* 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. :(

Monday, September 19, 2011

Mum finds A Good Spot.

Mum: So how are your exercises going?

Me: Fine thanks

Mum: You know it’s very important to do leg and core muscle exercises, they get the blood flowing and are good for your POTS.  It increases keeps your leg muscles up to the job of sending blood back up around the body..

Me: I know Mum, (I've googled it to death as well) that’s why I’ve been doing them since I got sick

Mum looks at my stomach suspiciously, my t-shirt has ridden up on one side.

Her eyes glint mischievously.

She lurches towards the exposed skin, reaches out, grabs it and jiggles it energetically.

I yell and fend her off.

Me: What are you doing?

Mum: I’m looking for a good spot to tickle.

I can feel laughter building up inside of me, I look incredulously up at Mum, who is now giggling so much she can’t speak.

I reach for her ticklish spot (about 10cms off her ribs, in midair). 

When we have finally stopped laughing, I lay on the bed clutch my aching stomach and wonder if I still need to do today’s abdominal exercises.

Tuesday, September 13, 2011

Another anti depressant bites the dust

It’s official Edronax also known as Reboxitine didn’t work for me.

It didn’t help with any of the reasons I took it, fatigue, sleep dysfunction, pain or depression. I struggled along with it for two months.  A decent trial period if ever there was one.

That was two months of not sleeping more than 5-6 hrs a night and never longer than 4hrs straight.  I woke up on average three times a night.

So after a decent cooling off period I am on a new pill, Doxepin (Deptran) and I can tell you already I know I’m in love.   I still have trouble getting to sleep but once asleep I stay asleep for at least 8 hours sometimes I even get 10 hours.

I love, love, love you Doxepin, and hope to never tire of your effect on me.

I’m still however on the fence to whether Doxepin helps as an anti-depressant.  I have secondary depression as do most people with M.E. and find that most days I cry a little and seemingly mild questions can set me off. 

Nurse: So are you working or studying?

Me: neither

Nurse: why’s that?

Me: (sob, gulp) umm I can’t. (sob gulp.) I have M.E.

Nurse: oh chronic fatigue

Me: (sob sob...how embarrassing I am crying AGAIN)

So it would be nice if the Doxepin takes the edge off the tears a little.  I am wary though because last time I was on a different tricyclic anti-depressant (amitriptyline) it made my emotions worse if anything.  You can read more about that here.

So this time round I am taking it slowly on a low dose of Doxepin (10mg) and hoping to keep this delightful old friend, sleep, in my life.    

Oh beautiful sleep, how I have missed you.

It might be a bit optimistic to report this already as I am only seven days in, but I think I am slowly improving overall. My heart rate average has dropped and today I wasn’t as light sensitive as ‘normal’.  Keep your fingers crossed for me.

Well that’s the latest news in my drug experimentation.

If you are also experimenting then I wish you the best of luck. 

Disclaimer: My body and body’s chemistry is no doubt different to yours (unless you are my clone and also have acquired M.E. which would make you doubly unlucky) so what works for me may not work for you and what hasn’t worked for me might still work for you.  Talk to your doctor before trying anything new.

Sunday, September 11, 2011

Entering the Twilight Zone:

Does anyone wonder where the vampire myths come from?  Are they really a myth?  How does one become a one?  What are the early warning signs of becoming a vampire?

Well I think I know where the myth comes from.  It comes from ME well not me but M.E./C.F.S

Some of the early warning signs:

unrefreshing sleep
feeling weak and lethargic 
a poisoned blood feeling
otherworldliness (also known as being forgetful and vague)
light sensitivity (unable to tolerate bright sunlight)
new intolerance of garlic and onions.

It’s the recent light sensitivity that tipped me off.  You know something is seriously wrong when a visit to the psychologist is carried out in a dark room and the psychologist has had to download a torch onto her Iphone in order to read her notes. 

