🔔 🕚 🤝 🌎 🕊 🎖
They shall grow not old, as we that are left grow old;
Age shall not weary them, nor the years condemn.
At the going down of the sun and in the morning
We will remember them.
what is lupus
Grumbling Stomach v Patient Care
Last week I had my check-up with the rheumatologist – an annual highlight of my social calendar, alongside sorting the car’s MOT and having a smear. As a rule, these appointments generally consist of 1 part disappointment: 1 part frustration: 2 parts total despondency. They go something like this:
I arrive at the hospital with a well-prepared list of questions – I’m feeling positive, in control and determined to be heard. I queue to get into the carpark, hand over a fresh pot of wee, get weighed and then wait. And wait. And wait. I eventually get summoned.
I sit, he asks ‘So how do you feel?’ and I answer ‘Terrible‘ (that’s always a given). He flicks his eyes across my notes and promptly declares that my bloods are looking good. Less than two minutes after entering the room I am leaving it. All my well-prepared questions are unasked and unanswered, my positivity is completely squashed and my ‘in control’ voice has been gagged and muted. I scuttle off to the ticket machine, often in tears and always fuming – at him for making me feel so unimportant, at my body for being so useless and at myself for not having the balls to speak up more.
Why consultants (particularly male ones) seem to have the ability to render me a pathetic, jibbering wreck who actually feels guilty for taking up their time, is a complete mystery to me. I think perhaps it’s the overpowering God complex they use to hypnotise patients with.
I wonder, do other people also feel ‘sshhhed’ into submission by all-knowing consultants, or is it just me? And what about male patients? Do they let themselves get steamrollered too? Answers on a postcard – or in the comments below!
Anyway, where was I? After a lengthy queue at the machine, I find out that once again I’m over the allocated ‘free’ parking time by 0.2 of a second, despite my appointment having only last two minutes. I also realise I don’t have enough coins to pay. So I leave the queue and join another, having to buy myself a muffin from the overpriced cafe just so I can get some change.
The muffin is invariably dry and totally inedible; it’s the final insult to an already depressing trip. The muffin ends up in the carpark bin, I promptly scrape the hubcap against the pavement while trying to negotiate the hairpin bend of the exit and then, low and behold, I see that the ticketing barrier is permanently up.
Like seriously? Is there anything more annoying than being made to pay for something that you don’t even have to?
On this last trip, for the first time, I decided to take my husband with me for back up. I thought perhaps this might counteract all that testosterone swirling around the room. I also wanted him to experience Dr Complete Lack of Bedside Manner for himself.
Sadly, on this appointment, it was not to be.
Being the last patient of the morning shift, Dr CLOBM (as I shall now refer to him) had decided to skip his customary two minutes with me and head off early. The first I was aware of this was when a registrar called me in and said he’d be filling in for Dr CLOBM as he’d been called away for a ‘meeting’. Had he heck, a meeting with his stomach perhaps. My husband had already clocked him in the corridor, heading for the exit and telling his medical student to go on and get them a table for lunch.
I know! What a bloody liberty! The man only has to see me once a year, couldn’t he have overcome his hunger pangs for the couple of minutes that he normally allows me? After all, there’s plenty of other things I’d also like to be doing with my precious energy rather than queueing up, giving wee, getting weighed and waiting.
As it turned out, he and his grumbling stomach had done me an almighty favour. As the fill-in registrar had not yet reached the lofty pay grade that causes ears to stop working, he actually took the time to listen to me and answer my questions. Even more of a revelation: he asked about the pain I’m in and, for the very first time, properly acknowledged my fibromyalgia. Halle-bloody-lujah.
He examined my hands (never happened before) and tested the fibromyalgia pressure points on my body (certainly never happened before; didn’t even know they were there). He also explained why my memory is currently shot to shit, and how and why my body wasn’t able to deal with the pain. He then referred me to the pain clinic.
Thank god Dr CLOBM had considered himself and his plate of foie gras and chips more important than seeing me that day. For the first time, I left the hospital feeling vaguely upbeat: not because I think I’m going to be ‘cured’ with revolutionary tips on pain management, but because I’d finally been allowed to have a voice.
