Monday, 21 January 2013

See you in February.

It's my last week leading up to moving house.  So, I won't be online for a couple of weeks.  I move on 28th  January, and have cleaning etc to do at the house I'm moving from.  I will be back early in February.

Friday, 18 January 2013

If Shakespeare Had Lupus

Shall I compare you to a virulent flu?
You are more savage and more permanent:
The flu's weakness, pains and fevers last a few days,
And when they pass they leave no trace.
But lupus flares continue months or years,
And times of remission are short-lived,
You change your evil symptoms constantly,
and bring unpleasant surprises day by day.
But you eternal lupus shall not fade
Nor let your victims rest from their torment.
Only death can end your tyrannous rule,
Until that day someone invents a cure:

So long as I still breathe, or eyes can see,
Lupus still persists, and will still torment me.

Thursday, 17 January 2013

Looks Like The Robots Are Not Taking Over
I had what I thought was a brainwave.  I'd save up for one of those little robotic vacuum cleaners.  It would take care of the carpets in the new flat, and save me lots of physical work that I really struggle with.

I put my idea on the Sometimes, it is Lupus Facebook Page, and gained some interesting responses, including issues I hadn't thought of.

Here's some the conversation (surnames taken out.)

Sometimes, it is Lupus I'm considering saving for one of those robotic vacuum cleaners. What do you think? Easier, less painful way to accomplish a challenging household task? Or: expensive trip hazard l would fall over and break within the first week?

Ashley I need one to

Sara I know someone that had one and the dog kept attacking it and breaking it...they kept getting the company to replace it till the company realized what was going on

Sometimes, it is Lupus l hadn't thought of the dog factor.

Joke I'd love to have one !

Kelly Coxon-Long I was thinking of getting one too

Maria I have one and don't care for it. If you have stuff on the floor of course it can't clean around it very well, like chaires and tables, and other furniture. I find it just as easy and less annoying to use a light stick vacuum or broom for bare floors.

Cathy  Maria, your dogs would eat it up the first day, thinking it's a rodent or something that they have to chase down and destroy! LOL

Cathy  hard flooring... nothing is easier than a dust mop. Carpet... get someone else to do it... kids, hubby... or if you can afford it, a house cleaner. Vacuuming carpet is one of the hardest things when you ache. I don't have Lupus, but I do have fibro, arthritis and muscles that were torn in a car accident, so I understand a bit.

Joey  Don't do it, PIA bend over more times than ya would if ya sweep or vacuumed , took mine back

Donna I think it will be bumping into more stuff than vacuuming. LOL!

Brenda  They don't work well at all. Really not worth the money.

Maria  Donna, you are right, it is constantly bumping into stuff, and it becomes terribly annoying.

Deb  I picked up a 3 in 1 bissel light weight vac. It is basically a dust buster with a handle. works pretty good even on the pet hair. I have 3 kids a dog and a cat and could not do the big vacuum every day anymore. so now I use the light weight bissel and my hunny does the big vac once a week. Working out much better

Heather Thanks everyone! I was debating getting one. Don't think I will now.

Sometimes, it is Lupus Thinking l probably won't, either,

Amanda Parents had one, not good idea I would say, nice idea if they worked good but from what I've seen I wouldn't x x

As you can see, other people  like me, who hadn't had one, thought they might be a good idea.  People who did have experience of them however, did not think they were useful at all. It was interesting that no-one who had actually tried one had anything good to say about them.  So it's back to Plan B - try to train my 18 year old to use a vacuum cleaner.

Packing Xrays

One day, I might write a book on how to pack to move house - if I ever master the art myself.

I've had far too many moves.  I've learned things like using linen as a packing material instead of things like bubble wrap - you have to pack it anyway, so you're saving space, and it's a good cushioning product. I've learned that I need to start packing a long way ahead of time, packing the things I use least first to get them out of the way. And I've learned to try to clear one room to stack the boxes in as they're stacked, so the rest of the house remains semi-functional during the process.

The finished product - my new xray storage and
transportation folder.
I had an interesting question this move.  Last move, I threw my growing collection of xrays into my daughter's high school art folio for the journey.  She's grown up and has a home of her own, so isn't moving a folio of art with me.

