I asked my specialist this question a few months ago and he looked back at me like a rabbit trapped in the headlights, “I just match symptoms to drugs” he said, useless! I wanted to know what was happening to cause the brain fog, why I suddenly needed 2 hours...
In my reading I often come across the fact that hunter gatherer populations didn’t and still don’t suffer from many of the chronic health problems that we suffer from in the west. One of these conditions (or families of conditions) is Rheumatoid Arthritis, which Adult Onset Still’s Disease is part...
Although for short periods of time I can be content with just the pleasures of life, I’ve found that the only sustainable ‘good life’ comes from having a purpose as well. That purpose is ideally one that’s within my control as work as a source of purpose has become fickle...
In Buddhist philosophy one of the most important life ‘skills’ to develop is to loosen ones attachments. I’m not a Buddhist, but as an approach to life it has a lot to commend it but I’ve always struggled with this lack of attachment idea. It’s always seemed to me that...
12 Months ago I embarked on a fairly radical restructuring of my work and home life, in order to allow me to focus on my health by improving my mastery over my mind and body. A year ago you might say that I mostly worked until I dropped, where dropping...
I thought I would take the opportunity to look back on my year (and a funny old year it’s been) before looking forward to the new year in a few days. It’s nice and quiet in the house and after such a lovely time (Christmas Morning) it’s left me in an appropriately reflective mood, so here goes:
Health
What a year it’s been, around the middle of January 2004 I started with another flare of Adult Onset Still’s Disease, which had been in remission for about 8 months. This time no remission has occurred and one year on I am still suffering. However I have come to terms with it well and am approaching the point after many experiments (often painful) and lots of record keeping, research and analysis I think I am on the brink of getting things under control. …
When I provided my last update I had just gone back onto 10mg of Steroids and was feeling quite a bit better. It didn’t last very long and have been having a pertty wild time over the last month as my symptoms have been so variable. I have also noticed that more “bits of me” are in pain, now added to the long list are Toes, Back, Chest, Jaw. I have also been working pretty hard trying to get a project finished which turned out pretty well by all accounts so that was quite encouraging, but it did me in so I took last week off as a holiday to recover, but ended up spending most of the time writing and on the phone trying to sort out extended sick pay, dispability living allowance and grant assistance for a special seat and keyboard. I also took the opportunity to write up some of the most frequently requested information, so I don’t have to keep writing it out, or more likely forgetting important information when people ask.
I have attached the files for anyone who is interested in the drugs and non-drug treatments I have been using.
I visitied my specialist last week and he asked me how Still’s affected me, focussing on issues like could I dress myself, cook etc. I am fortunate that Steroids seems to keep the major inflamatory affects of Stills reasonably under control so I am able to lead a fairly normal life, when I don’t feel too good I just don’t do certain things, or get one of my 4 girls or my wife to help out.
After I had left though I got to thininking how I have modified my life to work around Still’s and I realised what a major effect it has had, it’s just that I have adjusted in such a way that it does not seem that I have given too much up overall. In fact taken as a whole I think I am happier post Still’s, but that’s probably as much to do with my positive outlook on life as anything else. These are some of the changes:
1. I cann’t do all sorts of things I used to do:
a. No DIY
b. No climbing
c. No weight training
d. No hiking
e. No heavy …
One of the responses to my post on the Stills Message Board was about AOSD and Work, and the difficulty some people have with communicating with their employers about the disease, and in fact with some health industry workers. I thought this was interesting because it’s similar to my experience so I thought I would write a bit about it.
First off you need to be able to explain why Still’s affects your ability to work. At first I just tried to describe the pain, but in my case the pain is really not that extreme and others do manage to work with that level of pain. I am a pretty motivated guy normally so that got me thinking a bit more about why I struggle to work when I am in a flare and why even when things have stabilized I don’t have the stamina I used to have. This is what I came up with:
Well it’s that time again. A quick look back at the last month and how I have coped and what I have learned about AOSD. Here is a summary chart showing cumulative symptoms:
