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’ve already covered what chronic pain is, so now to talk about what chronic pain feels like. Of course, everyone has very different pain issues to deal with, but chances are the overall experience is equally life-changing and depressingly miserable for all involved.
When it comes to that ‘Ouch to the Off The Chart’ pain spectrum I was talking about, for me, personally, it’s often at the upper end of the chart.
When I just had the Lupus to contend with the pain was easier to control, but now Fibromyalgia has joined the mix, my pain is now almost constantly ‘on the move’. A bit like the London Underground, it runs up and down each of my limbs, careering from fingertips to toes and back again. It rarely stays still for very long, just a brief pit stop in each area (giving it time to throb, burn, and ache) and then it’s changing direction and racing off to the next destination. Migratory pain, the doctors call it; makes me think of a herd of wildebeest stampeding across the dusty African plains.
As well as being nippy on its feet, this pain of mine is also rather brutal. It often feels as though someone has taken a mallet to me, and is smashing, shattering and crushing every bone along the way.
It’s not that dissimilar to when you whack your funny bone, and then have to stand completely still while the pain reverberates through your body.
As if feeling like a clubbed baby seal wasn’t stressful enough, there’s also a rather disturbing sensation of electricity and ice-cold water flowing through my veins. Clearly, that’s slightly freaky and unnerving, to say the least. We were all taught in science lessons that electricity and water really aren’t the best of friends. I’m not 100% sure what causes this arctic electric shock of mine. Something to do with the nerves, I think.
Some days the sheer intensity of all this combined pain is so severe it makes me feel nauseous. Just like morning sickness, it comes in waves out of the blue and makes me gag. The pain also makes me weep and wail. I’ve sat in the shower and sobbed, laid in bed and howled, and screamed while driving my car. Music was blaring and the windows were up at the time, so luckily no other road users were harmed or alarmed.
This chronic pain of mine has been going on for about eight years now – with the last six being the worst. Initially, it resided in my hips and legs; my bones would burn and ache every single day. Walking was difficult as my hips would seize up, even when shuffling along the road at snail’s pace. A particular low point for me was being overtaken by an 80 something-year-old man, who was out taking a leisurely Sunday afternoon stroll. With his cane.
There were days my joints hurt so much I couldn’t lift each leg to climb the stairs. I would resort to crawling up, step by step on my hands and knees. Sleeping also proved tricky, as laying on either hip was proving agony. I soon learnt to snooze on my back and keep a large stash of painkillers by the bed. Cortisone injections into each hip proved the only treatment that made a difference, but these were given out sparingly by the doctor and they only lasted 3 months tops.
Then a year or so ago I had a slight lull in the pain. Oh, the joys, what a difference that made – for about a week. Then, fresh from its mini-break, the pain returned and spread to my arms and hands too. Imagine my delight. Walking like an octogenarian is one thing, not being able to lift, pull or open a door is something entirely different.
It was at this stage, and after much moaning and groaning to my rheumatologist, that he agreed to try me on Aazathioprine. After the first couple of weeks of pills, the joint pain almost vanished straight away. Result! A few months when I was (wrongly) told to stop taking them, the pain came straight back. And with a vengeance, I might add. When I started back on Azathioprine for the second time it wasn’t quite so quick to take effect. I panicked that it wasn’t going to work. After a brief reminder of how good life without severe pain really was, I didn’t want to settle for anything less.
12 weeks on and, for the most part, the drugs seems to be doing their thing. As long as, that is, I don’t ‘overdo it’ or forget to get enough rest.
The downside of going on holiday is always the coming back and re-adjusting to the time zone you left behind. Little Miss Jet lag is a bitch to deal with at the best of times; tag team her up with Little Miss Perpetually Exhausted and this body of mine has hit a wall with such force that it’s unlikely to bounce back anytime soon.
Feeling dog tired is hardly an unfamiliar sensation of course, but after such a lovely month away, doped up on ‘holiday adrenaline’ and achieving all kinds of impressive feats, I’d kind of forgotten how terrible ‘lupus tired’ is. I had been hoping the azathioprine would have kicked in behind the scenes and be working it’s magic by now; sadly I don’t think that’s the case.
Since staggering through Heathrow early last Friday morning, my body clock has been all over the shop. I’ve had trouble staying awake and trouble staying asleep. Each morning I’ve been waking up well before the birds put in an appearance. Not waking up and feeling productive, mind you, just waking up and laying there feeling absolutely shattered. Consequently by late afternoon, I’m forcibly peeling up my eyelids to try to keep them open.
Rather than starting to perk up as I settle back into England O’Clock, today – my fourth day home – was the weariest so far. I was so far beyond knackered that by the time I’d eaten my breakfast, I was in need of a nap. The day didn’t really progress much from there. Aside from sewing on two name tabs and labelling some school socks with a pen, all I managed to do for the rest of it was lay on the sofa and binge watch a month’s worth of Sky Plus.
It wasn’t until I wandered into the kitchen just after 8pm that I looked down and realised I’d actually forgotten to get washed and dressed this morning. Clearly, my family is so used to living with a sloth that no one saw fit to even question my lack of daytime attire.
Here’s hoping I manage to function in a more vertical position tomorrow.
When visiting Thailand, there’s no time on the agenda to be aching, sore or ill, so during the last couple of weeks, I have thrown myself into life with great gusto. As those motivating, life-affirming signs always tell you to do, I lived every day to the full; as it were my last, in fact, and to hell with the consequences.
I took a longtail boat out in the pouring rain and explored the islands off the Krabi coastline. I discovered Phra Nang Cave – a shrine of wooden penises! I went snorkeling off of Chicken Island, though sadly there were more Chinese tourists flailing around in the water than pretty fishes in the sea.