After a an unproductive afternoon of searching nearby shops for art folios, I turned to the Sometimes, it is Lupus Facebook Page for advice.  The suggestions were either the art folio I wasn't able to get, or to stick two sheets of poster board together to form an envelope.  That's the idea I went with.

After a quick trip to the newsagent, I had two of the thickest sheets of poster cardboard I could get. I used duct tape to create a hinge between the two sheets, and added self-sticking hook and loop fasteners so it can be held closed.

Monday, 14 January 2013

Business Of The Week: Deanas Dezigns

This week's Lupus Business Directory Business of the Week is DeanasDezigns.

Altered art jewellery by Deana Cravalho (lupus and ET)
A portion of proceeds is donated to American Lupus and Cancer societies.

Deana's explanation of her work is: 

An Altered Journey where hope, love, strength and careing have driven my passion in art....truly a gift from the heart. I hope my art work touches on important feelings and issues and helps those whom it can along the way. Portion of all proceeds are donated to the American Lupus and Cancer Societies. 
Much Love in Creativity -DeanasDezigns

When you buy from any of the businesses listed in the Lupus Business Directory, you are helping someone with a chronic illness to financial independence.

Friday, 11 January 2013

I Hate Moving!

Even my under-the-desk-dog is exhausted!
I haven't posted much lately, because I'm in the throes of moving home.

I'm packing and sorting, and have been for a while, and will continue to do so.  I should be back to normal by the start of February. Until then, my blogging efforts will continue to be a bit "hit and miss" I'm afraid.

So packing and throwing things out, and organising removalists, cleaners, garage sales, etc, has all been a bit much. My big fear, that of not being able to afford this move was allayed by the most amazing people: some have given me money and some have loaned me money, and now there is no doubt that, financially at least, I can survive the move.

Physically?  Well, I'm taking meloxicam (non-steroidal anti-inflammatory) daily. My rheumatologist only likes me to take it a couple of times a week, but my GP has said just take it if it keeps the pain under control - I can worry about getting back to normal after the move is over.

I'm exhausted, but so's my son, who doesn't have lupus, but has had to do a lot of heavy work.  Even the animals have had enough and we've still got a long way to go. Even the animals have found it all a bit much.

The protest against selling and giving away
so many familiar things.
The garage sale saw the dog attempting to make friends with everyone who came to the house, and the cat hiding.  Since then, a stream of people who have come to get things we've advertised for free on Gumtree to get rid of them has continued to disturb the furry family members.

Constantly having something to do has worn me out a lot as well, and of course, there's a deadline.

Trying to hold the list of things that needs to be done in a head that's affected by brain fog is not working wonderfully well.

I'm double-booking myself over and over again, and having to sort out what I'm actually doing when. And Australia's in a heat-wave, and heat always makes me fatigued.

So that's my rant for the day.  Did I mention that I hate moving?

The good thing is that the home we're moving to is much cooler than this. It's smaller and easier to clean. And because we're getting rid of so much stuff, unpacking should be much faster than packing.

Monday, 7 January 2013

Business of the Week - Craftego

This week's Lupus Business Directory Business of the Week is Craftego.

Handmade jewellery and crafts by Christina (Lupus)
Craftgo Newsletter (blog) here.

Chrissy makes the most amazing jewellery, it's well worth a look.

Wednesday, 2 January 2013

Refreshing? Relaxing? Exhausting!
Some of the simplest things aren't so simple for people with lupus.

And sometimes, I think: "This is so weird, it has to just be me."

Well, I posted about this one on the Sometimes, it is Lupus Facebook Page, and from the responses, I know this isn't just me.

There are days when having a shower leaves me exhausted, and I need a nap to get over it. Lots of other lupies face the same issue. Some other lupies have reported that the water can physically hurt as it hits them, leaving them sore all over.

As I said, it's a simple thing, and something most of us do pretty much every day.  (And in the hot Queensland climate, it really is necessary.) Yet, when lupus is misbehaving, even this little thing is a major effort. It's one of those tasks on the to do list that can't be delegated.

Most of us have strategies for those things that absolutely must be done.  I leave my shower until last thing before bed most nights.  It's so I know I don't have to find energy for anything more.

For many people a shower is relaxing and refreshing, and it is for me when I'm (relatively) well. When I'm sick, it's just another thing that I have to budget energy for.