My posts last week were the first for nearly 10 months. I have been neglecting this blog and it has been bugging me for sometime that I’ve been doing that. Then last week I decided I needed a break from the facebook groups, I had a hissy fit about the DBEOH phrase being used, and on the spur of the moment left a message that I was taking a break.
I’ve realised that I cannot do both at the same time. Facebook demands quite a bit of attention, it’s like a noisy demanding child, and I don’t mean the people in the groups, but the whole facebook experience. So many reminders and notifications, and it’s all so ‘reactive’, it’s all, ‘now, now, now’. So I’ve come back here, and have a few ideas for regular blogging about HNPP, not a daily diary that I tried once before, just a careful approach to blogging about medical studies about HNPP, and the occasional post about my current state of health.
The Facebook groups are very good mind you, most people there are very thoughtful and caring, and provide a lot of support for one another, the groups are very well managed on the whole, with very few arguments and generally a laissez-faire approach to moderation. The facebook interface is quite good, but lacks a few structured features, like good topic/post headings which can make it quite repetitive when the same topics come up time and time again. It’s also very sequential and timeline driven, which means it gets harder and harder to see older posts. But it does have a large following and that makes it very dynamic and representative of how the condition (HNPP) affects most people.
I, however, can’t do both. So facebook groups will have to take a back seat. I’ll only be using it to keep in touch with family and friends through PMs. I’ll remain a member of the groups but I doubt whether I’ll visit them that often. As I’ve discovered before, it takes a while to get back into the swing of things after a break, and as I want to keep the momentum going here, I’ll not have time to get involved on the groups.
Sadly it seems that the Yahoo group for HNPP is naturally winding down. The Yahoo online interface just cannot compete with facebook, and it’s email system is so riddled with problems from spammers and advertisers that it has become too difficult for most people to use. However, if one can manage to cope with the online interface it is still a very valuable resource for information on life with HNPP, and although it has it’s difficulties of use, it is far easier to search than facebook groups, allowing users to pop in by year or month, and by following threads.
So, I’m neither staying or going, I’m floating free… (ho ho he he ha ha ha ha)