Saturday, 31 August 2013

More from Aviva

Remember Aviva, the little lupie with big plans to provide something wonderful for other visually impaired children?

Her first "Mind Theatre" story, has been produced and is actually ready to be distributed.

Here's the latest in her story.

Happy 13th birthday Aviva.

Friday, 30 August 2013

New Gadget

A couple of years ago, my daughter expressed some concern that I might become too gadget-dependent.

I asked if she'd prefer that I find ways to do things for myself, or needed her to stay home and look after me for ever. She agreed I should probably keep collecting gadgets.

My collection of gadgets to do things like open jars and ring-pull cans is quite impressive.

This week, I saw another thing in the shops that I just couldn't resist.  It's a liquid dispenser for the shower, to keep shampoo, conditioner, etc, at a convenient height and easily accessible with a push of a button.

Do I desperately need this at the moment?  Probably not. I could reach the shampoo on the low shelf it was on. However, on bad days, every little bit of energy I can save is useful.  Saving a little energy on basic tasks gives me a little more energy for something else.

Monday, 26 August 2013


Image: Cat in wardrobe.  Text: Brain Fog you know you have it when things just don't seem right.Lupus brain fog (cognitive dysfunction) has been misbehaving for me again lately.

The other day I went out for ingredients to cook dinner.  I was making lasagne, with chocolate brownies for dessert.

After making the sauces for lasagne, I discovered I'd bought a pack of spaghetti instead of lasagne sheets.  It was annoying, but not a disaster, I just layered spaghetti between sauces. It wasn't exactly the same, but it worked.

Then, I found, I only bought one block of chocolate, when I needed two for the brownies.  My son went to the shop to get another one for me. (My family will do anything for chocolate brownies.)

That was not really a disaster.  In fact, there were no really bad consequences. It was annoying and inconvenient, and I was frustrated with myself, but that's all.

Today's incident had the potential to be far worse.  I drove through a red light.

There was a green light to go straight ahead, and I went - around the corner, despite a red turning arrow.  That was the point when my son said we had to stop for a coffee, and after that we were going home for me to have a nap.

Is there a solution to brain fog?  I don't have one yet.  A nap does seem to help a little, but it doesn't fully fix it.

I'm on a waiting list to see a neurologist. Until then, I write everything down, because I can't count on my memory. But cognitive function is more than memory. It's also the endless thinking processes that have to be done all day every day.

Related post:
My addictive Chocolate Brownie recipe.

Friday, 23 August 2013


Inflammation - it's a word that lupus patients come to know only too well.

Inflammation is meant to be the body's first line of defence against invaders.  Instead, for lupies, it becomes the body's first line of defence against itself.

So, I wasn't at all surprised when I went to a physiotherapist about my bad hip to be told I had gluteus medius tendonitis.  The physio explained that this starts with inflammation in the tendon, which then leads to the threads of the tendon not acting correctly and becoming tangled, usually tangling blood vessels and bits of nerve as well. No wonder it hurts.

Yes, something can be done about it, but not easily or quickly.  So I've been seeing the physio once a week and doing exercises at home.  It has helped. I can walk further before I'm in so much pain I need the walking stick.

It won't be perfect, because there is a bit of problem with the joint itself as well. (Of course, the joint problem is caused by inflammation as well.) But it is getting a bit better, and hopefully will continue to get better.

Inflammation has other names, depending on where it appears. You might recognise tonsilitis, rhinitis, hay fever, appendicitis, dermatitis, anything else that ends in -itis.

Personally, I have a long history of tonsilitis, rhinitis, hayfever and dermatitis. I have a short history of appendicitis (I parted company with my appendix on very unfriendly terms very quickly.)

Irritable bowel, another issue many lupies deal with, has recently been found to have a link to inflammation.


Wikipaedia: Inflammation

Get Body Smart: Gluteus Medius Muscle

Wikipaedia: Gluteus Medius Muscle

Better Health: Tendonitis Irritable Bowel Syndrome

Tuesday, 20 August 2013

Something Bad Begins

Have you ever heard the phrase "cruel to be kind" used to justify saying something horribly judgmental and usually very offensive.

People use it when they tell people with lupus to get up and do something and stop moping around.... or when they tell people with depression to just get over it.

They say they only want to help.

Have you wondered where the whole "cruel to be kind" thing came from? Which famous psychologist came up with this idea?

Actually, it was Shakespeare.  It was Hamlet talking about having just murdered Polonius. (The being cruel to be kind in the end leads to the deaths of all the key characters.)

I do repent; but heaven hath pleas'd it so
To punish me with this, and this with me,
That I must be their scourge and minister.
I will bestow him, and will answer well
The death I gave him. So again good night.
I must be cruel only to be kind.
Thus bad begins and worse remains behind.

Usually, when someone tries to be "cruel to be kind", it really is something bad going on.

With lupus patients being challenged to push themselves further, it can be dangerous.  Most of us know our limits, we learn them through hard experience. Pushing past the limits only makes things worse. Physical illnesses, whether depression, cancer, AIDS, or whatever, do put limits on people. You can't make them better by just acting as if they don't exist.

