Strangely Annoying

Frustrating, annoying, soul destroying, confusing ... just a few of the terms I have used to describe some of the most annoying consequences of Living with Lupus or RA.

Being inactive is very difficult for me. 

It's OK for a while - you can imagine you are on holiday, retreat or something. That can only work for a while. While, not being able to do the things that felt an intrinsic part of the ego lasted a lifetime.

When I got to the stage of not being able to do everything the job required I moved to retire. That was worse, not only couldn't I do those things I loved I didn't have anything specific to do every day. Being inactive was very difficult.

Gradually, I worked out how to survive. 

Lady Luck wasn't going to have that. Every time I  felt life was falling into a nice rhythm, the symptoms escalated and my life deteriorated. Once, twice, 3 times and more, until I was really imprisoned on my verandah. Only venturing down those dammed steps once or twice a week. 

If it had been a holiday, I could have stayed on the verandah, read, drawn, googled, and surfed a good part of the day away quite happily. This, not being a holiday, became something to be beaten; overcome.

So, between each downgrade, I made some plans, started some projects and built up the semblance of a new life. Adjusted it when needed, and just carried on.

Now to the crunch of the article. 

What is really annoying is that I needed to have projects, plans and ideas to stay sane. Creating timelines and lists was useless so I just flowed with the tide and enjoyed whatever I was doing. But that doesn't really suit me, or at least the old me.

One of my big plans was to create a digital history book celebrating this place I had chosen to retire in. The problem I kept running into was never finishing things in a 'reasonable time'. Could I still do the site? How long could I take? Was it worth it?

12 months later I have a website, online newspaper, Facebook page and online timeline but 'sharing' them is problematic; I wanted them finished, more professional, more, more, ... annoyance, frustration. 

AWAtt