* 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, 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.


  1. Wow, you've really had a busy couple of days!! Not surprising that you crashed, huh?

    Interesting that you track steps taken as a way to monitor your activity level. Have you ever tried monitoring your heart rate? If you stay below your anaerobic threshold, it really works well to avoid crashes. Here's a blog post about it:


    It has really helped me.

    Rest up - hope you recover soon!


  2. Hi Sue,
    Thanks for your comment. I have read your blog on heart rate and post exertional crashes and it inspired me to get a heart rate monitor. I found my heart rate hit 150/160b/m, I now am on Florinef, increased salt and fluids, raised bed head and leg and abdominal strengthening pilates.

    It was a very helpful blog and has made a huge difference. Unfortunately my heart rate monitor died (still trying to find the receipt) but I'll sort that out and get back on track with the monitoring soon.

    I really enjoy your blogs, hope you are feeling better soon.

    Cheers Kiwikchat