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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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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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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A video that sums it all up

Now here’s a brilliant video that every spouse, family member, friend, colleague and boss should be asked to watch. Under duress if necessary!

Well done and thank you to Lupus UK for summing it all up so brilliantly.

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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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A dog walk too far

At the start of the week, I looked in the mirror and realised my total lack of exercise is starting to play havoc with my waistline.  Too many comfort calories and that muffin top is threatening to develop into a brioche.  And that, if left unchecked, could very well morph into a farmer’s loaf.

Time to get up and moving, I told myself.  On Monday I wheeled out my bike, brushed off the cobwebs and went out for a very gentle cycle.  All good so far;  I was still standing, all limbs working and one whole biscuit’s worth of calories burned off.

So the next day I woke up brimming with good intentions.  And then made the fatal mistake of thinking I could do more than I can.  Silly me, why do I keep letting my wishful thinking hijack my common sense.

I did the school run by foot and decided to live dangerously: I took the long way home. I’m only talking about a few extra roads and a quick detour via the park, but oh boy, what a difference an extra half an hour can make.

By the time I’d carried a happy, wet pooch through the house, I was fit for absolutely nothing. Yawning, exhausted and zonked out on the sofa.  I never learn, as my husband was quick to remind me.  ‘I only suggested you walk to school and then come straight home’, he pointed out, ‘not traipse around the entire village’.

Clearly, it was a moment of pure madness and one I’ve paid the price for all week. Argh. It makes me want to jump up and down and scream that I can’t do something as basic as walk the dog without knocking my body out.  All that effort to work off one sodding biscuit on Monday and I’ve probably eaten an entire packet since.

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I’m not lazy, I have Lupus

One of the more annoying things that people can say to me is ‘wouldn’t you feel much better if you exercised more?’  To me, that sounds an awful lot like ‘heave your untoned arse off the sofa and stop lazing around every day’.  But maybe I’m just being paranoid?!

Hmmmmm, exercise they say?  Now that you mention it, it does seem like the most obvious of cures.

Silly, silly me, how could I – or my doctors, come to think of it – not have thought of this sooner.  Let me flush all these unnecessary prescription pills down the loo, skip to the gym and body pump this chronic disease right out of my system.  Perhaps I could jump up and down, take a run, climb a rock, go for a swim or crunch my body into submission.  Who knows, once I’ve zumba-ed my way back to perfect health, maybe I’ll be able to walk on water, or, better still, turn H20 into wine!

I nod and smile through gritted teeth. Yes, I agree, it would definitely be good to do more regular exercise, but sadly that’s not always an option for me.  Most well-meaning and tactful people stop dishing out advice at this point.  But there’s always one. The one that never knows when to reel it in and zip it up. These people I could happily slap.

But why not, they want to know.  Exercise is ever so important they say.
Hold the press, groundbreaking theories being formed here:  Had I considered, perhaps, that it is my very lack of exercise that’s making me ill?

Had you considered, perhaps, that you’re getting on my very last nerve?

Have I tried a particular type of yoga? they enquire.  It’s called the Born Again Dying Swan and it’s all the rage.  Originates from the monasteries of ancient Tibet, apparently;  best-practised butt naked and balanced on a 2-foot pole in temperatures of exactly 89.9 degrees. Cures cancer and better than botox, so their best friend’s mother’s nutritionist said.

OK, enough now. I know in your head you’re trying to mean well, but out here in my world, you’re not.  Please just SHUT UP.   Why? Because in this instance you have absolutely no clue what you’re talking about.

Clearly, I know that exercise is good for you; it stops you getting fat and keeps you healthy.  Yes, I also know it can make you feel energetic, pumped up and happy to be alive.  But here’s the bit you don’t get.  For some people (that would be me) it can also wipe you out and leave you in a whole heap of pain.  A gentle walk or an overly ambitious bout on a yoga mat can cause joints to swell, nerve ending to burn and limbs to feel like they’ve been shrouded in concrete.  It can make my arms hurt and my bones ache.  And as for those incredible little endorphins that exercise releases? Believe me, when I tell you they’re simply no match for out-and-out, dog-tired exhaustion.

So yes, exercise is good and healthy and fun.  And yes, moving faster than a sloth on a regular basis would no doubt do wonders for my pathetic muscle mass and wobbly bits. But here’s the issue I have: there is simply no way of telling how much is too little or too much.  An extra 10 minutes in the wrong direction with the dog can be my undoing; there are no warning signs and there’s no going back.

So please people, quit with your well-meaning advice and consider this. Living an often sedentary life is most certainly not a life choice.  It is frustrating, boring and incredibly depressing.  Every single day I miss what my body used to be able to do and it often makes me cry.  In the good old days, I used to spin, swim, gym and downward dog with the best of them. Hell, I even kickboxed my way around the mat once upon a time.

So believe me (and every other medically induced couch potato) when I say nothing gets our backs up more than being told exercise will ‘make us better’.  No one is more clued up on possible treatments and ‘miracle cures’ than us, and if it were as simple as that, don’t you think we’d be out there pumping, squatting and peddling along with the best of them.

A little bit of sympathy and understanding, on the other hand, would go along way to making us feel better.  Ditto for flowers, chocolates, and dropping by for a cup of tea when we’re feeling low!

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