🔔 🕚 🤝 🌎 🕊 🎖
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.
🔔 🕚 🤝 🌎 🕊 🎖
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.
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!
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.
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.
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.
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.
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.
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!
It’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:
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!