* 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. :(

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...


  1. I love reading your blogs. They carry such meaning, yet amusing.

  2. Glad you managed an outing Sarah even at the expected cost. What you are able to write so beautifully makes me sure your witty in the moment repartee will come back. I've been meaning to track down Allister Lynch's book and your mention of him has reminded me. Another thing to add to the to do list. Good luck with the hydrotherapy plan. I know that H always feels better in the water...the theory is that the water pressure improves the circulation I believe...but then I'm sure you know all that. : )

  3. Hi Melinda,

    Thanks for your comment, I love love love compliments. (said with cool restraint). xx

  4. Thanks Annie,

    I know, I know, I will have to stop being such a wussy qlder and get my shivery self into the water. Eventually. I'm glad that hydrotherapy it is helping H.

    Did you know Layne Beachly also had cfs, twice, she skated through with it for only 6 months and the second time 12 months...using mostly diet changes and rest to get her back into the clear and winning world titles.

    Whereas Alastair had it for 6? years and managed a return to professional AFL.

    If they can do , we can do it.

  5. No I didn't know about Layne Beachly..or did but had forgotten so thanks for the reminder.
    Oh and I take H to an indoor heated pool and even then she finds it chilly so don't beat yourself up!! And she hasn't chosen to go for a while as getting changed etc is too much effort..you can relate I know.
    She did choose to go shopping with me today and I had to talk her into leaving the shopping centre as got herself into a clothes buying frame of mind! She is in love with Just Jeans because they make kids clothes that actually fit her 167cm/45 kg frame! Anyway I know we overdid it CFS wise but she was having fun...... May you be able to get to a shop..any shop... very soon : )

  6. Haha thanks Annie, I do miss shopping and did go through a phase of ebay browsing..but it's not the same. lol Luckily Mum and I are the same size so moving home meant both our 'wardrobes' doubled. :)

  7. love your style of writing...felt like i was there.

    and a three day crash, interesting. mine is always two days after. the weird and not-so-wonderful world of ME!

  8. Thanks :). Sometimes the crash comes on faster other times on day two I feel really good and think 'yay' and then wake up on the third day grey-faced and ill, if I get past day 3 without a crash I know I've made it. I agree it is definitely weird and not-so-wonderful!