* 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. :(

Wednesday, May 18, 2011

Telling ME/CFS how it is.

 To me/cfs.

I’ve got you on the back foot,
You better watch out,
I’m wise to your games.
You may not realize it but you are losing your clout.

I know when to lay low and bide my time
I’m quietly battling every day for what is rightfully mine.

It’s a little bit of give and take,
But I’m learning how to play the odds
And a tidy profit I will make.

You are in fighting form today,
Sore glands, legs, throat and fatigue, head my way
That’s okay I can take it on the chin
I’m resting up, I’m gonna throw you into a spin.

I’m on top of your hypoglycemic rants
Sneaky throwing emotional blackmail into the mix
I have added snack food to my bag of tricks.

I can tell when you’re about to shut me down
You pull down the shutters mid party, mid sentence, mid speak
I go quiet, listen to others, to you I turn the other cheek.

And when you ambush me with a sensitive nose
I pull out my eucalyptus rub, and a tiny dab keeps you on your toes.
You like to get my heart racing,
But I have that covered, with salt, meds, diet and pacing.

Your last recourse
Is fatigue of course
But I’m resting that away
The weights I am carrying are not here to stay.

Don’t get me wrong, we have a long way to go
But I won’t live forever with you in tow.
After plenty of rest
You will be kicked out of the nest

I will hunt you down
And run you out of town

And then you will see
What you’ve actually done to me.
I’m going to be strong, wise and proud,
Fun, silly, happy and loud

But be warned I won’t ever forget you
I will always be vigilant incase of another coup

One day we will find the cave you hide in
And you will be eliminated, just like Bin Ladin

As soon as you weaken
You will be beaten.


Monday, May 16, 2011

A couple of days in the life of ME.

I'm lying in the spare room, following the winter sun around the house writing this blog.

It's been a bad couple of days.  On Friday I had a busy day with an MRI in the morning and a psychologist appointment in the afternoon.  I had to fast and not drink any water for 5 hrs before the MRI and then it was delayed for 45 mins.  The old me would have taken this in her stride but the new me had no chance, me/cfs took this as a signal to wreak havoc.  By the time I was called through I was dizzy and having trouble walking and thinking straight.  I think this was because, the lack of fluids affected my othostatic intolerance and the fasting exacerbated my low blood sugars.

I had to concentrate hard on the radiologist's  instructions which were basic

1. Say hello to the microphone when I say hello
2. Hold your breath when I say (me worried... um don't forget to remind me to continue breathing).

He then mentioned the emergency buzzer which you squeeze if you have a problem while in the machine.  Apparently they work on a vaccum system so I helpfully mumbled that I 'know a lot about vaccum systems', he smiled at me so I added 'vaccum flush toilets', he nodded in the way you do to a small child. I tried to clarify with 'on the boat'.  I think at that point he gave up trying to make sense of my foggy comments and just repeated the basic instructions again and again and again.

Afterwards I had lunch and a lay down at home before mum (otherwise known as 131 - dial a taxi) dropped me off to the psychologist appointment.  That went really well, I find it incredibly helpful to talk about the aspects of the illness that I don't want to inflict on my family members.  (as if they wouldn't notice when I morph into irritable sick daughter).

After the session I felt revitalised and even managed a short walk (about 400m) on the beach.  Which felt great at the time but, it put my daily step count over by about 30% and boy did I pay.

 Yesterday I had a crash day, and had to give up on all thinking activities and could only rest by sleeping, reading and dvding.  My body got heavier and heavier throughout the day.

Today has also been a quiet day, with sore glands and throat reminding me that I am still recovering from Friday.  My big achievement has been an epsom salt bath which I managed to enjoy without feeling nauseous.

It's almost 5pm here now and I have done 1037 steps today which gives me plenty left for this evening.  I figure if I can keep it under 2000, I might have a pain free day tomorrow.  (Did you hear that glands...?!  I said pain free!).

Signing out as the sun disappears from my room.

Tuesday, May 10, 2011

Where is the magic wand?

I am still looking for the doctor's magic wand, every time I visit my GP I hope he will choose to bring it out and 'abracadabra' make me well again.

Unfortunately what really happens is a discussion of test results (all negative of course).  At my last appointment he was happy to tell me that I didn't have various unrepeatable/pronounceable illnesses that I've never heard of ... while I am glad that he is being thorough, I can't say I was relieved. I guess I am thoroughly convinced that I have me/cfs and really not worried about them finding another cause for my symptoms.

So the result of my latest appointment is that I am now on Florenif, to try and treat the sinus tachycardia (fast heart rate).   It works by helping you retain salt and fluids in the blood stream and thereby increasing blood pressure. This treatment comes after wearing a holter monitor for 24hrs which showed, what I had found at home, that yes my heart rate hits 160 hb/min just standing up and walking around.

I am exhausted, I feel that I need to talk to a me/cfs expert and let them take over my health treatment plan, but it doesn't really work like that does it.  I have learnt that only you have a vested interest in getting better and have to be responsible for chasing up the right treatment for you.

I still have a few more elimination rounds head of me (eliminating other causes or other complications that might be holding back my recovery), then I will be talking to the local me/cfs expert.  I am looking forward to that step.  I'd like reassurance that I've have followed every possible path which may be contributing to the slow recovery and that I'm doing all the 'right' things.

 ..I wonder if the me/cfs expert has the magic wand?

Or maybe it's the magic words that need revising...?

Sunday, May 1, 2011

Wheelie complicated

The first time it was suggested that I use a wheel chair to get around, I burst into tears.  I am very sick, but I don't look sick, so some silly little proud part of me didn't want to admit it in public and there is nothing quite so obvious as a wheelchair.   It was also incredibly confronting to admit that yes I needed one and actually wouldn't be able to see or do as much if I didn't get one.  At the time it turned out that the tourist attraction we were going to visit didn't have wheel chairs anyway, they did have walk-a-bout seats.  The kind that are a walking stick and fold out to a tripod style seat.  So I had a reprieve and filed the wheel chair worry at the back of my mind out of harms way.

Then last week Mum said, why don't we go shopping and hire one of the centre's free chairs?  B'B'Ba Baaaaa (serious scary music).   Bang all my chair issues came racing back at me, but trying hard to be practical, I swallowed my doubts and put my best foot forward...er wheel.  

It did help that the chair was electric so I wasn't dependant on Mum's driving and it was really comfortable and supportive so I was relaxed sitting on it.  We walked and whizzed around, I managed to get some much needed new shoes and jeans and didn't have to worry about counting steps or looking for benches to rest on or stressing about finding the shortest route around.  Everyone was super nice, which is helpful especially when you don't get out much.  I found that having a visible aid to my illness meant that I felt more comfortable in myself, I wasn't pretending to be okay and toughing it out at the service desk, I was in the chair.

We did have some funny moments, like when I ran into a shoe stand in Myers and shoes flew everywhere, oops the turning circle on the chair was not the best.  Later on Mum suggested I turn around in the lift...which I tried to do at full speed and wedged myself a bit in the corner.  I recommend reversing out of lifts, it's not worth trying to turn around.

At the end of the day I realised I had had a fun time, managed to go shopping and have lunch with no bad effects afterwards. (okay so fingers still crossed on the me/cfs payback).  Being in the chair gave me a taste of the freedom of movement I had forgotten about and looking disabled isn't as bad as I thought it would be.  Everyone's so nice....maybe this is what being a celebrity feels like.

So if you are worried at all by 'the chair dilemma' I thoroughly recommend giving one a road test, who knows you might wheelie wheelie enjoy it.

Sorry I can never resist a a little PUNishment.