Get outta of my head

Today was the first day in over a week that I woke up and didn’t wince.

For the last 8 days I’ve had a killer headache that just wouldn’t shift. A migraine-like nightmare that has made me sound sensitive, light-sensitive, heat sensitive, people sensitive and living sensitive.

headache-sick-and-alwaystired-comIt’s felt like a 100lb block is crushing down on my scalp, sharp spikes are stabbing into my eye sockets and a metal band is wrapped around my forehead – a metal band that some sadistic little bastard is screwing tighter and tighter into my temples every time I move.

This has made me feel nauseous, dizzy and as grumpy as hell.  It’s hurt to look, think and move, and as a result of this, I haven’t been able to really do anything or go anywhere. I’ve mainly moped from room to room, moaning a lot and clutching my head. Writing anything was pretty much out of the question, as sitting in front of my computer screen was like staring at an eclipse with my eyelids taped open.

Every morning last week, I opened my eyes, reassessed the pain levels and thought ‘shit, here we go again, there’s another day ruined.’  When there’s no end in sight and the tablets aren’t even making a dent,  8 straight days of headache can seem like an eternity.  That’s 192 hours, 11520 minutes or 691200 seconds of feeling like utter crap. For heaven’s sake, we’re told God created the entire universe in less time than that, including the 7th day when he sat back, relaxed and admired his work.

Sadly, I am all too familiar with the whole ‘headache’ scene.  I spent a large chunk of my childhood experiencing the varied delights that a migraine has to offer: flashing lights, dancing black spots, exploding head, spinning rooms and wall-to-wall puking. Thankfully I rarely get a fully blown migraine these days, although they have been known to creep up on me in seconds if I do something foolhardy.  Like, tilt my head back, for example.  Lesson certainly learned that particular day: never attempt to paint a ceiling.

A trip to the Vatican’s Sistine Chapel a few years ago also proved rather pointless, when I realised I was unable to look up and see the paintings on the ceiling – the paintings being the very reason for the visit in the first place.  Of course, by the time I’d walked a good 3 miles through museum’s long (and frankly boring) corridors to get to the chapel, my hips had long since given up on me and I had to limp into the room and have a sit-down.  Adding insult to injury, after lining up to touch St. Peter’s foot in the Basilica, and putting in a request for a cure, my health has only gone from bad to worse.  Seriously Pete, where’s the love?!

With Lupus, Sjogren’s, vertigo and a Chiari malformation all sticking the boot in, these days the headaches are pretty much part and parcel of my everyday life.  I would, in fact, be more surprised if an entire week went by ‘headache free’.  Keeping on top of this amount of pain requires the stashing of tablets in every pocket, bag, room and drawer in the house.  I batch buy every week just to keep up with the demand.  I’m pretty sure my local supermarket thinks I’m stocking up for one big Armageddon style hurrah.

Making life that little bit easier still, the listed side effects of both Azathioprine and hydroxychloroquine are… wait for it… headaches.  Seriously people?  Is there no break to be had here?

With Lupus being a disease that affects the nervous system, sufferers are statistically twice as likely to get these migraine-like headaches.  Lupus headaches, they call them.  Yes, someone obviously put a lot of time and effort into thinking up that name, didn’t they.  Tension-types headaches are also more prevalent.  I totally get that.  Having Lupus definitely makes me grumpy and tense.

The Systemic Lupus Erythematosus Disease Activity Index (SLEDAI) – a scoring system often used in Lupus research – describes a Lupus headache as a “severe, persistent headache; may be migrainous, but must be non-responsive to narcotic analgesia”.  Narcotic analgesics, by the way, are drugs that ‘relieve pain, can cause numbness and induce a state of unconsciousness’.  You’d think that unconsciousness would probably be enough to stop the pain, surely?

As ever, with such medical theories, opinions and statistics, there are ‘people’ who dispute the notion that people with Lupus could possibly suffer from a specific headache.  Dare I suggest these non-believers don’t have Lupus, don’t get the headaches and don’t have the first bloody clue.