When you live in a world ruled by chronic illness, where doctors control your drugs, your future and your fate, being ‘heard’ is a monumental achievement – as much as an achievement as when Armstrong went for a stroll on the moon.
So that’s one small step for (chronically ill) me, one giant leap for womankind.
‘Top 10’ things that chronic fatigue ISN’T
Following on from the last blog about unwanted opinions, here’s my ‘Top 10’ list of all the things that chronic fatigue isn’t.
Feel free to print it off and wave it around in the faces of all those doubting non-believers! Better still, why not download the PDF, print onto A3 paper and stick multiple copies around your home or place of work!
When opinions come thick and fast
There are just so many helpful people out there in the world, all rushing to give their opinion on what chronic illnesses are or aren’t, and what they think will cure them. Opinions that are, more often than not, based on judgmental presumptions, half-baked facts and an irrelevant article they once read about an entirely unrelated medical condition. A condition that was (according to Bella magazine) miraculously cured by dancing naked in the moonlight whilst chewing on the roots of a cactus plant.
Granted, sometimes these opinions do come from a place of caring and concern, but that doesn’t mean they sound any less patronising, insulting or annoying. Accusatory is how they often come across. Like we’re somehow greatly exaggerating how we feel. Or perhaps all these ailments are really just in our heads. Or maybe there’s a glaringly obvious solution that we simply haven’t bothered to find out about for ourselves.
“You haven’t got the first bloody clue. Please remove your interfering beak from my business“. Is what you want to yell. But you don’t.
Who knows, perhaps it’s human nature that makes people always feel obliged to offer up an opinion or want to ‘fix’ things they don’t fully understand. A bit like a man, I suppose, who when presented with a problem, will always try to solve it, instead of just dishing out the sympathy that’s required!
Having read countless posts on countless Facebook forums, it would appear that the majority of these uninvited and insensitive opinion givers are often those found closest to home: the spouses, parents, siblings and friends of the chronically ill. People, in other words, who you’d expect to be offering empathy, sympathy and a whole lot of understanding.
I think the trouble here lies with so many of these conditions (Lupus, Sjogren’s, fibromyalgia, CFS, chronic fatigue, chronic pain etc) being an invisible illness – and one that often involves two very different faces. So unless the opinionated person in question has seen firsthand the fatigue or symptoms at their very worst, they can’t even begin to comprehend how life-changing and debilitating such a disease can be.
On the other hand, all these unsolicited opinions could just be down to that person being a thoughtless, self-involved, mentally draining, arrogant arsehole. And if that’s the case, telling them to sod off out of your life is probably the simplest solution of all.
Spinning right out of control
As weekends go, the last one wasn’t really the best. Actually, it was probably one of the worst, in the grand scale of things. Recent bugs, a helping of stress, cold weather and general exhaustion proved too much for my useless body, so it decided to teach me a lesson I wouldn’t forget in a hurry.
When emptying the (what felt like 100th) load of washing on Friday, the room suddenly tilted so violently, I nearly fell head first into the basket of wet towels. Strange, I thought, best I sit down for a bit. By the time I made it to the sofa, everything was spinning around me at quite an alarming speed. I could quite easily have been sick there and then, but knowing the cream chair covers would require immediate cleaning proved enough of a motivation to kept my partially digested lunch where it belonged.
Feeling as if I was walking at a right angle, I slithered up the stairs (past a rather alarmed looking son) and made it to the safety of the bed. Lying down didn’t help much, in fact, it made things worse. The insides of my head were now spinning too, and in the opposite direction to my body. I felt 
like I was trapped on one of those horrible tea-cup waltzers.
When I woke up an hour later, it was dark, I was sweating like a beast and I needed the loo. The trouble was, however, as hard as I tried, I couldn’t seem to get up. All I could manage was to shuffle a bit and that just made the world tip. Panic set in – big time. I came to the conclusion (as you do) that I might have had a stroke. Either that or the vertigo was back with a vengeance.
For those who think vertigo is merely a fear of heights, it is not. Vertigo is a horrible, nightmarish infliction that can disrupt and ruin your life for months on end. The thought of it returning fills me with a constant dread.
