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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