Tuesday, 24 January 2017

Wisdom of the Ages

Early to bed, early to rise ... makes a lupie exhausted.

Hair today, gone tomorrow.  (Where is it? Oh, the brush, the drain, the couch, the bed, everywhere except my head.)

A stitch in time ... will probably get infected because of my stupid immune system.

Out of the frying pan, into the fire - oh no, it's just another fever.

It's always darkest ... when random pains wake me up, disoriented in the middle of the night.

A friend in need ... is another lupie wanting to know how to cope with the latest surprise symptom.

Hard work never killed anyone ... but it has been known to cause lupus flares.

It's a bitter pill to swallow ... and here are another dozen of them.

Love conquers all ... but, sadly, it can't cure lupus.

If you have your health, you have everything ... so what have I got?

Two's company, three's a ... lupus support group get together.

You have to count the cost ... to know if you can afford this trip to the pharmacy.

Good judgement never follows ... a bout of brain fog.

Lupies in glass houses ... should wear lots of sunscreen.

To understand lupies, you have to walk a mile ... in their sore joints.

Thursday, 19 January 2017

The signs of a flare ending: Lupie starts to do normal human things

Ways to tell I'm getting over a flare:

  • I make an appointment for 7pm, and think I might actually be awake for it.
  • I buy groceries, and get the actual things we wanted.
  • I have the energy to save money and buy meat from the wholesale butcher, and fruit and vegetables from the greengrocer, instead of just ordering all my fresh food from the supermarket.
  • I cook meals.
  • I actually have a choice of clean clothes.
  • The house becomes less like a disaster zone between visits from the cleaner.
  • I can actually stay awake for twelve to fourteen hours.
  • I write.
  • I sew.
  • I do all kinds of things I like to do.
  • I stop leaving hair everywhere (when flaring, I shed worse than my pets do.)
  • I see things that need to be done and do them, instead of collapsing in a heap crying.
  • I walk more and use the mobility scooter less.
  • I need less coffee to get through the day.
  • I use fewer pain killers, and don't really notice.
  • More music, less tv.
  • Things just get done. 

The danger of getting over a flare:
  • taking it for granted that I can do things.
  • trying to fit too much in, to do too much.
  • pushing past the limit and causing another flare.
Right now, I'm enjoying that I'm starting to be able to do more, and trying very hard to stop myself from doing anything that will cause me to get too sore/tired and start a fresh flare.

It makes a difference

You might have seen online a picture of a woman whose mobility scooter has tipped over, leaving her stuck against supermarket shelves.

Her story is here.

In short, she is a woman with a spinal condition that prevents her standing and walking for any length of time.  She was buying groceries for her family, and her scooter overturned while she was reaching for her husband's favourite soft drink.

Someone (a stranger) nearby took a photo and uploaded it to the internet to make fun of her.

I'd like to contrast that to the day my mobility scooter overturned.

It was year or so ago, at a theme park.  I had my little granddaughter on the scooter with me, and was following my daughter who was walking a little ahead of us.

She walked over a small bridge, and without thinking, I followed.  The bridge was too steep, and the scooter turned over.  I did what I could to protect the baby from being hurt as we went over.

As with the woman in the photo, it happened in a public place with strangers around.

What those strangers did was: help me up, check I was OK, picked up the scooter and checked it was OK, reassured me that the baby was fine. Nobody took photos.  I don't know those people who helped, but I'll always remember their actions with gratitude.

As frightening as my experience was, I'm sure it was much better than the experience of the lady in the picture.

That being the case, I'd like to make a recommendation to anyone who reads this.  When you see someone in trouble (whether they have a disability or not) please behave like a decent human being, not a total jerk. It makes a difference.


I am the woman in the picture and this is what it was like: https://www.indy100.com/article/i-am-the-woman-in-this-picture-and-this-is-what-it-was-like-7444991