gwyn_bywyd: Photo of a yellow orchid. (Default)
[personal profile] gwyn_bywyd
I think I'm fighting off a cold. My family has a children's picture book called "I don't feel well" that is read to the person who is not feeling well. Bear in mind the youngest in the family (apart from "furry grand-children" cats and a ferret) just turned 21! My mum tracked down copies via ebay for all of us, so now one can follow along as it is read over the phone. It is enormously comforting in a peculiar way and makes me reflect on the value of tradition, communal as well as just family ones.
Had a conversation (via typing) with one of my very best friends ... who was very surprised to learn people die from cfs. I've been sick 4 1/2 years now, and it seems strange to be having this conversation, especially since one of my biggest fears during the last 12 months has been the catch 22 of if I really need to be admitted to hospital I will be (by definition) too ill to get myself there, and probably too ill to be able to communicate this to anyone and worrying at what point I should pre-emptively make that call. Just goes to show how little is generally known about what having cfs really means to a person. As I was saying to someone today, it says a lot about how the unknown nature of the illness affects me that I cried tears of relief on reading the article that suggested that cfs might be a retrovirus (if this doesn't mean much to you - the reason AIDS is so hard to treat is because it is a retrovirus.) At this stage I wouldn't have the first qualm about offering myself as a test subject in trials of antiretrovirals, unfortunately I'm too far away from major research centres.
But there is some light at the end of the tunnel for me at the moment, I see my family the day after tomorrow! I just can't wait!

(no subject)

Date: 2010-03-03 10:51 am (UTC)
From: [personal profile] puzzlement
Purely as a practical thing, can you have some kind of check in re your health? As in, have someone you're supposed to contact each day (or similar) and if you don't talk to them they know that you need help?

In other news, enjoy your family visit!

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gwyn_bywyd: Photo of a yellow orchid. (Default)
bywyd

May 2010

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