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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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 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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