With people with depression, telling them to "just get over it" or to "cheer up" can actually make things worse.  Depression, like other mental illnesses, needs to be treated seriously. Medication and cognitive therapy help, but just being unsympathetic to get the person to "snap out of it" don't help at all.

Being "cruel to be kind" really is just being cruel. Something bad begins and something worse remains behind.

Related posts:
Fatigue and Depression
Lassie, Get Help
The Bottom of the Well

Positive Attitude
The Energy Budget
Slow Recovery

Wednesday, 14 August 2013

Positive Attitude?

There was an interesting conversation on the Sometimes, it is Lupus Facebook page today.  

It began with my good morning post: 

Good morning lovely lupies. 

It's Ekka holiday here in Brisbane. (That's our agricultural show, billed as "the country comes to the city".... showbags, sideshows, fireworks, that kind of thing.)

I didn't even consider going. The thought of hours on my feet, being jostled by crowds, and the fact that all the viruses that are circulating all around the state gather together in one place, just made me decide it really wasn't worth it. 

What about you lovely lupies? Are there things you don't even consider now, that you might have found fun before?

This began a conversation with people talking about what they had given up, and what they had substituted, such as a night out at the movies instead of a night out dancing - how we have found creative ways to be happy and do fun things despite our limitations.

Then this comment came through:

Sorry but why let lupus continue to dictate your life? Why stay at home whingeing about it? Get positive with your life. Learn to rule lupus and not let it rule you. It's depressing enough having it. The world's not going to stop for you. Stop feeling sorry for yourselves. Mind over matter people! Stay positive.

I haven't identified the person because I don't want to embarrass her further.  There were enough indignant and hurt responses to the original comment.

I quote it here because it's a good talking point.

No-one wants to miss out on life. None of us want to sit around doing nothing all day.  Regular readers will know my struggle with the whole issue of being "retired" so young.

But there are two kinds of positive attitude: realistic and unrealistic.

A realistic positive attitude will say, I know my limits, and will make the absolute most out of life within my limits.

An unrealistic positive attitude will say, I am going to act as if my limits don't exist and just push myself until I collapse.

Most of us have tried the unrealistic attitude, which is perhaps more accurately called denial, at times, and have had to deal with the consequences.  Denial is one of those things people tend to go through at some stage in grief, in learning to come to terms with something we have lost. 

Lupies learn the hard way that denial can only last so long before reality sets in.

So am I sitting around whingeing (Australian slang - moaning and complaining)?  I don't believe so.  I think I have a fairly positive attitude on life.  I do take my knocks and do get upset by them at times, but most of the time I think I find creative ways to make the most out of the life I have.  Most of the lupies I know are doing the same thing.

Saturday, 10 August 2013

It Stopped Being Funny

Today's shopping, my new floral walking stick,
and my backpack-style handbag.
A month or so ago, my son and I were at the shopping centre, and I was complaining about how much walking hurt my hips.  My son offered to go and get me a walking stick.  I said, "You do, and I'll hit you with it." We both had a good laugh.

Well, maybe it was a bit funny.  But you know what's not funny?  When I start walking my left hip hurts, then I start to limp, then because my right hip is doing so much extra work, it starts to hurt.  Then the level of pain in both hips just increases the longer I have to be upright.

I guess the reason I didn't want to try a walking stick was that they look so overwhelmingly like "old" and "disabled", maybe even like "helpless". I don't want to look like those things.

People tend not to change until the new thing is more attractive than what we already have.  Being able to walk further without as much pain has been becoming more and more attractive.

Today, I did it. I bought my first-ever walking stick.  It's a light-weight aluminium one, which has a floral pattern on it. So at least it's pretty, and doesn't look huge. And.... well, we spent a long time at the shops today, and I didn't feel much hip pain at all. So I guess it's a success.

Since I was spending on things to make life more pain-free, I also replaced my handbag, with a backpack-style handbag.  It means I'm distributing the weight of the things I carry across both shoulders, so one doesn't get so sore.

It's going to take a bit of adjusting, because using a walking-stick at the age of 47 doesn't fit the "me" I see myself as... but the flowers on it make it more fun and pretty, and I do enjoy having less pain.

Saturday, 3 August 2013

The Little Things

Image: bags of fruit and vegetables. Text: Food weighs too much ... when it's in the bag ... and when it's in my body.Sometimes the little things really are big things.

Yesterday, I went to the greengrocer and the butcher.  Normally, I'd take my son with me so he can carry the bags, but he wasn't available.

Both the greengrocer and the butcher happily carried my shopping to the car for me. They offered, without me asking, which means there wasn't the embarrassment of having to say I would have trouble doing it for myself.

Because lupus isn't visible, lupies often don't look like we need any particular help. I usually feel bad about asking for special treatment.

Offering to do something like carrying bags is old-fashioned, I know. But it's also a godsend for someone who has any kind of arthritic condition.

Both of these businesses are also very competitive in their pricing (also good for those of us on a pension.)

So, for the benefit of anyone else in the area (Brisbane northside) who might need somewhere to buy fresh food that is relatively inexpensive, and where they'll happily help you with your bags - here are the details of both businesses.

(This is not a paid/sponsored post.)