‘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!

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Current status (say no more)

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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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A dog walk too far

At the start of the week, I looked in the mirror and realised my total lack of exercise is starting to play havoc with my waistline.  Too many comfort calories and that muffin top is threatening to develop into a brioche.  And that, if left unchecked, could very well morph into a farmer’s loaf.

Time to get up and moving, I told myself.  On Monday I wheeled out my bike, brushed off the cobwebs and went out for a very gentle cycle.  All good so far;  I was still standing, all limbs working and one whole biscuit’s worth of calories burned off.

So the next day I woke up brimming with good intentions.  And then made the fatal mistake of thinking I could do more than I can.  Silly me, why do I keep letting my wishful thinking hijack my common sense.

I did the school run by foot and decided to live dangerously: I took the long way home. I’m only talking about a few extra roads and a quick detour via the park, but oh boy, what a difference an extra half an hour can make.

By the time I’d carried a happy, wet pooch through the house, I was fit for absolutely nothing. Yawning, exhausted and zonked out on the sofa.  I never learn, as my husband was quick to remind me.  ‘I only suggested you walk to school and then come straight home’, he pointed out, ‘not traipse around the entire village’.

Clearly, it was a moment of pure madness and one I’ve paid the price for all week. Argh. It makes me want to jump up and down and scream that I can’t do something as basic as walk the dog without knocking my body out.  All that effort to work off one sodding biscuit on Monday and I’ve probably eaten an entire packet since.

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When diagnoses are a bit like buses

My journey to diagnosis was a long and frustrating slog, to say the least. Partly because it’s a very difficult thing to diagnose and partly because no one would bloody listen.  I often felt tempted to just give up trying to find out what was wrong. On a regular basis, I lost all faith in the medical profession.  Lupus Bus

Bus stop sign Looking back I now know that my Lupus kicked in years ago. The first sign was the terrible pains in my legs and hips;  some days they got so bad I could hardly stand up.  I went to our local doctor in Australia (where we were living at the time) but he didn’t have a clue.  He sent me off for x-rays but nothing showed up.  He didn’t really bother to investigate beyond that, even though the pain continued.

Eventually, I found myself a chiropractor, who told me I had one leg shorter than the other. Diagnosis completed, as far as she was concerned.  I was then sent to a podiatrist who made me a heel lift to wear in all my shoes.

What a proud Forest Gump moment that turned out to be.

Of course, no one wears shoes in Australia, they wear thongs (that’s flip-flops to you and me), so it doesn’t take a genius to work out you can’t wear a heel lift on a Croc. So painful hips, one leg longer than the other and then limited to trainers in the 40-degree heat.  Oh, how I laughed.

Of course, the heel lift did nothing to help the underlying issue that was Lupus.  Funny that seeing as being a bit stumpy in the limb department has absolutely no bearing on one’s immune system.

Adding to the drama further I then suffered a very miserable 3-month bout of vertigo. The full on type where the world spins around you, not the fear heights.  Heel lifts no longer become such a concern as I could barely stand up without falling down.

This was later followed by a night where breathing became tricky and I lost feeling in both my legs.  An ambulance was called and I was whisked off to the local A&E.  The doctors were once again clueless. They tried to put it down to me overexerting myself at the time. The fact that at the time it happened I was calming sitting down, eating a yogurt and watching Greys Anatomy.  So nothing ever came of that episode either, except of course an $800 bill in the post for the pleasure of my ambulance ride.  Australia sure isn’t the cheapest place in the world to be sick.

Fast forward a year and I’m back in the UK.  Out of nowhere my fingers suddenly started to go numb at the drop of a hat.  One minute totally normally, the next I’d have a full set of bloodless digits; they looked like the hands of a corpse that’s been washed up after several weeks at sea.  Not pleasant at all, but BINGO, suddenly I had my first diagnosis: Raynaud’s phenomenon.

Dodgy hips, random pains and unexplained bouts of tiredness continued, and then fast forward another year and my eyes were now dry and burning and my mouth felt like a forgotten flip-flop in the Sahara Desert.  BINGO again. It’s Diagnosis Number 2:  Sjögren’s Syndrome.  Bit like buses these damn diagnoses.

I honestly can’t even remember how, why or when they reached my final diagnosis of SLE.  For some reason, my GP failed to tell me she was even testing my blood for other things.  So I suppose it stands to reason that she would also forget to tell me what they had found out.

The first I knew of it was during a nurses appointment at the hospital.  Just a simple check up I thought, after having my numb, wrinkled fingers x-rayed and my dry, itchy eyes scanned.

So why am I seeing you today? I enquired of the lovely lady in blue.
I’m your Lupus care nurse, she said.
Why do I need one of those? (sometimes it takes a while for the penny to drop)
Because you were diagnosed with Lupus a month ago, she said.
Oh. Right. Good to know. 

Queue much crying by the time I’d reached the car.

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Vampire nurses and stubborn veins

Really exciting day lined up: I’m getting my bloods done.

With no appointment booked it was a case of turning up and queuing up. The waiting room, as ever, stank of old people, wee, and misery. Just as well there were no free chairs; there’s only so long you can wrinkle your nose and hold your breath. Far better to sit out in the corridor, watching the world and their sickly mother shuffle past as you repeatedly check a ticket counter that refuses to budge.

After all these years of being stabbed, drained and tested, bloods don’t usually bother me. Following my recent stay in hospital, however, when three separate doctors left my arms black and blue for weeks, it appears my body is now somewhat reluctant to play ball when offering up vital fluids.

“My, my, haven’t we got small veins,” said the nurse brusquely, as she pinched, prodded and slapped my arms a little too enthusiastically for my liking. She was obviously expecting said veins to leap to the surface and present themselves, like lambs to the slaughter. They refused to come out of hiding. She wasn’t impressed.

“Perhaps my veins don’t like you.”  Is what I’d like to have said, if I wasn’t restricted by good manners and the knowledge that the vampire nurse was brandishing a bloody great needle with my name on.

With the customary “just a small scratch”, she punctured my skin with all the grace and care of a stampeding bull. I swear my backside cleared the seat by a good couple of inches, causing the now embedded needle to jump around in my flesh. I yelped (in my head; stiff upper lip and all) and glared at the top of her head. Wretched woman. Had she used a Dyson DC39 to suck the blood out of me I don’t reckon it would have hurt much more.

“That was really painful,” I wailed when the damage was done. I waited for the reprimand but instead her face fell and she looked genuinely gutted. “I’m so sorry, I don’t know what I did differently.” She looked flustered.

Well, didn’t that make me feel guilty as hell. I ended up apologising to her for my discomfort: for my tiny, uncooperative veins; for leaping from the seat; for causing the needle to move; for my pre-existing pain having made it an altogether more unpleasant experience – for both of us.

By the time I slunk out of there I’m pretty sure I’d taken enough of the blame to restore her faith in her own needle skills. At least I hope I did, or God help Number 88 in the queue.

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