inThe Matrix.  If I take the green pill, I get to stay in Wonderland and see just how deep this rabbit hole goes.  Here goes nothing.

Matrix Neo Chooses The Red Pill

 

 

 

 

 

 

I’m not quite sure what I was expecting to happen after I swallowed it.  A drum roll perhaps? Or maybe for my skin to turn green and scaly and a forked tail to suddenly grow?  After months of worry and stress, it all felt like something of an anticlimax.

Perhaps the biggest let down was finding out that despite disappearing down the rabbit hole, I’m still unable to move in slow motion, stop bullets mid-air or walk upside down on the ceiling.  I reckon Morpheus was dealing much stronger stuff than my rheumatologist can lay his hands on… Fast forward to Day 3.

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