My Third Blog Post: Me and AOSD

This is the third in my series of posts looking back on my first 10 blog posts.

This post is actually quite fascinating (to me) as it describes how my relationship with Still’s started through the earliest flares, I’d forgotten some of the details.  It describes the defining moment in my life when I decided that I couldn’t continue to do the job that I loved and had to step down and do something different.  Here goes:

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 lifestyle 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 the 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.

This blog post arose directly as a result of this decision, the blog was originally called ‘Adventures In Home Working’.  While the changes that I made, working from home, not managing people, not leading projects, definitely eased my stress levels and reduced the impact of my unpredictability on my employer, they also made it more difficult for me personally.  Working from home I was more isolated and had less support from my peers, not managing people meant I didn’t have enough time or resources to implement many of my ideas and not leading projects reduced the impact I was able to make and hence reduced the thrill that comes from making progress. 

I often wonder whether I would have been happier at work if I’d been able to keep managing a team, but I don’t regret the change as working from home definitely improved my family life and made it easier to focus on my long term health.

I’m writing this post in Caffe Nero St Annes as usual, I’m still suffering badly from the burning, itchy rash that covers most of my legs, I’ve only had a couple of hours sleep. Still, I’m hopeful it will clear within a week so that I can enjoy a weeks break in Filey (pictured) with Debbie.