In our last session she asked me what I was looking forward to, I was a bit stuck, what with the light sensitivity throwing a spanner in the works.  Then I remembered coffee.  My favourite thing to do when I am feeling up to it, is to lay on a grassy strip on the headland watching the surf while sipping a nice strong coffee with chocolate dusting.  

Lately though I can only manage to get out at dusk and have to take care to turn my face away from the setting sun.  

And yes sometimes there might be something predatory in my look as I check out the surfers.

So if you're a vampire and you're reading this, stop toying with me I am ready to cross over and join the club, this half way crap is not nice.  

p.s. you had better be cute.

Saturday, September 10, 2011

IKEA and Dad:

I thought I’d share another story about my Large Dad.

This one is about the time he sat in the Ikea chair 

This is the chair that is often on display with a robot pushing on the seat repeatedly, a type of in-store stress test.

Mum: I like the look of that do you think it would look good in the study?

Large Dad: What holds the back up? Doesn’t look sturdy to me.

Mum: well the sign says…..

Large Dad: Lets see about that.

Mum: Oh no, don’t

Chair: Creak, Crack Thwack

Mum: oh dear.

Mum’s shoes: clack clack clack clack

(she exits stage left).

Large Dad’s shoes: thud thud thud thud

 (he exits stage right after hoisting himself up and out of the cracked chair)

They then spent the rest of the day trying to locate each other and escape the Ikea maze.

We now know to be suspicious of any stylish looking chairs where Large Dad is concerned.  Thick wood or steel is the safest bet and sometimes if nothing is suitable he will just stand. 

Which he thinks is a great joke.

Friday, September 2, 2011

IV’s, biological waste and adventures with Dad.

I have started getting an IV (Vit C/Magnesium combination) once a week.

A friend of a friend had CFS and thinks that IV's got her over the hump in her recovery.  I can't help but wonder if she had ME? Was she as sick as me?  Did the IV's help or was it just a coincidence that she started to get better.

Whatever, I've decided to give the IV's a go.

Yesterday was my second one and my DarlingDad kindly drove me to the medical centre.

Once there I was directed to the nurses area and able to lay down straight away.

Dad came in a little later after parking the car and hovered by the bed asking if I needed anything.  I realised I had forgotten my water bottle so he went and got me a couple of small plastic cups of water from the cooler.  They were really very tiny, not much bigger than a shot glass and I drank them both in one go and sent him back for more.  

A bit put out by this Dad looked around for a tray or something to carry the cups on, and found one, IN THE BIN.  That is in the nurses discarded equipment bin. It was a blue plastic tray used to hold dressings and then disposed of after each use. 

As he headed for the bin I let out a strangled yelp, no! But he either didn’t hear me or chose not to and left with the tray in hand.

Dad came back a moment later with a big grin, chuffed with himself.  The tray fitted three plastic cups perfectly.  Never mind that it was a drinks tray made out of biological waste.

Then because Dad is a large man and was hovering awkwardly in the hall the nurse politely asked him to have a seat in the one available chair.  But I had put a lot of stuff on that chair, my laptop for listening to audio books, roasted chickpea snacks, eye mask, ear plugs, sik bag and the three cups of water. So to make space, I good-naturedly tucked my feet up and invited Dad to sit on the end of the bed.

He sat. The whole bed jerked and made a gasping noise, my feet went down two inches and my head up two inches. It was weird.  Dad and I looked at each other and giggled unsaid ‘large man’ jokes flashing between us.

Then the nurse brought in a chair for him, so Dad hopped up, the bed made a sighing noise and sprang back to its original position.   He looked at the light plastic chair on offer and gingerly sat down.  All was well.

A stern faced, tall doctor arrived to put in the IV.  I thought she looked rather cranky and wondered why, surely she was making lots of money churning through the IV patients.  She pressed a button with her foot and the bed slowly started to rise.

Bed: jur jur jur jur clonk clonk clonk

Doctor: ohh that didn’t sound good.

Dad: oh? (blue eyes wide and innocent).

Me: How long do you think the IV will take?  (trying very hard not to laugh).

I wonder if I will have the same bed next week.