Trapped under the duvet, my only option was to ring downstairs for help. Thank god for the ever-present mobile that was finger distance away. It took four unanswered calls and a feeble “help me” before the cavalry came charging up the stairs. By this stage, I was beside myself. I couldn’t sit up, stand up or walk; my body simply refused to comply. Then the weeping and wailing kicked in, and, as we all know, once you go down that road it’s impossible to stop until you run out of clear airwaves to breath through.
It’s hard to explain the range of emotions when pain, panic, wretchedness and fear collide. Feeling so utterly helpless is a scary, scary thing. Not understanding what the hell was happening, or why it had come on so fast, made it scarier still. At that point in time, I was utterly convinced it was never going to stop, or, worse still, if I went to sleep again I might never wake up.
It took a day in bed before the room eventually stopped spinning. It took another 48 hours before my body was functioning at a relatively ‘normal’ level again. Ridiculous as it may sound to some (though I know many others will certainly relate) for days afterwards I felt as if I’d undergone a major trauma. If I’m honest, I’m still slightly shell-shocked by the whole thing now, and more than a little unnerved.
I have to say, it’s at times like this that I really hate how life can be. And I worry about what exactly the future might bring.
Day 274: hibernation here we come
Blimey, I’ve just counted and it’s 139 days since the last ‘Azathioprine update’. That’s 4 blood tests, 4 lots of results, some random appointments and a whole lot of readjusting since I went back to ‘Square One’ in July.
On the whole, it hasn’t been too terrible and there’s still no green, scaling skin, newly grown limbs or unusual superpowers to report. The worst of the joint pain is still being held at bay (hurrah) and I’m definitely a hell of a lot more mobile than I was this time last year, or the one before that, or the one before that…
Fatigue-wise, it’s all much of a muchness, but that was always going to be the case. There is NO drug, quick fix or cure for chronic slothitus fatigue, more’s
the pity. What I have learnt, or rather, what I keep learning, but never seem remember, is this: I can manage day-to-day as long as I do absolutely nothing.
Ok, that sounds a bit bleak, I admit. What I mean is, as long as I don’t try to push myself, be overly ambitious, think I’m more capable than I am or do anything resembling reckless, I can, for the most part, get stuff done. That said, I still have very regular relapses when energy levels are at zero, zip, zilch and nada.
The approaching winter is, however, definitely throwing up a few curve balls. During the last 6 weeks or so I’ve bounced from one thing to another, never quite having the chance to come up for air or recover in between. Is this down to the Azathioprine? I’m not entirely sure.
Having put the infection and headache behind me, I promptly came down with the flu. Not that I actually realised it was the flu, until I was already halfway through the whole aches, pains, coughing and wretched snivelling. That, in itself, just goes to show how many horrible symptoms someone with Lupus will pass off as ‘normal’ before they even entertain the idea that something else might actually be wrong.
Just for the record, I did line up with all the OAPs in the village for my flu jab this year, but clearly, that wasn’t worth the nasty pain in the arm it gave me. Either the head honcho at the Influenza Immunisation Programme picked the wrong strain to target this year or my body plans on surrendering to every single virus comes along.
With a cough still lingering a couple of weeks later, I’m now wondering just how well my now suppressed immune system is going to fare this winter. I’m practically housebound as it is, and when I do go out, the cold weather shocks my body into one sort of head-to-toe meltdown after another.
So I choose to stay inside, dress in fleece onesies and whack up the thermostat. A perfect solution, you might think, except for the fact the central heating seems to bring on a whole host of other problems: even drier eyes, terrible headaches, sniffs and sneezes, additional tiredness, wooziness and increased brain fog. But turn off the heating and the Raynaud’s and general miserableness kicks in.
I think that’s what you call a lose-lose situation.
So, what pray is the answer? Rethink my choice of drugs? Completely avoid civilisation? Wear a full germ resistant biohazard suit? Or perhaps I should just do like a hedgehog, disappear under a pile of leaves and hibernate till Spring?
Either way, I am slightly concerned that by the time the trees have regrown their leaves in 2017 I’m going to be translucent in shade, socially inept and adding muscular dystrophy to the list of woes.
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.
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.
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.
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.
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.
* 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.
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.
At 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.
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.
sickandalwaystired.com 