Steve's Seaside Life

Category: Living Well

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How Still’s has affected my life – the answer suprised me!

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 …

All Posts / Chronic Illness / Living Well

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)

  2. The main things that affect …

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My typical working day

  1. I get up at about 7:30 and have breakfast

  2. Then before 8:00 I start working,  normally I try and get some good quality work done for about 2 1/2 hours

  3. By 10:30 I am ready for a break, so at that point I print off some reading material or download it to my tablet

  4. I then go for a walk and usually end up at one of my nearby beachside cafes, where I settle down for lunch, and review whatever paperwork I have taken with me, and then wander home for about 12:00 – 12:30

  5. I then try and get another 2 1/2 hours work in until about 2:30

  6. Then I go for another walk, usually to my local health club and spend about 30 minutes swimming, probably spend 15-20 minutes reading and then head back home, usually arriving at about 4:00.

  7. I try to get another hours work done then and then have tea with my wife and four kids

  8. Depending on kids activities then I will generally get another hours work done sometime before bed.