I leapt from the top of a tree and into the unknown, soaring above the leafy canopy of a jungle, a stomach-churning 100 feet above the rainforest floor. I said a silent prayer and abseiled down the trunk of an incredibly tall tree.
I fed bucket loads of bananas and sugar cane to some rescued elephants. I stood waist-deep in murky water, washing and scrubbing their tough, bristly skin. I fed carrots to giraffes and stroked their noses; one sneezed on me. Very pleasant!
I experienced the lax and rather unofficial/unpredictable rules of the local road, clinging onto the back of a speeding moped. I visited bustling night markets and had the dead skin on my feet nibbled off by 100’s of fish. I had my knotted muscles and painful joints pummelled to within an inch of my life, and my skin scrubbed down, oiled up and kneaded to that point where pleasure starts to merge into a rather necessary pain. I ate a lot of Thai Green Curry.
And then for the pièce de résistance in this bucket list of physical challenges: I scaled a waterfall. Yes, that’s right, me, a person who often has difficulty making it up a flight of carpeted stairs. I clambered up and down some very steep rocks into oncoming cascading water; barefoot and by hand, no less.
Sadly this impressive feat has nothing to do with a miraculous cure or some newly acquired superpowers. Rather it was down to the limestone mineral deposit on the rocks at Sticky Waterfalls (officially known as Buatong or Bua Thong waterfalls) that turns even the most uncoordinated person with zero balance and climbing skills (that would be me) into a sure-footed, Spiderman-like superhero.
I’m now half way through the trip and it’s time to take regroup and recover; time to deal with those consequences I mentioned at the start. I’m used to the drill and it’s nothing I haven’t experienced 100 times before. But oh boy, why do those consequences have to be such a brutal wake-up call.
I’m into the fifth day of ‘post overdoing it’ agony: bone-jarring, head to toe pain, hypersensitive skin, inflammation in single every nook and cranny and the life-sapping lethargy that makes every set of stairs seem like a mission too far.
Remind me again how the hell I managed to scale a waterfall?!
Of course, I know my body will settle back down in time and forgive me for taking the proverbial. It always does, eventually. I suspect, however, it might take a little longer than normal to bounce back this time. In hindsight, perhaps the Spiderman antics might have been taking things a step too far.
24 hours, three flights, two sick bags and one emergency oxygen canister later, and we have finally arrived in a little corner of paradise called Krabi. Time for some much needed rest and recuperation.
Set beneath towering cliffs in the middle of a tropical jungle, our resort is possibly the most idyllic setting in which to escape from the real world. So far, so perfect.
Day one: crawl out from under the mosquito net for breakfast; scuttle back to bed for a quick nap; wake up at 6pm; swim, eat dinner and then go back to bed. All-in-all a thoroughly exhausting and non-productive day.
Plan of attack going forward: stay awake long enough to actually leave the bungalow and experience Thailand.
Day two: wake up from a deep, coma-like sleep; leave Arctic temperature of an air conditioned room and get hit in the face with a wall of 96-degree heat; stagger to the restaurant for breakfast and eat my own body weight in eggs and papaya. I figure one will counteract the other…
Next for the tricky bit: protecting my sun-sensitive, lupusy skin in an environment that’s not dissimilar to a tandoori oven. First up, a very liberal helping of Factor 50 P20, followed by Factor 50 on the face and a bit more Factor 50 for good measure. Plus, of course, the obligatory hat and big glasses.
So here I now lay, oiled up like a seagull in a shipping disaster, sweating like a beast and hiding under the shade of umbrella by the pool.
So far, so sun safe.
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.
Today I received a letter that made my eyebrows shoot up and my hackles bristle. Three weeks after being told (via a nurse on my voicemail) to come off my Azathioprine, my rheumatologist now tells me (via a letter to my GP) that I didn’t actually need to stop them at all. Please ‘start them up’ again, the letter said.
Just like that, as if it’s as easy as popping Smarties. Give me strength. Every time I tell myself that those in charge of my health couldn’t cock it up anymore, they seem to find new ways to surpass themselves.
In the letter, there was no reference to the fact I shouldn’t even have been told to stop taking them; or that the nurses who told me to do so clearly didn’t get their instructions from him: the man in charge. There was no acknowledgement that if my GP hadn’t bothered to write to him in the first place, he’d have been unaware I was even off the drug. Rather alarming, that.
There were certainly no apologies for unnecessarily messing around with my treatment. And of course, no thought of the fact that ‘starting up’ this drug is a horrible, painful process that takes many months of adjustment and makes you feel like a big pile of cold sick. Or, that having to come off this drug for no apparent reason has resulted in another equally unpleasant and painful few weeks.
No, none of that. Just a ‘please tell her to start it again’. Now, what was I saying about needing that Empathy class again?
To make it all that little bit worse, it took them an age to even let me know. For some unknown reason, it seems the hospital department can manage to pick up a phone and ring me when passing on the wrong message, yet when it comes to putting it right, that has to be done via snail mail. And by second class, it would appear.
A whole bloody week it took them to dictate, type up and post that letter; then another three days till it landed on my doormat. Where’s the logic in that? A simple 30-second phone call would have gotten me back to where I needed to be an awful lot faster, and spared me that extra seven days of cold turkey blues.
So here we go again. First I had to psych myself up for starting the Azathioprine, then I had to get used to feeling like death. As soon as I was feeling better, I had to deal with coming off them again – and go back to feeling crap. Now, I’m back at square one and preparing to start all over again.
Am I feeling amused? In a word, no.