Wednesday 20 November 2013

Symptoms update - illness & tiredness

Ok. I posted a few months ago that I wondered if I was starting to get more signs of HSP. This has been a little bit more and more since then. At the weekend I was sick - probably a food bug, but that's not important. My youngest son was sick Fri/Sat, with my eldest son and me both being sick Sun night, presumably the same thing. Needless to say it was quite a sleepless night on Sunday. I could really tell that I was exhausted Monday morning, and it felt so difficult even to stand up. I felt like I had no energy and I had to really think about trying to stand up.

Some time ago I had observed about things being worse when I was tired, and I suspect that this combined with sickness just emphasised the effect. Monday night was a good nights sleep, and I was back to normal today.

I read, via twitter, the spoon theory a few months ago, and I saw that this seemed a very good way of explaining a long term chronic health condition. I have a feeling that HSP is going to need this explanation. If you've not seen the theory before have a read: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ 

This is probably also the place to note that in addition to noting some 'issues' with my legs (which I'm perfectly happy to talk about) I've also been spotting some urinary and bowel issues (which I'm not so comfortable sharing). I've been having some urgency 'issues' recently with some 'events' being a little too close for comfort. For completeness, I'll also note that I've spotted at some time most of the effects noted in my post about a year ago. It's a good job I don't need to worry about how many times I flush!

Wednesday 6 November 2013

Overall Update

I realised the other week that it had been a while since I updated the index for this blog, so I've added the last 12 months of posts to the index such that it is now up to date. Perhaps this becomes an annual job as its about a year since I put the index up in the first place.

I've also added some technology to the blog. I was looking at someone elses Blogger Blog and they had various features that I wanted. I had a bit of an explore and managed to find a search feature, and e-mail/RSS subscriptions. So. those are to the left of this and you are welcome to use them if that helps you keep in touch.

In recent correspondence I've also become aware of three more HSP groups - Finland: http://www.ms-liitto.fi/hsp, Austria: http://www.salzburg.at/miniweb/sspshg/ and Europe: https://sites.google.com/site/eurohsp/home. I wonder if there are any more?

I've also been looking into the SPATAX network: http://spatax.wordpress.com/ and observing that many of the researchers here are those with the most papers in my trawl of papers.

Finally, I've over 100 completed reponses to my survey so far, so many thanks to those that have completed it. I'm still trying to promote this around HSP groups, so I dont think I'll look at results until later in the year.