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.
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.
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.
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:
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.
For the last week, I have been living under a cloud. A great big, heavy cloud that has hovered above my head and pressed down on me like tonne of bricks.
I’m not sure why this dark cloud descended on me one night, nor what started it or where it even came from. How this unwelcome visitor snuck into the house and got past the dog, I have no clue; he normally barks at everything.
At the beginning of last week, I was feeling quite bright; the last of the azathioprine was loitering in my blood stream and I had some spare energy still knocking around. So to make the most of this ‘get up and go’, I did stuff. I did a lot of stuff. I did way too much stuff. And then I paid the price.
By Thursday I was flagging, by Friday it was all too late. Engines off, power down, body into battery saving sleep mode. My ‘get up and go’ had got up and gone. Bugger it, why me and it’s not fair – I hate Lupus.
That day and the three that followed could most definitely be classed as inside the house days. I didn’t really move more than I had to, just a slow scuffy shuffle from room to room. I couldn’t be bothered to do anything, think anything or feel anything. I didn’t want to read, write, rest, eat or brush my hair. Worse still, I didn’t want to talk, laugh or even smile. I’d completely lost my happy.
Sure I’ve had slumps before, but none like this. My mood was as flat as a Dover sole. But why? Everything in my life (health aside) was great, yet I felt utterly miserable, desolate even. I also felt strangely detached from everything and everyone around me, and I didn’t know how to reconnect. Worse than that, I couldn’t summon up the energy to even try to reconnect.
Thank God for my husband, the one who knows me so well. He watched, waited and persevered. He tried every trick in the book to chip away and dig me out from my pit of misery and gloom. It took a painstaking line of questioning, several pick axes, a crowbar and a box of tissues. Oh, and a box of my favourite Lindor chocolates.
Two days on and I’m still not sure what that was all about. Perhaps it all stemmed from my frustration and despondency over the great medication fiasco. Or perhaps my brain was short wiring from months and months of erratic sleep. Or maybe my body was simply objecting to going cold turkey after months on the drugs.
Whatever the reason, I’m hoping that wretched cloud stays well away and doesn’t invade my home or head space again.
sickandalwaystired.com 