Try living inside my head for the last 8 days and just maybe they’d have a fresh perspective and a totally different viewpoint.

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Oh, give me strength

Forgive me while I scream.

Back in August, I clocked in at the hospital for a check up with my Lupus nurse.  It was one of those ‘we understand, we care’ sort of appointments.  I told her how let down I felt by those overseeing my healthcare.  I mentioned I was concerned about my periodic bouts of doom and gloom.  I said I was worried the Azathioprine might not be doing its job.

Fear not, she reassured me, I’ll book you an appointment for 3 months time, that way I can double-check you’re ok and see if the meds are on track. Offer accepted and appreciated.

Then yesterday I received two letters in the mail.  The first informed me that my appointment in November has now been cancelled; they hoped this wouldn’t cause me too much of an inconvenience.  The second letter said my appointment had now been re-booked.  For 8th August 2017.

2000 and bleeding 17.  I admit I did a double-take on the year.  Then I swore.

How reassuring that one minute they deem it necessary to check I’m not wallowing in depression or taking ineffective meds, then the next I’m put on hold for another 10 months.

I’d like to say I was shocked to the core, but I’m not.

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Note to self:

You stupid girl.  The next time you feel like this crap, please drag your head out from under the cushions and pay attention to the following symptoms:

When your lungs feel starved of o2 and every breath hurts – it should not be ignored.  When it feels as if a boa constrictor is wrapped around your chest, crushing your ribs  – it should not be ignored.snake-sick-and-always-tired

When you wheeze like a smoker for no good reason – it should not be ignored. When your body feels extra depleted, done in and defeated  – it should not be ignored.  When your skin turns an even sicklier shade of grey – it should not be ignored.  When you’re hacking up mucus the colour and consistency of gloopy Ambrosia custard – it should not be ignored.

You silly, silly girl.  All these symptoms are not ‘normal’, even in your messed up world.  Quelle surprise, you have a lung infection.  And that, my dear, will not quietly disappear without a helping hand, no matter how deep into denial you dive.

So now you can add another eight little steroid tablets to your breakfast menu and wait to see if they do the job.  What’s that, you moan?  14 tablets with your granola is just too much to bear?  Perhaps you’ll remember that next time…

Look on the bright side at least.  Best case scenario: you’ll perk up and soon be back to your usual Lupusy self.  Worst case scenario: come the weekend you’ll have  bulging muscles and be ready join the ladies Russian shot put team.*  A result either way, it has to be said.

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* I jest, of course, these steroids don’t turn you into a super athlete overnight.

Want to know how ‘Chronic Fatigue’ feels?

How best to describe what chronic fatigue feels like?  Perhaps the most effective way would be to compare it to some more relatable ‘everyday’ scenarios.

So here goes:

Imagine you’re midway through an atrocious bout of flu.  No, not the sneeze and sniffle sort that men call flu, I’m talking the full works: body aches, pounding head, cold sweats, chills, and the raging fever sort.

Now, with your energy levels already running on 50%, you head to the airport and embark upon an epic 24-hour flight.  The seat isn’t big enough to swing a hamster in and the food is inedible at best.  An irritating child kicks you in the small of your back for hours on end; your body now feels even more bruised, battered and achy than before.

Sitting in the dark and surrounded by 100’s of snoring strangers, you feel isolated and totally alone.  You give up trying to sleep and watch film after film to pass the time, but this makes your eyeballs sore and sandpaper dry.  You’re desperately thirsty, but as you’re pinned in by the window you can’t risk a full bladder.  Five films and two rock-hard bread rolls in, you realise just how far you still have to travel and you begin to feel a bit beside yourself.

By the time you arrive at your destination you look, feel and smell like death.  As you exit the plane, you’re hit in the face by a 50-degree heat and a 90-degree humidity.  You’re feeling weak, disoriented and so dizzy from exhaustion you can hardly stand.  Your brain is completed shrouded in fog and you can barely remember your own name.

By now you’re running on 30%, tops.

Fast forward to that night and your body is moving in slow motion. Your use of speech is limited to grunts and your concentration levels  are shot to shit.  You’re convinced you’re battling the worst diagnosed case of jet lag ever.  But still, it’s holiday time, so you decide to hit the town.  Copious amounts of alcohol and some rather suspect street food later, you collapse into bed.

The next morning, before you even struggle to prise open your eyelids, you realise something has gone terribly wrong with your body.  Panic starts to set in and you feel scared and vulnerable.

Your battered limbs feel as if they’ve been encased in cement and bolted to the bed.  Raising your head from the pillow is a step too far.  It’s as much as you can do to twitch one finger.  You soon come to the conclusion you’re suffering from the worst diagnosed hangover ever.

Despite having slept all night, you’re now running on 20%.

Eventually, your body starts responding to basic requests and you heave yourself into a sitting position; it takes another good few minutes of concentration before you can stand.  You decide it’s probably safer to sit down on the floor while taking a shower.  Hot water helps with the aching bones, but washing your hair is out of the question, as your arms aren’t strong enough to lift above waist height.  Ditto for teeth, so you resort to resting your elbows on the sink while you brush.

By the time you’re clean, you’re running on 10%, max.

Heading out for a day of sightseeing, you attempt to climb (what appears to be) the steepest hill you’ve ever seen.  Everyone else seems to be overtaking you at speed, but putting one foot in front of the other is proving something of a challenge.  It feels as if you’re wading through treacle; every step takes concentration and requires way more energy than you have.  You hit the wall.chronic-fatigue-sick-and-always-tired






By the time you go to bed that night, every limb is on fire and you’re so knackered you can neither think nor speak.  Another shower is certainly out of the question.  Nausea is coming in waves and you think you might be sick.  You pray it’s not that dodgy street food from the night before.

Climbing into bed you expect to fall into a deep and wonderful sleep – but you don’t.  Despite being delirious with exhaustion you lay awake for hours on end.  You need the loo at least 6 times and each time it’s a mission to get out of bed.  It’s now something stupid o’clock in the morning and you’re wondering how it’s even possible to experience extreme fatigue and insomnia at exactly the same time.

energy-meter-sick-and-always-tiredAt most, you’re now scrapping the barrel on 5%.

The next morning you wake up, peel open your eyelids and realise you still feel exactly the same as you did the night before.  The thought of facing another day like yesterday is just too much.  You could cry.

A full night’s sleep and you’re only back up to a measly 10%.

That day, you lay on the bed and do absolutely nothing.  You can’t bring yourself to read, watch TV or even talk.  By night-time you’re back down to 5%. You don’t sleep well and the next day you wake up feeling exactly the same sodding way.  And so it goes on.

Occasionally, after prolonged periods of rest your body charges back up to 50% – you feel pretty bloody fantastic.  But then you go and ruin it all by trying to do too much.  A slap on the hand for being overly ambitious and back down to 5% you go.

Weeks pass.  Months pass.  Years pass.  You’re forced to accept that this is now the new ‘normal’.

You hate your illness. You hate your body.  You hate what you can no longer do. Your doctors tell you there is no cure for chronic fatigue, just ‘rest’.

You could cry.  You often do.

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P.S. The description above may sound highly unrealistic and incredibly melodramatic, but take away the unlikely chain of events, and the rest (in my experience) is the bloody depressing reality of living with chronic fatigue.



Dr. Pitbull takes charge

Recently something I never thought possible happened: I stumbled upon the very best GP in the world.  Who knew such a doctor even existed?  I’d certainly given up all hope of hunting down such a rare and mystical beast.  Up until this point, I’d have probably given better odds to coming down one morning and finding a unicorn eating breakfast at my kitchen table.

