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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Good doctors are an endangered species

From personal experience, I know just how long it can take to find a really good doctor. When I say really good, I mean one who’ll not only listen, pass the tissues and nod sympathetically in all the right places but also act on what you say and actually get something done.

Whether you’re at the local surgery or in presence of the lesser-spotted and rarely sighted rheumatologist, I find that half the time, these medically trained mortals are an impatient bunch. They sit, stopwatch in hand waiting to shoo you back out the door as soon as your allocated time slot is up.

As it is, I aways feel like a raving hypochondriac, as I hurriedly work through my pre-prepared lengthy list of ‘new’ symptoms.  During most appointments, no matter how fast I talk, I barely manage to get past the ‘Top 3 things I absolutely need to ask’. My handbag is now full of crumpled up old scraps of paper covered in unanswered questions and angry-looking doodles.

I often walk away from appointments feeling irritated and let down.  I rarely feel any more clued up (on why I feel so shit) than before I went in.  Many times I’ve been in floods of tears by the time I’ve reached the car; on one embarrassing occasion, I didn’t even make it to the parking ticket machine before the snivelling began.

I had assumed that once my Lupus had been diagnosed, the whole doctor situation would improve.  Back then I still had the optimism of course.

My first rheumatologist was absolutely useless.  Perfectly sweet and highly qualified she may well have been, but with all the personality of a bag of limp lettuce.  More worryingly, it seemed to me that she had little idea what to do regarding my treatment, and no obvious intentions of coming up with a plan anytime soon.

Every six months I’d return to her office and list the same issues and complaints; problems which were, unsurprisingly, getting worse with every visit.  Her response was always the same: she’d mutter and mumble about my bloods and tell me she ‘understood’. Now, ‘nicey-nicey’ isn’t really my bag at the best of times; certainly not when I’m looking for some decisive medical intervention.

The extent of her ‘treatment’ was recommending that I ‘stretch out’ the crippling pain in my hips when it got too bad.  Give me strength.  I didn’t wait for over 2 hours on a suspiciously sticky waiting room chair (not to mention many years just to get the appointment) to be told that.  If I could have fled the scene of the crime undetected, I would have throttled the useless woman then and there.  Luckily for her, I calculated that with my pronounced limp, I’d have likely been apprehended before I even made it as far as the nurses’ station.

When the stretching didn’t fix the pain (no medical degree needed to realise that one, Sherlock) she sent me off for a six-week ‘getting back on your feet’ physiotherapy course at the local old people’s home hospital. Dear god in heaven, what a truly hideous experience that turned out to be.  I was easily the youngest in the room by at least 40 years, yet still the only one unable to lift my legs up off the mat on command.  Pain and humiliation in one.

It was only when I mentioned to my Lupus nurse that I wasn’t exactly ‘enamoured’ with my allocated rheumatologist, that she told me I could request a transfer via my GP.  I hadn’t even known that was an option.  She recommended I try a different, slightly more pro-active doctor in the department i.e. one with less small talk and hand wringing and more ‘jump to it’ action.

A couple of months later I rocked up to see my new rheumatologist.  He promptly sent me off for an MRI, which in turn confirmed I had massively inflamed and swollen hip joints and a spattering of arthritis to boot.  Clearly, no amount of gentle stretching or cycle classes for the over seventies was going to sort that out.

A few short weeks later I was sent for a cortisone injection into each hip; a week after that I was practically pain-free and could finally walk again.  Halla-bloody-lullah.

That’s not to say the current rheumatologist is perfect of course, far from it really.  To this day I have still to get through my list.  And I often walk out frustrated and on the verge of tears.  But I guess the important thing I have to remember is that at least I can walk out now.  If I’d stuck with my first rheumatologist I’d probably still be ‘stretching it out’.

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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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Why is Lupus so difficult to diagnose?

Lupus is a chronic and complex disease that can throw up many different and often bizarre symptoms – symptoms that can vary greatly from person to person and often randomly come and go over weeks and months.

It’s known as ‘the great imitator’ as many of these symptoms mirror those of other, far more common conditions.  This makes the little bugger that much more difficult to diagnose.  To make things trickier still, there is no single laboratory test that can determine if a person has Lupus, and a test result may be positive one time and negative another time.

It’s safe to say that this certainly isn’t the most helpful or cooperative disease to have!

Before you can be branded with that great, big, ugly, Lupus stick, the doctors will have to look at your current symptoms (there are plenty of these for your body to pick and choose from), your blood test results, your full medical history and the medical history of your close family members.

The blood tests are used to assess your general state of health, check if you have an infection, see how well certain organs, such as the liver and kidneys, are working and screen for certain genetic conditions.

The first test off the starting block is the erythrocyte sedimentation rate (ESR) test, to determine whether there is any inflammation in your body.  This is quite a useful little indicator as Lupus has a habit of making various joints and organs swollen and inflamed.

Next up is the anti-nuclear antibody test (referred to as the ANA test)  the test you will probably hear about the most.  This test is to check whether there is a certain type of antibody cell in your blood, known as the anti-nuclear antibody.  Approximately 95% of people with SLE have this antibody, but it’s also possible to have the anti-nuclear antibody without having SLE.  In other words, this test needs even more tests to back it up. Useful!

Following in hot pursuit is the anti-DNA test, which also checks for a certain type of antibody in your blood, known as the anti-DNA antibody.  Sadly having this antibody means chances are you do indeed have SLE.  Of course, the level of anti-DNA antibodies increases if you’re having a flare-up, so that can be pretty changeable too. Oh yes, and the antibody is only found in around 70% of people with the condition. Even more useful still.

Finally, there’s the complement level test.  Complement is a chemical in the blood that forms part of your immune system. The level of this chemical may be tested to check how active your SLE is. The levels decrease when your SLR  is more active.

All test results will probably be sent directly to your GP and your rheumatologist to mull over.  In all these years no one has ever bothered to tell me what the results have been, possibly because I’m only the patient on a need-to-know basis,  more likely  because I wouldn’t have a clue what any of them actually mean.

I’m just a humble little patient, not a doctor, so to read more in-depth info about the different laboratory tests required, you might want to have a nosey here.

Of course, the tests don’t stop once you’ve been diagnosed.  Once you have SLE it is possible to develop other conditions, such as kidney problems, so regular monitoring will be necessary to check for any changes or complications.  Certain medications also require regular testing to make sure everything still working as it should do.

You may also need to have scans, such as an X-ray, ultrasound scan, magnetic resonance imaging (MRI) scan or a computerised tomography (CT) scan to check whether SLE is affecting your internal organs.

All-in-all it can often take years for a Lupus diagnosis to be made.  To hurry up the whole painful ordeal it certainly helps to find yourself a sympathetic, empathetic and medically clued-up doctor who will take your symptoms seriously, and then move heaven and earth to get you treated.

Happy hunting and good luck!

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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 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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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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