* I've changed the blog address from www.sarahsworld.me back to the original (badly chosen, but I'm stuck with it) address of www.kiwikchat.blogspot.com .

This means that some links to older posts and old links from other sites don't work. :(

Tuesday, August 30, 2011

The important difference between heaps and piles:

I woke up this morning and looked around my room at all the piles of stuff. 

With my bed at the centre the piles are surround me in order of importance.  Closest is  my most often needed items, several water bottles, glasses, ear plugs, eye masks, my sik bag and b12 needles.  Then still within arm reach, but needing a roll and stretch are books, audio cd’s, dvd’s and chargers. 

A little further away is my jewelry (earrings ‘on’ means a good day), comfy clothes and some normal clothes ready for wearing at a moments notice. 

Then there is the shoe pile, shoes ranging from holey slippers and ugg boots to shiny ballet flats and decorated thongs (no I don’t have a pile of skimpy underwear next to my bed, I am talking about the Aussie version of flip flops) .  The heels are sadly, sigh, stored in the cupboard waiting and waiting.

Taking it all in my heart swells and I grin to myself, everything I need is right here nice and handy.  All neat and tidy in little piles.

I am feeling better again.

I am officially recovered from the post party crash. I attended for 1hr and 1/2 and had one really bad week followed by three below average weeks. 

The messy mixed up heaps of stuff that took over my room during the crash are gone.

Piles I can live with, it’s the heaps I struggle with.

Thursday, August 25, 2011

I’ve always been stubborn.

My phone beeps.

‘I’m starving, can we meet up for lunch? Is there anywhere you can eat?’. Cindy.

I stare down at the text.  I am on a strict diet, the Prince Alfred Hospital Elimination Diet. It has taught me that I am intolerant to salicylates, which are in just about everything with any colour or taste.   I can’t imagine where we could go.

Anyway I can’t sit up at a table, long enough to eat out.

An image appears in my mind, Cindy and I are smartly dressed, effortlessly cool and chic with sleek shiny hair, sitting at a table covered with a white linen cloth and a myriad of glasses and sparkling cutlery, we lean towards each other and laugh over a shared joke. 

People are staring, but we don’t notice them and keep enjoying our lunch, salads flecked with rich cheeses, nuts and sweet roasted vegetables.   We are old friends, the conversation flows easily. There is a bottle of white wine on the table and a cool line of condensation shows that most of the wine has been drunk.  

I really want to be the girl in that image.

I can’t be the girl in that image. 

I feel my abdomen constrict as it always does when I get frustrated, usually just before I do something slightly mad.  My forehead tightens, my jaw clenches and I narrow my eyes.

Oh dear. These are all the physiological signs of an attack of the stubbornness.   Attacks of the stubbornness can be devastating and often lead to over doing it.

I force myself to relax and release the image of a glamorous healthy me.  It’s not a reality I can pretend exists anymore.

I text back,
‘I can eat fish and chips, but need to lay down to eat, so maybe we could pick some lunch up and find a spot on the grass in the sun near the beach?’

She replys ‘okay sounds good cya soon.’

I am still a little worried, I know that even this will push my energy limits a bit too far.  My forehead has gotten tight again. ‘Surely body, you can handle laying down in the park’ I mutter to myself.

Then it starts to rain.

Cindy and I (her hair is shiny, mine not so shiny) end up grabbing a takeaway coffee and driving back to my house where she sits and I lay on the daybed outside and we chat about life, boys and her recent holidays.

The next day I am sicker again as Post Exertional Nueroimmune Exhaustion (PENE) sets in.  It takes me two days to recover back to my normal level of sickness.

I am glad that I didn’t give into that stubborn feeling and do anything mad like go out for lunch at a restaurant.

I am also glad that it rained.

But most of all I'm glad that I was able to catch up with a good friend.

Saturday, August 20, 2011

Anger management

I saw red!  I wanted to help set up dinner for Mum’s 50th birthday party.

I wanted, no needed to light candles, make the table nice, mix the sangria, decorate the walls and prep the food. 

Entertaining and making people feel at home is what I did for a living for years on boats.  I used to run around like a mad thing (trying to look calm collected and relaxed) cooking 3 course dinners, serving cocktails and canap├ęs every night on board. 

