Friday 21 September 2012

First Birthday!

Happy Birthday To Us
Please excuse the slightly length entry - I think I can afford to be a little more verbose than usual to mark a year of blogging.

How It All Began
A year ago this week I was at home, very slowly improving, after nearly 5 weeks in hospital which culminated with a CLIPPERS diagnosis. A combination of high-dose steroids and cabin-fever from being at hospital and home meant I could talk about very little else than CLIPPERS (and boy could I talk). There were also a fair few people who wanted to know what was happening and despite my babbling I was getting bored telling them the same story and answering the same questions. So in an effort to save my marriage (by reducing the babbling burden on my lovely wife) and my sanity (by putting down a definitive account of my illness) LIVINGWITHCLIPPERS was born.

At the time I had no idea if I would persevere with it, not least as the diagnostic uncertainty meant there was a small but finite chance I could be dead by Christmas 2011. However I did gradually get better and the emphasis changed from just focussing on my own problems to providing a digest of what CLIPPERS news I could glean from the web.

Beginnings of a Community
Number of readers of livingwithclippers on a monthly basis
The readership has naturally ebbed and flowed over time and was initially quite high which I attribute to friends and family finding out what the hell had been going on! (When I say "high" I mean up to 20 visits per day - Rupert Murdoch has little competition from me although he has his own problems to deal with.) After Christmas 2011 the visits declined a little but in recent months there has been much more activity. I think there has been a shift towards people who don't know me personally but have some other interest in CLIPPERS for personal (or maybe even professional) reasons. I have also started to receive emails from fellow sufferers (what are we - CLIPPERS?, CLIPPYS?) from Europe, America and Australia.


Whatever their reasons for visiting, the readers of livingwithclippers are a global community as you can see from the map. (No recorded visits from Greenland yet, but I'm working on that.) And let's be quite clear that you have to want to come here. If you just search for CLIPPERS via Google you are highly likely to find other CLIPPERS before you get here: e.g. a popular basketball team, haircare products, boats, tea-bags etc etc Whatever your reasons for visiting, it's seeing the visits rack up week on week which keeps the blog going - there's nothing worse, at least in blog-land, than feeling you're posting straight to a black hole.

The Future
If you're living with CLIPPERS the future is uncertain but there have been some hints in the last year that although the disease is chronic it can often be managed and suppressed, at least in the short-to-medium term. I plan to keep the blog going while there is demand and I have something (hopefully) interesting to say. Maybe a more official support forum will appear at some point but for now you're stuck with my ramblings! But it doesn't all have to come from me. If you have some CLIPPERS news, or a CLIPPERS experience you want to share then send me an email and I'm more than happy to put some guest posts up here. Anyway, thanks for reading and hope to see you next year.
Brecon Beacons, South Wales, Summer 2012 
 
Read other articles in this series at Living With CLIPPERS.

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Monday 17 September 2012

September Sun

A CLIPPER on Holiday
Wales
I've been enjoying the last of the Summer sun in South Wales. The day after we arrived we climbed Corn Du and Pen Y Fan in the Brecon Beacons National Park. I looked at my watch and noticed it was exactly one year to the day since I was discharged from the NHNN with a bag full of pills and a diagnosis of presumptive CLIPPERS. My balance had improved after 5 days of IV steroids but was still not great. I also still had double vision and some strange intermittent jerkiness when walking or talking. A fuller account of those times is here. Now I have a smaller bag of pills and the various symptoms are pretty much resolved. From what I can gather I've had a good result from treatment but this is largely down to the luck of being in the right place at the right time and getting a diagnosis relatively quickly. CLIPPERS is tricky to identify and other things need to be excluded, but equally, it doesn't seem to get better by itself and needs treating. I was definitely in slow decline before and during my time in hospital but the pills are working for now.

CLIPPERS News
The debate about possible mechanisms for CLIPPERS continues. A short response to the paper by Dr Ortega (describing CLIPPERS as a complication of Multiple Sclerosis) has recently appeared. I don't pretend to understand the detail of the argument but more discussion about possible causes can only be a good thing and may eventually lead to firmer diagnostic criterion.

Read other articles in this series at Living With CLIPPERS.

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