AOSD and work

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:

1. Although I suffer from Joint, Muscle and Tendon pain these in themselves I can put up with and generally work through provided my arms and hands are not too bad, (as I spend a lot of time typing) and I take a break every hour.
2. Every couple of days I will get extreme pain, often very localised, for example in my Jaw, Knee, Elbow, Finger etc. Normal pain killers have no effect.  It’s very difficult to find work to do when in this sort of pain. I have found that only things that are very easy, or very absorbing (but not complex) work because they are distracting.  In my job I try to watch recordings of technical conferences during these periods.
3. The main things that affect my ability to work are, the fatigue, difficulty concentrating and mental fog that seriously affects my mental acuity.  These things don’t stop me dead, for example I am still able to read, have a discussion on the phone, type a couple of emails, but they limit the amount of time I can spend working, the intensity and the quality of my work.  I tend to find the error rate in my typing increases 10 fold, that I struggle to find the rights words, or make difficult decisions.  These symptoms rule out most of my work activities.
4. An associated problem is the depression, the combination of the pain, the mental affects, the lack of sleep, the fevers, the itching etc don’t make me that positive and the slightest issues seem to make me anxious and frustrated.  When I feel like this I have to avoid certain situations, such as document reviews where the conclusions impact on people firmly held beliefs, as these discussions quickly degrade into arguments. 
5. I have noticed that hard work tends to increase the likelihood of a flare and affects the duration of a flare, so my Doctor tends to encourage me to rest
6. I have pretty reliable evidence now that whenever I get an infection it triggers a flare, and this tends to wipe me out for about a week

However I have found that home working combined with a carefully designed work mix makes this all a lot more bearable for the following reasons:

1. It’s much easier to take a real break when I get tired, because there are plenty of other things to do at home
2. I am less likely to get drawn into working for too long, or to get sucked into solving problems that are not my responsibility
3. I am able to work an extended day, lowering the intensity of my activity
4. I don’t have to worry about my ability to drive safely
5. I have more flexibility in what I do at particular times, for example if my arms are hurting I can sit in a comfy chair and do some reading, or go for a walk or a swim

I am trying to develop a mix of work that is as flexible as my condition is variable, my ideal work mix goes something like this:

1. Work that does not have short term deliverables
2. Work that does not involve me being available at specific times during the day
3. A mix of work in the following proportions, 2 hours of research, 2 hours working on long term deliverables, 3.5 hours medium term project deliverables.
4. Even on bad days I can normally manage the 2 hours of research, on better days I try to work on the medium term project deliverables and on the best days I also work on the long term deliverables.
5. My current experience is that I have gradually increased my work from 3-4 hours average to 5-6 hours average.  Whenever I have got beyond 6 I have had some sort of relapse for a whole variety of reasons, which may not be work related for example an infection or a dosage change.
6. I have also noticed (not suprisingly) that the worse I feel the more research I do and the less I work on deliverables. 
7. On the plus side I have found that my grasp of concepts and my intuition are still very strong (probably stronger than they were before) as is my ability to review and help bring shape and structure to work.

Finally how to help people understand:

1. I have kept extensive records, which have helped me understand much better!  In particular I found keeping records of things like fatigue and mental acuity particularly useful
2. It’s key to think not in terms of symptoms in their own right but how these symptoms affect your ability to do things
3. Its key to think about how you feel, not just about the things that the doctors can measure
4. I have found it very difficult sometimes to understand why I struggle to get beyond 6 hours average work.  What seems to happen is that hours just drift by in a mental fog.  So I might sit at my computer for more than 6 hours but more than 6 hours of work does not get done.  I often find for example that I have sat for half an hour reading a report and can not remember what I have read and have to go back and start again (when this happens I count that as 1/2 an hours work not an hour).
5. There is very little available to help Still’s patients but one of the most useful things I have found is the wealth of material to help sufferers of Fibromyalgia.  This is particularly helpful because this disease has similar pain, fatigue and mental affects to AOSD so its impact on work is similar.  Search the web and you will find loads of advice on disability, coping with fatigue etc.  You can start here:

http://www.fmnetnews.com/pages/Disability.htm

http://fmaware.org/patient/disability.htm

http://www.nfra.net/fibromyalgia_disability.htm