6 October 2009


my dream, when i get better i want to walk. as far as possible.

when i was well i did part of the vanguard way. its a footpath from east croydon station to newhaven (i think it was newhaven, it was the south coast though). i loved walking through the woods, seeing different seasons, smelling different plants, woods. the pacing of my feet, the feeling i got, my red faced glee at arriving at the next sign with a little arrow, knowing i was on the right track. i never managed to do the whole trek, it would of taken four or five days. still was anxious back then, so i coped with an hour or two at a time.

thats what i miss the most. my body has given up on me. strangly i want to fight my body, more than my mind. i almost gave into my minds thoughts, yet when my body faltered i got more angry, it shouldnt give up on me. how dare it.

at the moment im dealing with it by blocking it out. thats the only way forward for me. not healthy. if the docs say this is it, i must not believe them, i cant believe them. we shall see a in a few more appointments time.

i have the brain scan on saturday (strange day to have an appointment), two scans in one day. im kind of hoping they are only going to put my head into the scanner, the thought of my body being trapped, in that claustrophobic hole gives be the jitters. fingers crossed again.


Nikki said...


I just wanted to say good luck for the scan's :)

If its an mri(?) perhaps you could ask for a sedative to make things a little more bearable.. I think they let you take a cd too, they can help if you're anxious I'm sure. You'll be fine though :)

Michelle Roger said...

Ick MRI been there. I took a CD but my doc had forgotten about the sedation (I'm claustrophobic) script so I had to just try not to hyperventilate. They did let my hubby sit in to hold my leg though LOL! I did make it through and you will to. My motivation was if you move they can't use the scan and you have to do it again, no way i was going back. Hope you get some answers.

Glad my ramblings made you feel normal. Many of us have been through the wringer with this damn illness thingy.

I like you blog. I had those socks and shoes as a kid. It must have been an international fashion trend :)

Anonymous said...

Hi Alice,

I know what you mean about the walks. In my own case although I am getting out more I long for the day when I am doing it without having to constantly look over my shoulder to see how far from home I am.

Good luck with the scans. You've certaily been back and forth there more than I guess you would like so I hope it all leads to being worthwhile in the end, which I am sure it will be.

All the best


alice said...

hi nikki

thanks for the luck i need it. it sure is an mri scan. still hoping it will just be the high part of my body, i know i will be able to tolerate that. x


hi michelle

im glad you were ok in the scan. im trying not to think of it till the day. i mangaged the autonomic function test, which wasnt pleasant, so hopefully i will be able to complete this test. fingers crossed. its always handy listening to people that have had the same test, somewhat comforting.

your blog made me laugh. i think thats the thing to do with this odd condition. xxx


hi nechtan

im hoping that they will indeed soon be able to give me a firm diagnoses with all these tests. they know something secondary is going on, or should that be primary, as the pots, is secondary. fuzzy, tired head today. thanks.x