I have recently been reading about Dave Pollard’s very focused attempts at using self experimentation to challenge his Colitis, so I thought it was probably time to provide an update on my progress challenging Arthritis. First off, my form of Arthritis is a rare one, Adult Onset Stills Disease, which...
As readers of my blog know I suffer from Adult Onset Stills, a rare disease that affects 1 in about 200,000 people. Since my last major flare about 13 months ago a combination of Steroids and Immune System Suppresents have managed to get the primary inflammation under control leaving me with chronic pain and fatigue which varies from day to day. I cope pretty well with this by working from home etc, and its all well documented in this blog.
Right now I just slowly turning the corner after a couple of bad months, but the recovery is very slow and is going in fits and starts.
The graph shows the daily symptom levels for the last 6 months. However progress has been made as follows:
I have recently restarted swimming. It’s a great way to keep fit and it really helps ease my aching muscles and joints, but it’s really boring! I recently found the solution though. I purchased a waterproof MP3 player, that looks like this:
and it works by bone conduction of sound. When the device is placed on any bones of the skull (i.e. the cheek bones or the mastoid tip) it leads to vibration of the fluid in the inner ear. Thus I can enjoy clarity of sound with the SwiMP3 device that was never before possible. Jon mentions it in his blog as well.
At first I thought I would use it mainly for music, but then I discovered the IT Conversations web site, which is chock full of really interesting downloadable talks, many of which are so relevant to my job that I can make a valid claim to be doing research while I am swimming!
I found a slight glitch in that there is no way to bookmark the point you get upto in a talk and restart at that point the next day, so for longer mp3’s I have had to split them into 20 – 30 …
Summary Status Description Efficacy Working from home Approved and implemented Allows me to work when I would otherwise be too ill to travel. Allows me to spread the workload throughout the day reducing intensity. Reduces exposure to infectious agents. Allows more frequent and effective breaks. Reduces stress Allows distraction and...
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:
I have always loved swimming, and since I have started to suffer with AOSD, it has become all the more important to me. Right now I am not able to swim at all, but hopefully within a few days I will be swimming ten lengths, within couple of weeks I may get up...
Well the reason for my relapse again last week appears to be that I have a throat infection. White spots on my Tonsills and a sore throat and mild temperature being the evidence. As always whenever I get an infection the Stills symptoms come shooting back, but this time I...