* 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, October 25, 2011

Cockroaches, Dancing and Rituximab

I am so excited right now that if I wasn’t bedbound, I would be bouncing about my room dancing.

Since I am bedbound the best I can do is the occasional flail on my back, ‘the dead roach dance’.  Not to be confused with ‘the live roach dance’ which is only ever done in the presence of an actual live cockroach.

Anyway the reason I am breaking out my happy dance moves, is that there is a brand new reason to hope for people with me/cfs.

A couple of oncologists, Drs. Øystein Fluge and Olav Mella, in Norway discovered a possible treatment for me/cfs.   They were treating someone who suffered from both lymphoma cancer and cfs when they noticed that her cfs symptoms had gone into remission during the treatment.

The drug they used was rituximab (seriously who choses the names for these things), commonly used for lymphoma and rheumatoid arthritis. 

The oncologists, then initiated a clinical trial of rituximab  and to cut a long story short, it worked.  Moderately to well, for 60% of the people in the trial.

If you haven’t read the study results already, then you need to READ THIS. (yes that was a shout).

There are more trials to be done before we know if rituximab really is a safe and effective treatment for me/cfs patients.  

But it's an exciting start and that's something to celebrate.

Sunday, October 23, 2011

Fidgets are good

This afternoon:

Mum: You’re much better today, well relatively

Me: I am now pretty good, but I felt pretty grumpy and sore this morning.  I didn’t think I hid it very well…

Mum: yes well you were grumpy but much more fidgety than normal, you know, you were like moving.


Thursday, October 20, 2011

Rugged Hope on a Bad day.


I wake up at 4am, exhausted.   My mind is whirring, my body feels stretched out and ropey. It's as though my blood has been poisoned.  I want to throw up but can’t, I am sweating and my heart is racing. Every movement makes the nausea worse.

Crap, it’s only been three hours since I feel asleep. I hit play on my ipod and the soothing sounds of relaxation music start up.  One hour and four relaxation sequences later I am still no closer to falling back asleep.  Sometimes it works, sometimes it doesn’t.

The sun is now up and peeks around the edges of my curtains, this soft diffused light hurts my eyes like the bright glare of midday summer sun.  I reach for my sunglasses.

Early morning songbirds are singing outside my window and their sounds pierce and reverberate painfully in my head.  I used to love waking up to these birds.

My heart sinks,  Is it going to be a Bad day?

Mentally I try and tug my heartstrings back up into their usual cheerful position but I suspect that today is one of those days, which are just meant to be endured.

Curling into a ball in bed, I try not to think of how far away I am from being a normal person.  My eyes prickle.

I pull my eyemask down, put in my bright orange ear plugs with my headphones on top and I tuck my feet up against the hot water bottle. 

I try not to think, I don’t want to hear my thoughts. 

Instead I press play, listen and start to drift away as the words of an audio book gently distract me.  I do my best to imagine the scenes described and feel myself getting lost in the story, leaving my sad and sorry body far behind.

That's my day.  It’s been like this for months and will be like this for many months more which may, I understand, stretch into years.

Last thing at night I smile and tell myself, ‘It’s okay hun tomorrow will be a little better’

And I believe it. 

Funny thing, this hope.  

Saturday, October 15, 2011

Large Dad and the Kayak

Last week Large Dad and Mum wandered into Anaconda to look at kayaks. 

Mum:  What about this blue one, it looks about right.

Large Dad: Yeah that’s what I want but maybe a bit bigger, this one is a little small.

Spotty Adolescent Sales Assistant: They don’t come in any size up. I think you will find it’s bigger than it looks, one size fits all.

Large Dad: the opening looks a bit tight to me.

S.A.Sales.Assistant: They are meant to be snug why don’t you hop in and have a go.

Large Dad: No, I don’t think so.

S.A.S.A.:  I’m sure you will be fine, go on, give it a go (maybe he works on commission?)

Large Dad: righty oh

He squats down and slides awkwardly into the opening. 

It IS a tight fit. The kayak seems to open up to accommodate his bulk as his hands press down on the edges.

Then he is in position he leans back and releases his grip.

The kayak sighs and closes tightly around his tummy and thighs.  Eyes bulging he looks up at Mum.

Mum is backing away, her eyes are watering and her shoulders are quivering.

Large Dad: I’m STUCK

Spotty Adolescent Sales Assistant: Stay right here, I’ll go and get some help.

Large Dad: sure. (rolls eyes)

Loud Speaker: We need all available floor staff to assist in the watersports department.  All available floor staff to the water sports department thank you.

Four athletic sporty men come to help Large Dad who is sitting on the floor with the bright blue kayak tight around his waist.  There is a big grin on his face, he is happy to have proven his point.

Large Dad: I told the boy that it was too small for me, but he insisted. 

They each try pulling him different ways to no avail.  Large Dad tries to assist as much as possible but he can’t move much. 

They discuss calling the fire brigade but no one wants to cut up the lovely bright blue kayak.

Then Large Dad has a brainwave.  “lubricant”

Green washing detergent is squirted around the top of the opening and Dad’s stomach.

Two men hold the Kayak down and wiggle it, while another two grab Large Dad around the torso and pull. 


Inch by inch the kayak relinquishes its grip.


Suddenly he is free.

Everyone smiles, hands are shaken and Large Dad goes looking for Mum.

He finds her in the carpark , she looks at him and doubles over next to the car, her eyes are streaming, her shoulders shaking, she can hardly breath. 

Mum: You know your daughter has a blog ?

Thursday, October 6, 2011

An Outing part 2....what's wrong with my head.

We head for the coffee stop, parking in our second ever disability space.  My brother heads in to get the coffees.  I lay back, I can feel exhaustion creeping over me, I am getting heavier but I've had an 'outing'.  I smile and force myself to keep my eyes open, people watching.

It’s Sunday afternoon and the foreshore is packed.  Some girls about my age jog past, their long pony tails swishing rhythmically behind them and there is a quite sexy looking guy with a deep tan and sun bleached white-blonde hair rinsing off under the shower.  Three very cool retro bikes with three very cool retro girls glide by.   Skirts, bikes, no helmets and big square sunglasses, they look to me like the very definition of ‘carefree’.  (although I am irritated by the 'no helmets' I can't help it, I'm that type)

 A dark haired guy in a lime green shirt passes in front of the car, hesitates and goes to the crossing.

Oh Oh, I know him.  I wonder if he has seen me, I pause considering if I have enough energy left to say hello and then decide he probably did.

‘Hey George!’ I yell out.  (I have one of those loud voices that make people cringe when I yell)

George spins around confused and spots me, a girl in a cap, sunglasses, tank top swimming costume and longish boardies.  Mentally I congratulate myself for choosing a tank top rather than a skimpy bikini and at the same time I remember that I haven't managed either a swim or a shower  today or yesterday. Oh well.

George is an old friend from working on boats overseas.  In an instant my mind flashes images of us and other friends catching up in different cities around the world.  Swimming at a beach in Greece with a glass of wine in one hand, walking through the old city streets of Palma de Mallorca and the many Sunday afternoons mojito sessions with friends at a favourite beach front restaurant. 

I turn and sit in the car, I can’t stand for long.  We chat awkwardly for a bit.  I can feel my brain slowing down, I’m exhausted from the outing at the beach. I can barely form a coherent comment about the weather.

George: ‘You don’t have to salute me, you know’ his grin is mischievous.

Confused I wonder what he is talking about, then I realise, my hand has snuck up to my eyes and is blocking the glare off the water.  It’s 5.15pm, the sun is behind me and I am wearing sunglasses it's actually pretty dark.

Me: ‘oh it’s light sensitivity, I didn’t realise I was doing it’

I mumble through 10 minutes of conversation.  I'm vaguely aware that I’ve missed a few obvious jokes somewhere along the line. 

We organize to catch up again in a few weeks.  I don't know if I will be well enough.  I am really struggling to keep the conversation going, it feels like the clogs (you know, 'the clever clogs') in my brain have ground to a halt and I can barely follow what's going on.

I hope and pray that I haven’t lost the ability to banter.  I want to sound like myself, my old self.  The self that used to have to force herself to be quiet and count to 60 in order to give others a chance to talk. 

My words have started to come out wrong, I'm mixing them up, instead of a vocabulary I seem to have a lucky dip.  This was initially funny, but now is mostly depressing and dare I admit it, a bit worrying. 

I’m too tired to wonder what all this means.  I guess remotely at some level I know my brain doesn’t work the way it used to and that scares me but I’m too tired to process that at the moment.

Zzz zzz zz


Three days later, like clockwork, on the following Wednesday, I had the feared post ‘outing’ crash.  Grey faced, with a racing heartbeat, I had a nasty bedbound seriously-ill-yucky time which (praise be to the capricious gods of me/cfs) only really lasted one and a half days.

So I don't end on too negative a note, I'd like to quickly mention that I've now had a couple of days with  a couple of hours of 'myself at full speed'.  Watch out...

Wednesday, October 5, 2011

An outing and it’s not to the doctor.

I wrote this about my 'outing' on a  Sunday  (2 Sundays ago) ... Part one


I’m going to the beach, my heart singing I wiggle into my swimming suit and board shorts.  It’s hot and muggy, I have been imagining the sliding into the water all day. 

I move slowly around my room determined to keep my heart rate down. I cover my greasy unwashed hair with a cap, fetch my sunglasses from under the bed, grab my sick bag complete with brand new disability parking permit and head slowly for the car.

My brother grins at me as I recline the car seat back and arrange my black and white polka dotted neck cushion.  My heart rate monitor declares my pulse to be 123hb.  Not bad.

‘I should have reclined the seat for you’

I roll my eyes and laugh, ‘It’s a bit ridiculous isn’t it, really, don’t worry this I can do.’

We pull out of the driveway and I pull my eye mask down, willing my body to relax, my heart rate to stay low and my nausea to stay away. 

Five minutes later the car comes to a stop.  (yes I know, I live thaat close to the beach).   The water beckons a mere 20m away. I stick the disabled sign on the windscreen and we head slowly down to the sand. 

I wonder what people might think if they see the us walking, me without even a limp, from the disabled car park to the water’s edge.  Mentally I dare someone to say something, but no one is looking let alone likely to comment.

I lay on my towel, it’s 4.30 in the afternoon the sun is enveloped in a red haze to the west, grass fires I suppose.  I can feel a cool breeze.

Children run squealing from their parents to the water and back again like little duracel batteries they never seem to stop.

The sand is cool to touch.  I watch a group of teenage boys crossing the estuary. 

I shiver, goosebumps prickle my skin.

Me: ‘maybe it’s too late for swimming’

Brother: ‘What about your ‘hydrotherapy’

Me: ‘it’s too cold, look even the kiwi’s are hoping out’ (a group of chubby Maori boys are making a hasty retreat from the water)

Brother: ‘I thought you said you wanted to try ice baths and cold water was a good start?’

I recently listened to the wonderfully positive podcast (once you get past the boring sports commentary) in which  Alastair Lynch and Duncan Armstrong both mention ice baths and what helped them recover from me/cfs.  Ever since I have been toying with the idea of hydrotherapy and ice baths.  

I look dubiously at the water and back at my brother, who is trying hard not to grin, he knows I am not going to swim.

Me: ‘How bout I buy us both a takeaway coffee instead?’

Brother: ‘sure, sounds good.’

I experience a pang as we head back to the car.  This is my life, this is the new me.

How strange.