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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Living like an ostrich

Since my last post I’ve been hibernating; hiding away through the darkest, coldest, wettest months of the year.  Pretty much ignoring the rest of the world, if the truth is told.  Not very good for the social life or the soul I know, but solitude was what was needed.  Now the sun, squirrels, and daffodils are back out I feel it’s time to get on with the year.

First on the agenda for 2016 is to pull my head out of the sand and deal with the pressing issue at hand: Shiny new medication.  To take or not to take, that is the question.

SickandalwaystiredAzathioprineBack in October, a lovely little drug called Azathioprine was offered up for grabs.  Obviously, I agreed to give it ago (it seemed the polite thing to do).  I duly picked up my first stash, brought them home and flung them into the kitchen cupboard.

Four months later and there they still lurk, tucked away behind the first aid kit, some leftover One Direction party cups and enough (unopened) alcohol to fell a perfectly healthy liver.  Alcohol, it has to be said, I’m clearly never going to get around to finishing off if I start taking these pills.

Apparently it takes 3 months for Azathioprine to kick in and start making a difference.  So had I started taking the stuff straight away I could have felt like a whole new woman by now, or at the very least, half of a whole new woman.  But like with most medicinal items, they only get to work when they’re inside your system, not sat when they’re sat in the box.

So why haven’t I got on with it? Good question.

Ostrich-with-head-in-sand-illustrationDuring these past few hibernating months I’ve done an ‘ostrich’.  I buried my head firmly in the soft furnishing and pretended the tablets weren’t there.  Not a very sensible, grown up thing to do, I know.   I’ve honestly had every good intention of popping the first pill out, and on the days and weeks when the pain got way out of control, I regularly convinced myself I’d start tomorrow.  Then I’d sleep on it, bottle it and change my mind.

The reason for this is quite simple: fear. Fear of taking such a ‘serious’ drug; fear of the short-term nausea, fear of the long-term side effects, fear of an even more useless immune system, fear of catching every passing bug, fear of shingles, fear of my liver failing.  And let’s not forget the fear of going back to my rheumatologist without having done what I’ve been told.

So there it is. You name it, I’ve feared it.  Looks a bit ridiculous when written down I know, but deciding whether to ingest horrible chemicals into your body as part of an ongoing daily routine is a hard call to make.  Especially when you alone can make that call.

Worrying about it has stopped me sleeping properly.  It has niggled away at the back of every thought.  It has made me analyse and over think, and then analyse some more.  And so the ostrich has remained, hoping that while it’s head remains firmly buried, the whole blinking problem will just go away.  Eventually I bit the bullet

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Pointless questions and shiny new drugs

Had my twice-yearly Lupus MOT yesterday, and as ever I went in armed with plenty of questions and came out with even less of a clue.  Realistically low expectations successfully achieved again.

The annoying thing was I actually look forward to these appointments, bizarre as that may sound.  After months of pain there’s always a sense of hope to be had when speaking to someone in the know; in this case, it’s my rheumatologist.  Also known as my go-to dealer with a prescription pad offering a choice of pick-me-up injections and ever stronger pills and drugs.

So armed with a pot of warm wee and my kindle I trotted off to the hospital with a slight bounce to my hobble.  Breaking with NHS tradition there was no queuing for me that day.  I was whisked onto those weighing scales (I wish they’d let me take my boots off, they’re really rather heavy) and into pole waiting position within minutes. So far, so good.  My positive attitude went up another notch.

“So, how are you feeling?” he asked.  What an unoriginal question, can’t these doctors at least make the effort to jazz it up a bit.

“Not great, tired as usual.”  My standard Lupie reply.  Then I realised I best seize the moment, so I got into my stride. “Actually, I’m continually exhausted, I struggle to stay awake and I’ve had to give up my job.  I’ve got horrible pains in my arms that leap from joint to joint, my bones feel bruised and my skin is too sore to touch.  I recently spent two days being prodded and poked by four different hospital departments and I seem to bleed at the drop of a hat. Oh yes, and my hips still hurt when I walk.”  I was quietly pleased with this synopsis, especially given the diminishing state of my memory.

“Well, your bloods aren’t looking too bad, have you been overdoing things perhaps?” I gritted my teeth.  Have I been over doing it? Hmmmm, let’s think.

(In the words of Craig David) I went swimming with sharks on Monday, scaled the side of a mountain on Tuesday, entered an Iron Man triathlon on Wednesday, base jumped the Shard on Thursday and wrestled a tiger on Friday.  The weekend was mainly a quiet affair.  Just a few body pump classes and a bit of caber tossing up North.  No, I don’t think I’ve been overdoing things at all.

“I’ve barely left the house,” I said, “I did, however, clear out a kitchen cupboard last Thursday (after the Shard jump) and it took me 5 days to recover.  Does that count as overdoing it?” No, I didn’t think it did either.

You see, here’s the frustrating thing about this shitty little disease: bloods tests can often lie. On paper I shouldn’t be feeling any worse than I did before, but in reality, I feel like crap, I hurt all over and staying vertical is a perpetual struggle.

The doctor’s solution on this particular visit?  Firstly a possible new diagnosis to add to the list (fibromyalgia) and the suggestion of some different drugs to try.  Part of me was rather pleased to make a bit of progress.  Part of me was thinking ‘Jesus, how can I possibly consider this progress and why on earth am I pleased?’  But that’s the nature of the beast I guess; sometimes it’s just nice to have a new name to put the pain.

So next up to the table is Azathioprine, an immunosuppressant drug used to prevent organ transplants from being rejected.  From my so far limited research, it works by suppressing or reducing the strength of the body’s immune system.  In the case of Lupus this is meant to help calm down the pain and fatigue.  Of course, the downside of suppressing or reducing the strength of your body’s immune system is that it also makes an already defenceless body even more susceptible to every blinking germ, bug, and virus that’s floating around.

As far as I can see it’s a toss-up between ‘exhaustion and pain’ v ‘hot and cold running infections’.  What a cheery choice to make.

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