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:
- 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)
- 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
- 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
- Finally 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
However I have found that home working makes this all a lot more bearable for the following reasons:
- It's much easier to take a real break when I get tired, because there are plenty of other things to do
- I am less likely to get drawn into working for too long, or to get sucked into solving problems that are not my responsibility
- I am able to work an extended day, lowering the intensity of my activity
- I don't have to worry about my ability to drive safely
- 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
Finally how to help people understand:
- 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
- It's key to think not in terms of symptoms in their own right but how these symptoms affect your ability to do things
- Its key to think about how you feel, not just about the things that the doctors can measure
- 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
2:26:35 PM 
|
|
