27 February 2004

Visit from the occupational therapist I had my first visit from an occupational therapist today.  I have been referred to her to assess the type of work I do and how that can best be adjusted to make it easier for me to cope.  She arrived 2 hours late and stayed for 4 hours.  The visit itself tired me out but it was very useful.  She helped me to see my condition in terms of its affect on my work, and the affect my work has on the condition.  The process she went through was enlightening, and should be useful.  Not suprisingly she has not worked with anyone with AOSD before but she says that the symptoms and affect on work are simillar to those that people suffering from chronic fatigue go through. She wants me to start an 8 week controlled trial, where I will work from home on well bounded tasks and keep lots of records.  For the first 4 weeks she wants me to increase from 20 hours a week to 37.5, my normal hours in gradual steps. All in all 4 hours well spent. 10:50:02 PM      comment [] The importance of keeping records One of the things that has really helped me with AOSD s keeping my own records.  Its a very difficult thing to diagnose, so the doctors need all of the help they can get. First lets consider the major symptoms: A rash.  Take photo's, normally the rash doesn't itch and its clearer after a hot bath. A spiking temperature.  Keep a log of your temperature, if you have Still's it will alternate between well above normal and a little below, at least once a day and sometimes twice.  I found that this pattern was not too evident when I was in in hospital because they gave me asprin all through the day which masked the effect.  In my case its only when I left hospital and stopped the asprin that all became clear. It involves joints and muscules and it moves around.  Keep a pain chart, I had a daily chart that recorded which joints and muscles hurt and how much.  I colour coded it and produced graphs.  When my doctor looked at the pain chart and the temperature chart he said "Ah Ha AOSD".  In my case the chart is a wild pattern, with different muscles and joints showing up in different colours most days.  However I can see that when I am getting close to a flare, its my fingers that are the early warning! It maybe induced by Stress,  Keep a stress chart,  I did this as soon as I went back to work.  When I comparsed the stress and pain chart they were almost the same.  When I showed it to HR at work it was much easier to have a discussion about working from home and changing the type of work I do. So in summary I have no majic cure for AOSD, but if you want a better deal from your doctors and from your employer, I think it pasy to keep your own records! 9:56:56 AM      comment [] Me and AOSD Approximately 4 years ago I was working in London, and had a sore throat and was noticing some annoying muscle stiffness and pain, I boarded the train to return to Preston and on arrival found I could no longer stand.  By the next morning I was unable to get out of bed due to extreme muscle and joint pain.  The condition was not diagnosed at this time and no treatments were effective, although home care was possible.  After about 6 weeks I was able to return to work.  Very minor reoccurrence of symptoms were noticed occasionally, but they had no affect on my lifecycle or ability to work.    After about 18 months I had another flare-up, resulting in approximately 4 weeks off work, again with home care being given.  I returned to work however this time I did notice some muscle pain every week or so, however this was never correlated with stress or workload, and had no affect on my lifecycle or ability to work.    Last year I had a major flare-up, causing almost complete disability, i.e. unable to move unaided, feed myself etc.  I was admitted to hospital for care and whilst there had extensive tests for 2 weeks, no diagnosis was made but my condition stabilised sufficiently to allow me to return home.  Within days the condition flared again and I was re-admitted to hospital for further care.  During this period as a result of records I had kept of his pattern of pain and temperature the diagnosis of Still’s was made with confidence.   A treatment plan was created and within a week I was able to leave hospital and 4 weeks later was able to return to work. Following my return to work around April last year I have never been free of pain.  I kept daily records of pain and stress levels.  Even whilst continuing to take regular Steroids to suppress the symptoms I had one flare, and since coming off steroids two flares, the last one in January requiring re-establishment of the treatment and two weeks off work.   I approached my company about changing to a less stressful job and working from home, they have agreed in principle, so I am at home right now and decided to start this log. 9:45:04 AM      comment [] Ok then what is AOSD? The link takes you to the AOSD web site.  Its a rare disease thats a bit like Arthritis, I started with it about 4 years ago and its been getting worse since then.  Here's a little bit of background: AOSD is an inflammatory condition that attacks internal organs, joints and other parts of the body. It can appear and disappear suddenly. In very severe cases, AOSD becomes chronic and extremely debilitating, causing terrible pain and stiffness. After many years, the disease cripples vital organs such as the heart and lungs. Thats the bad news, I will tell you a bit about my experiences with AOSD soon, and then things will get a lot more positive! 9:39:00 AM      comment [] Adult Onset Still Disease I started this weblog, because I have AOSD.  Most people won't know what it is because less than 1 in 100,000 people have it.  But its important because its this disease thats resulted in me working from home, using a Tablet PC and changing my life in many ways.  So I thought I would write about the experience, for other people who like me may be going through a life change, or suffering, working from home, or in fact using a Tablet.  Finally as I am involved quite heavily in the IT industry I might have the odd useful observation about that as well. 9:31:11 AM      comment []

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