It was a friendly, blood-taking nurse who originally pointed me in his direction.  I’d been having a moan about the less than impressive medical care (namely the great Azathioprine fiasco) I’d experienced recently, saying I felt completely let down.

I know just the doctor for you,” this nurse told me.  “You’ll like this one, I promise.  He really cares and he’ll definitely fight your corner; he’s like a pit bull.


It all sounded too good to be true, I thought, but worth I punt, so I made an appointment to see him. A month later (yes, it can sometimes take that long to get an appointment) I rocked up to the surgery.

Well, blow me down with a feather if that nurse wasn’t right.

He didn’t try to rush me out of my seat or make me feel like an inconvenient hypochondriac.  He asked questions; he listened; he genuinely cared. And then, just when I thought he couldn’t have got any better, he said something that I’ve often thought but would have never dared say out loud, and certainly not to a doctor.

Lupus is a really terrible thing to have,” he agreed.  “If it were cancer, then everyone would know you were sick; they’d make allowances and care a little more.  But I image when it’s a disease like this that no one can see, it must be very frustrating to have it ignored or not taken seriously.”

Well, didn’t Dr. Pitbull hit that one square on the head.  It definitely goes down as the most empathetic thing a doctor has ever uttered in my presence.  And then it got better still.

You don’t have to settle for inadequate treatment, you know,” he continued. “You do have other options“.  This was news to me.  “Would you like me to refer you to the Lupus Unit at Guy’s Hospital in London? ” he asked.

Can you even do that? ” I said, “No other doctor has ever mentioned the place, let alone offered to send me there.

Yes, of course I can, ” Dr. Pitbull said.

This all happened a month or so ago, and, if I’m honest, I’d filed our conversation to the back of my mind, along with all the other pipe dreams that are unlikely to ever happen.  You know the ones:  full health recovery, Euro lottery win, shifting the muffin top – that sort of thing.

And then, out of the blue, an appointment alert popped up on my phone.  Dear god, he’s only gone and done it.  On 10th November I’m getting my foot through the door of the largest Lupus unit in Europe – a place filled with doctors who treat nothing but Lupus every single day.

As if that wasn’t enough of a reason to worship at the feet of my new, wonder GP, in the months since I transferred over to him, he’s also proved to be everything the nurse prophesied and more.  As promised, he emails me the minute my bloods come in to tell me the results and check I’m OK.  He then replies within minutes of my reply, regardless of whether it’s his day off or rather too late at night.

Yesterday, (a Saturday, no less) he took doctor care to a whole new level.  When replying to his email, I said I’d felt terrible all week and couldn’t sleep.  Straight away he came back and asked if I’d like to see him next week.  That would be great, I replied, but I’ll never get an appointment with you.

Low and behold, a few minutes later, another appointment alert for this Thursday popped up on my phone: he’d only gone and sorted it out himself.

Give the man an early sainthood.  He’s single-handedly proved that some doctors are worth their weight in diamonds.  And that, with the right people in place, there’s still hope for our NHS yet!

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My Azathioprine Adventures

azathioprine-falling-sick-and-always-tired-copyIt’s been a while since I threw myself down the Azathioprine rabbit hole, so perhaps it’s time for a quick recap of the ‘fall’ so far.

In a nutshell: finally got a prescription, acted like an ostrich, started meds, felt like shit, got used to meds, bloods went loopy, got taken off meds, 3 weeks of cold turkey, back on meds.  Makes my head spin just thinking about it.  Makes my head spin just thinking about it.

Follow my journey into a Lupus-filled sort of Wonderland:


The perfect Lupus video for kids

It can be difficult to explain to young children what Lupus is all about.  Too much information and they’ll panic; too little and they’ll struggle to understand why you’re fast asleep and their dinner hasn’t even left the fridge.

I thought this short clip below provided the perfect balance.  Thank you Lupus UK for yet another brilliant production!

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