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

Musing on the past

The Thoughts I Think, without notice

My thoughts have been a bit random lately, and I've found myself recalling the days/weeks either side of my confirmed diagnosis. The one constant complaint was, why won't anyone answer my most important question? What caused this? Cause and effect just weren't in any of my Drs vocab. Whereas I imagined that if I understood something about the cause or could affect the effect.

Frustrating. 

I got over that,eventually! 

Some of the many other What The moments still make me smile. Like, when I knew something was really 'wrong', and was visiting the Doc for blood results. She was very elegant, about 6' tall and was wearing a cool soft grey suit. I knew it was serious when, as she open my file and read the results her lovely soft white cheeks turned the same colour as her suit; she had literally turned grey. 

There was no way I was ready for what happened next. She: I want you to have more tests. Me: why? She: I'm not going to tell you. Just have a new set of tests done. Me: I'm not having more tests unless you tell me the results of these, or what you're worried about. She: I'm not telling you. Me: then I'll be going. 

With that I paused waiting for a response, nothing. So left her office, informed the receptionist I'd not be paying for the consult and walked out and started the search for a new Doc. 

Another time, walking across the campus with an Irish colleague who was telling me a joke that made me laugh widely. Thinking I'd just got a bit too boisterous, I tried to ignore the sudden pain in my chest area Big mistake, it was a pulmonary embolism. Just as we'll a major hospital was just over the road. Didn't get to walk across that campus again for over ten days.

There are many more, but I will save them for a later post. If you feel like it, please share any you think will bring a smile to my face.

Cheers 

One Big Sigh

Fantastic news, my eyes are A OK.

Can you see the bird in this tree? I Can :)

Had a real scare a few days back, retinal detachment was its name. After visiting a friendly Brisbane ophthalmologist, having 6 tests and 4 consultations inside 2 hours I got the all clear.

So all my plans to get some expert skills when using my iPad voice friend, learning braille and a few other brilliant ideas can go into the 'not urgent' box. 

But, I do have some plans that came to light in the time after the scare and before the all clear. 

 

Sitting, watching life on the dam

 Plan No. 1: 
make time to relax everyday, get back into the routine of yoga, breathing deeply and making time for 'zen' moments every day.

Garden colour

Plan No. 2: 

remember what I really enjoy doing - thinking right back to childhood to make sure I don't miss any. Then ... do them, as often as possible. The list so far - gardening (already pruned 2 large bushes), creative art (have created one piece of garden art and planned 2 more), repair or revive furniture, reading, photography, & painting (2 in the planning).

Breathing fresh air with calm mind

Plan No. 3: 

review the things I can control, and want to control, that are important to me. Then simply, take some action.

Plan No. 4:

not there yet, but I am sure it's working its way to the top of my mind.

Good to put the past week or so behind me. Thinking a good long walk in the bush is the go!

Platitudes, or Postertudes

Is anyone else sick of them? Those cheerful, so very very positive posters that appear on Facebook - regardless of the effort you make to ban or block them.

Not that they're all bad, offensive or inappropriate. Maybe, it's just my mindset. But let me explain.


If you scan previous posts you should, I hope, get the idea that I'm basically a positive forward looking person. So how could I possibly have a problem with Postertudes stating ...

• Be strong, you can do it
• If you don't have your health you have nothing
• Make the decision, be positive, you'll be happier!
• Happiness and health go together, choose health

Or similar such ideas?

And I should admit, I have used statements in training or development sessions in the past. I thought of them as motivators. Hopefully, I didn't send out the message that if you don't 'fit the bill' then you are a diminished person. You might even find one on my Blog page. Ouch!!

That is what I object to! I don't have health, and am really happy - at least as much as the average person. Being less than normal was not my choice, genetics had something to do with it :)

I am strong ,very strong- I just don't let he whole world know when and why. And I do make choices, good choices; often.

Rant over.
Message of the post. Think twice when you create and share these sentiments because they often hide 'put downs' couched in good sentiments and pretty pictures.