Tuesday, 7 August 2012

How Do You Roll?

This Month's Patients For A Moment Blog Carnival asks:

How do you roll? What do you have to do to travel or just get around?

The person hosting this month, had been through the most horrible experience with airport security in the USA. I've never had anything quite so horrible happen to me, but lupus has changed things.

One of the great pleasures of my life has always been driving - not in traffic - but long-distance  country driving.

I learned to drive on dirt roads - and for years when I worked as a journalist in north-west Queensland, it was nothing to drive six to eight hours each way for a story. And I could go from driving my V8 Falcon (back in the days when it was possible to buy fuel for a V8 Falcon without taking out a loan), to the newspaper editor's automatic car that just about drove itself, to the manual ute that deliveries used, without thinking. I could drive just about anything, just about any distance.

Post-lupus I've had to give up driving a manual car - I had to buy an automatic, because changing gears  causes excruciating pain in my left shoulder. (If you're in America and trying to work that out - we drive on the  left-hand side of the road here and so change gear with the left hand.) When I went to an automatic transmission, I also went to power steering. Even with a car that is easier to drive than anything I've ever owned before (and twice as expensive as anything I've ever owned before), I still can't drive long distances - because apart from pain, I have an issue with fatigue. I just get tired too easily.

Distances I used to walk, I now drive. Distances I used to drive easily, I now take the train.

And of course there's an issue of where to park. I don't qualify for a disabled parking permit, because I don't need any aids for walking.  (I could get a walking stick, but seriously, what would I hold it with when my wrists and shoulders are just as sore as my knees, hips and ankles?) Most of the time it's not a problem, but at those times of year when the sales are on, and the nearest available parking space is so far away that the shopping centre is a vague dot in the distance, the walk just to get in the door can leave me too exhausted to get into the shop and buy whatever I went there for anyway.

Taking a train also has a challenge - wherever possible I avoid travelling at peak times.  Because I don't look sick, no-one is going to offer me their seat. My co-ordination,  balance, and the pain in my joints, means that it's really not a good idea for me to be standing on board a moving train. So, if it's possible, I plan to travel at a time when I know there's enough seats available.

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