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.chronic-fatigue-sick-and-always-tired

 

 

 

 

 

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.

energy-meter-sick-and-always-tiredAt 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.

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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.

 

 

Dr. Pitbull takes charge

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.

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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.
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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!

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My Azathioprine Adventures

azathioprine-falling-sick-and-always-tired-copyIt’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:

 

The perfect Lupus video for kids

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!

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What is chronic pain?

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.

mallet-sick-and-always-tired-comAs 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.

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Jet lag & Chronic Fatigue: a crippling combo

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.

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Jeez, make up your mind already.

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.SickandalwaystiredAzathioprine

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.

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Current status (say no more)

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An unwelcome visitor came to stay

sickandalwaystired.comcloudFor 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.

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The two faces of Lupus

These days there are definitely two versions of me: the ‘inside the front door’ me and the ‘facing the world’ me.  Same species, same person, same DNA, but oh my, you wouldn’t believe how different I can look.

My ‘inside look’ is quite a sight to behold: yellow/grey/green tinged skin; hooded, burning panda eyes; well past needing a wash hair, dragged up into a top-knot; a chicken legged hobble when I walk.  And then there’s the uniform of the chronically ill: the baggy t-shirt, hoodie, all-day pajamas, tracksuit bottoms, leggings combo. Plus fluffy socks and slippers, obviously.  Wearing a bra very much comes down to the mood on the day and how much extra effort will be required.

Very few people are unlucky enough to be subjected to this terrifying, unfiltered version of me.  My husband and kids take the brunt of it, and they’re so used to it now that, god love ’em, they don’t even flinch.  The postman is also subjected, but I do tend to hide behind the dog when opening the door.www.sickandalwaystired.com

On the odd occasion, this ‘inside look’ has actually made it past the end of the drive, but I do try to limit this to the ‘beyond too tired to give a shit’ days.  Normally these outings involve the school run when I scuttle into the car wearing completely inappropriate night-time clothing and large dark glasses.  My poor daughter only has to spot me from across the car park, slinking down behind the wheel, to know what sort of day it’s been.

These momentary blips aside, when I head out with a chance of meeting people I will always make an effort to spruce up.  If for no other reason than when you look like death, people have to pretend they haven’t noticed, and it all becomes a bit awkward.

My ‘outside the house’ look is a throwback to the pre-Lupus days.  Preparation for this is like an episode of DIY SOS, sponsored by Batiste dry shampoo and the entire Bare Minerals range.  First up is the need to change into items of clothing that aren’t shaped like a bin bag and made entirely out of misshapen cotton, lycra or fleece.

Then there’s the makeup.  Thank god for the makeup.  It can take a skin tone from exhausted, jaundice chic to healthy, sun-kissed glow in a matter of minutes.  The trick, I have learnt, is not taking the transformation too far.  Like I did a month or so ago when my husband felt the need to point out I was looking a little too ‘just back from a holiday’ for the middle of an English winter.  Hair straighteners are a must, obviously.  Finally, remove slippers, add shoes and ‘ta daaaaaa’.  From half dead to healthy looking in a jiffy.

But here’s the bugger.  The moment you make an effort to look like a healthier version of yourself, people think you’re cured.  Or worse still, they think you were never really that sick in the first place.

You’re looking greatare you feeling better then?” they ask.  Now there’s a tricky one to answer.  Your illness is not their problem and of course they mean well, but…

No, definitely still sick, just caked in makeup, rattling with pills and forcing a smile,” would be the honest reply.  But who wants to hear that, it’s a guaranteed conservation killer.

I’ve found it’s best to just keep it simple and lie.  “I’m fine.” usually does the trick.

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