Get outta of my head

October 24, 2016October 24, 2016 ~ Rachel ~ 2 Comments

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.

It’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.

Day 135: hey ho, back to Square One we go

July 5, 2016September 29, 2016 ~ Rachel ~ Leave a comment

The last few weeks have been quite an unpleasant adventure; a throwback to the beginning of the year. From the moment I retrieved my first Azathioprine pill from the ‘useless medication’ basket on top of the fridge, I felt rank. I’m talking room-spinning, head-pounding, limb-aching, swallow down the vomit sort of rank. A bit like morning sickness come to think of it, with a touch of flu thrown in.

I had been hoping that it wouldn’t be so bad the second time around. Clearly, I was wrong. If anything, those lovely little chemicals seemed to get to work even quicker than before. By the first night, I was woozy and spaced out, by the second day my head felt freakishly large and I couldn’t handle bright lights or noise. By the third day I had ground to a screeching halt; I was as good as useless. I spent the entire day on the sofa, gazing at the cracks on the ceiling and feeling bleak.

Like before, it felt as though I had ice water running through my veins and a pair of car battery chargers clamped to my fingers, releasing wave upon wave of electric shocks through my limbs. My bones felt crushed and my chest felt constricted.

When I did make it off the sofa, I didn’t so much walk as drag my carcass around the house. Going upstairs was a painful exercise, both painfully slow to watch and painfully sore to do. Much like a centenarian climbing a very steep hill, I progressed one very tentative step at a time, pulling myself up by the handrail. It was a pitiful and tragic experience.

By the end of the first week back on the tablets I was gradually starting to adjust. Still absolutely shattered of course (is there any other way to be?) but no longer knocking on death’s door. By the end of the second week I was turning a corner.One more restful weekend and I reckon I’d have been feeling pretty sprightly by now, as I headed into the third week.

But then I went shopping. Or should I say, then I went on an 8-hour shopping extravaganza. It was great to be back out of the house and acting ‘normal’, but what was I thinking. Fun it may well have been; sensible or overly restful it was certainly not.

Thus the third week dawned and lo and behold, I felt like I’d been hit with a sack load of wet cement. Back to Square One, I shuffled, feeling sheepish, silly and incredibly sore. Self-sabotaging mission: complete.

Rewind to Day 96.

Day 60: it was all going so well

April 21, 2016September 29, 2016 ~ Rachel ~ Leave a comment

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.

Day 20: light at the end of the tunnel

March 12, 2016September 29, 2016 ~ Rachel ~ Leave a comment

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.

Day 7: troublesome hormones & tardy tooth fairies

February 29, 2016September 29, 2016 ~ Rachel ~ Leave a comment

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.

Day 3: looking like death

February 24, 2016September 29, 2016 ~ Rachel ~ Leave a comment

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.