So whenever Mum has people over, the little control freak inside of me is dying to bust out and take over (yes I admit it – there is a freaky little person inside me who still thinks she can do everything). 

My whole body was yearning to help out, I could see so many ways to make preparations better, easier and faster.

The same body however can’t actually do anything, it either  feels sick, tired, heavy and can hardly move without wanting to puke or feels fine and tries to trick me into doing too much, for which it will punish me with a weeks of feeling sick, tired, heavy and like puking.

So I tried to stay away, but I really HAD to light a few candles, move the decorations around and set up some nibbles before I finally caught myself in the act and sent the body back to my room. 

Once there I got mad, sad and angry.


Frustration welled up inside me and I had visions of smashing my chair through the glass door.  I wanted to break, smash and ruin something, I felt like stamping my feet and screaming at the top of my lungs.  

But I didn’t.

I calmly sat in my recliner, reclined the seat, eye patch on, ear plugs in, counted to 100, took deep breaths, spoke nicely to myself, thought of beautiful places, furry animals, inspiring people, practised EFT and thought of my happy place.  But still I was furious and seething inside.  Spontaneous combustion seemed imminent.

 Then I took off my ugg boots and threw them across the room as hard as I could at the concrete wall.  

grunt THUMP, grunt THUMP.

Sigh, relief.

And then my feet got cold….

Thursday, August 11, 2011

10 hints for saving shower energy.

I fondly remember the days when a shower was a refreshing revitalizing experience, enjoyed with a multitude of smelly products.

Now they are akin to an extreme sport, likely to leave me shaky and exhausted.  I rest the day before a shower and the day after and occasionally I simply don’t shower. My record is 5 days (don’t tell my DarlingDad, he would freak).

But summer is on it’s way and I can tell that something’s got to change.  I think DD would probably notice if I went more than two days without showering and my hair is really oily (now that the bleach has grown out L).   So MiracleMum has decided to help me out by washing my hair for me. 

Every 3rd day she will wash my hair while I sit in my swimmers on my shower chair.  On the other days I will have quick birdbath showers, so not to waste too much energy down the drain.  

It got me thinking of other ways to save energy...this is what I've come up with:

10 hints for saving shower energy:

1. Plastic Garden Chair: with a high back (if you have room) to sit and relax on while in the shower.   I also take it out of shower when done, so I can sit on it while drying – I use a wrap and relax technique which involves 3 towels and sitting.

2. Products: Organic not smelly shampoo and conditioner for to minimise chemical loading. If organic stuff isn’t working, try Dove. I also like dove soap for sensitive skin and Cetaphil body wash

3. Ask for Help: ask someone else to do the ‘arms up stuff’ for you, like washing your hair.  Think Nicole Kidman in ‘Dead calm’ (without the mass murderer).

4. Good Quality Razor: make sure it's easy to grip and sharp. For girls, legs are going to need more shaving in summer.  I predict a long, light, flowy skirts for me/cfs summerwear and hope to manage smooth ankles and lower calves at least.

5. Natural Anti-fungal: A spray bottle with ½ vinegar and water. A quick squirt at the end of a shower in the ‘nether regions’ can help combat thrush. Okay this is in the realms of TMI and is really only for the girls, but since many people with me/cfs seem to have candida problems I’ve included it.  It’s also handy for cleaning the shower and preventing mould.

6. Dry Hair Shampoo: this is for days when the hair doesn’t get it’s wash. (Helpfully suggested by my psychologist, looking after the mind and the body.) Spray it on, leave for 2 minutes and brush out.  It seems to absorb the oil and dry into a powder...I guess it's a similar concept to spray on carpet cleaner.

7. Bleach Hair: only if lighter hair works for you!  This will make it less oily – of course getting to the hair dressers presents it’s own challenges. (I wonder if I could convince MMum to try this at home).

      8. Heart Rate: Wear a water proof heart rate monitor in the shower. I do this so that I can tell if I'm having a good day or bad day.  If my heart rate's way up I cut short the shower, skip unnecessary things and skeddadle back to the couch.  However if it's relatively low I take advantage of it by doing the leg shaving and other non-urgent maintenance.

9. Cooler Shower Water:  Avoid super hot water, try having cooler showers than normal.  If it's cold in the bathroom use a fan forced heater to heat the room instead of the hot water.  It seems that energy, like salt, dissolves faster in hot water. 

