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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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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Life with Lupus? It’s all a bit sh*t

So what is it like to live with Lupus? Good question and thanks for caring enough to ask; most people never do.

Lupus is an unpleasant little disease that drains the life out of your body and time out of your life.  It can result in frequent hospital visits, constant tests and enough medication to make you rattle.  It can cause teeth-grinding levels of pain, uncontrollable exhaustion, terrible brain fog, facial disfigurement, dark thoughts, loneliness and an immense feeling of loss.  And that’s just the start.

In short, Lupus is a disease that can rob you of the life you planned to lead.  Future plans have to be reassessed, expectations lowered and energy levels micro-managed down to the very last ‘spoon’.

This may sound like a rather dramatic synopsis, but it isn’t.  It’s actually the harsh reality many Lupus sufferers have to deal with every single day.

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World Lupus Day 2016

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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 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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