No, really it is something to do with blood vessels expanding in the heat and exacerbating the effects of POTS (Google: Postural Orthostatic Tachycardia Syndrome).

10. Pace yourself: Hop back into bed after a shower and have a good rest before dressing.

11. Bonus suggestion from my DDad: Install a solar hot water heater.  Thanks DD, that's one way of saving 'energy'. 

I am looking forward to when summer really gets here, I hope to manage a few outings to the local creek where I can float in the cool water for a minute or two.  That's got to boost circulation and help with POTS...I hope.   

I wonder if anyone will notice me having a cheeky wash while I'm down there?


Monday, August 8, 2011

Noise Control

I like the sound of children playing next door after school.  Listening as they laugh and run around.   It makes the world seem like a better place, a place where not everyone is sick and most people are busy with the art of living.

Yes life is good, the birds are chirping the kids are playing and the sun is shining.

Usually this is how I feel, but not today. Today is SUNDAY.

Behind us is a whipper snipper whizzing away and a dog is yelping continuously.  On one side my neighbor is cleaning and listening to doof doof music, their kids bouncing on the squeaky trampoline. 

So are the kids on the other side.


My sense of serenity and calm disappears as fast as any neighborly goodwill.  I try to smile and think of the ‘imagined darling children’.  It doesn’t work.

I can’t block out the noises, I wish that the world was not such a nice place and noise was not allowed.  

I desperately need quiet. 


I start to fantasize about cutting holes in the trampolines, downing power lines and dogs in sacks in rivers. What I need is a stun gun.

Then I remember my earplugs.

 Ahh peace and quiet, maybe I don’t need to take action after all.

An hour later…

The kids next door start crying.  I pull out one ear plug (like the nosey neighbor I am) and listen.  The trampoline has broken and one of them has hurt his leg.

Victory is mine!

I started to feel unsettled.

Did I really do that?

Should I go apologise?

Sunday, August 7, 2011

Six months on the couch...

Today I realised that, shock, horror, gasp, it’s been 6 months since I left work determined to get better and move back in with my parents.

Am I any better?  I don't think so, I certainly can't do more than what I could 6 months ago but I haven't had as many crashes.  I am basically no better or worse.  The glass is half full or half empty depending on my point of view and how I feel.  (some days I feel pretty thirsty!)

Living with symptoms:
I have however, learnt to pace properly, (really got the hang of it this last month) and while I can’t do more than I could 6 months ago, by doing less I have kept most of the nastier symptoms at bay (yes, goodbye to you vertigo, severe nausea, weird heavy/toxic body etc!) which leaves moderate nausea, fatigue and lymph node/throat pains, which are all things I can deal with. 

True Friends:
Another lovely development during this time has been the slow settling into old friendships.   I’ve been away a lot over the years and coming home sick was not easy, I thought ‘Who would want to see me? I’m no fun!’.   Turns out there are some very special people who do still like catching up.  J  I can’t see my friends often but when I do I really cherish and appreciate them.  You do learn the true value of people when your world collapses. (okay so not the Whole world, just My body). 

Help from Unexpected sources:
It blows me away when people I haven’t even met before offer their help.  One friend of a friend sent me a homemade yoga dvd she had done with me/cfs in mind and there are another few ladies who come once a week to practice alternative medicine on me.  (which is so relaxing, I almost always fall into a coma after they leave). 

I wonder if the healthy version of me would ever have been so helpful to someone I hadn't met. 

Also the local uni is doing research on severely affected me/cfs sufferers and visiting 'us' at home to take blood samples and do a survey.  I love knowing that there is a team of people nearby who are working on understanding this disease, I imagine them in white coats peering down microscopes and counting 'wrigglers'.  

So on the whole I am feeling loved and looked after which is a really nice place to be.  Thinking about the people who care about me and who I care about really helps in darker moments.

It’s a pretty bad day today, symptom wise, and I am finding that reading or tv (or blogging :/ ) makes me feel worse so I think I’ll head outside, lay in the sun and listen to an audio book. 

I might be too ill to go anywhere or do anything, but by the end of winter I will have a killer tan!

Here's to the next six months... and learning to be happy with what I have each day.