Tuesday, 27 January 2015

It's Hot

It's hot here in South East Queensland.  The Wet has arrived, so it's hot and humid.

I don't do well in the hot weather. (I don't do well in the cold weather either, but I'll complain about that mid-year.)

I have an air conditioner, but only in the living area of the house, and the really hot days can be more than the air con can cope with.

Heat makes me fatigued.  Lupus fatigue is tired times a thousand. Every part of me feels tired, even breathing is exhausting.

The air conditioning doesn't reach my bedroom, and sometimes the fan just doesn't make enough difference for me to be able to sleep, so I just lie in the heat, getting more and more tired.

I had a brainwave the night before last.  I picked up my pillow and moved to the couch to sleep under the air conditioner.  It was the best night's sleep I'd had all summer.

A good sleep is a great help.  I still feel fatigued, but I feel like I can survive it.

So if you're looking for me, I'm spending the rest of the summer right beside the air conditioner.

Sunday, 25 January 2015

Revisiting The Business Directory

My necklace and earrings made
by Annie at Bracelets Beads and Bling.
When did you last look at the  Lupus Business Directory?

It's worth checking it out when you're looking for unique handcrafted gifts, from jewelry to artworks, to scarves, to toys, and the range keeps increasing.

All of the businesses listed have one important thing in common: each is owned/run by someone with a chronic illness.

Aside from the obvious physical issues that come with having a chronic illness, we also face a serious financial issue - our capacity to earn a living is reduced along with our physical abilities, while the costs of medication and doctors increases our expenses.
My grand-daughter's "ugly
duckling" made by Anne
at Miniature Monkey Creations.

So when you buy from a business listed in the directory, you don't just get some amazing products you couldn't get anywhere else. You also get to help someone with a chronic illness to pay the bills, buy the pills,  have a just that little bit extra financial freedom.

Our little small and micro-businesses won't make any of us rich, but every time someone buys something we produce, it does make a difference.

So if you haven't looked at the directory for a while, why not take a look now? I'm sure you know someone having a birthday some time soon, who would just love something they can't find in the local shops.

Saturday, 24 January 2015

What Lupus Takes Away

A little while ago, ABC's 7.30 program had a story on a new growing group of homeless people: older women.

It didn't surprise me at all that the first person interviewed in the story had lupus.

You see, I came very close to being one of those homeless women. A couple of years ago, I had to stop work completely because of lupus at the same time as my rent increased to an amount more than my income.  I had a miracle that Christmas - a home I could afford to rent became available just as I most needed it.

It was almost a year after that before my superannuation fund finally put me on permanent retirement, with a payout that finally enabled me to buy a house.

Many women's stories don't end as well as mine.

So here's the basic problem spelled out:

  • Most people with lupus (and a number of other similar conditions) are women.
  • Women tend to have less superannuation than men, because of time out for the workforce to have children, etc.
  • Relationships are under extra stress when you add chronic illness into them, so quite a number of lupies don't have a partner to "support" them.  
  • The unpredictable nature of lupus means that even part-time work can be hard to maintain.
  • Many lupies are unable to convince their superannuation funds that they are sick enough for retirement on medical grounds.  (We usually don't look as sick as we are.)
  • Many lupies are unable to convince Centrelink that they are sick enough to require a Disability Support Pension because of their illness. (Again, we usually don't look as sick as we are.)
  • Rents keep going up to ridiculous levels.
  • Lupies have the added expense of managing our illness, on top of everyday life expenses.

I don't have a solution to the problem.  I wish I did.  It weighs on my mind a lot, that I was saved from this additional problem, when so many others aren't.

The only thing I have been able to do so far to help is to establish the Lupus Business Directory on this site. Many of us have set up small or micro businesses. We have hobbies (eg writing, beading, etc), which produce saleable things.  The Directory is a place for people with lupus and other chronic illnesses to advertise our micro businesses. I don't say that buying one beaded bracelet will save a lupie from homelessness, but it will help a little.

Oh, if you're a lupie (or someone with another chronic illness) with a small or micro business, and you're not already on the directory, please email me the details. There's no cost to be listed.

Reference: ABC 7.30 story on Older Australian Women and Homelessness

Related posts:
My Christmas Miracle
Money, Money, Money
A Moving Experience

The Lupus Business Directory

Thursday, 22 January 2015

Letting Go

Things change.

That's how life goes.

I understand that, but it doesn't make it easy.

When I first moved here, I decided I'd keep helping out at Ashgrove West church.  It meant an hour drive each way on a Sunday, but I love the congregation, and I really feel I belong there.

Now, I've had to admit it's more than I can manage.

The Sunday before last, I was so sore and tired after the drive, I struggled to stand to lead communion.  Everyone could see just how hard it was.  No-one seemed surprised when I said I have to give up.

I'm going back next month, to lead communion for the last time.

In the meantime, I've been to the local church, Ipswich Central.  It's nice. The people seem friendly.  I don't yet feel there's anything I can really contribute, but I'm sure it will come in time. God will help me find a place in this congregation.  And, of course, it means I will have the chance to get to know more people in the community I actually live in.

It's not bad. It's just change. I know that.  But I'm still grieving over what I have to give up, and resentful that this is another thing lupus has taken from me.

Saturday, 10 January 2015

Cooking in the fog

Well, the good news is I didn't burn the house down.

I was just trying to cook dinner.

Putting vegetables in a saucepan, and putting it on the stove to cook worked perfectly.

It was the meat that was the problem.  I was just going to take it out of the freezer and toss it in a non-stick frypan.  How hard could that be?

With brain fog, anything can be a challenge.

At first, it wouldn't cook.  It took me a while to realise I hadn't actually turned on the hotplate.

A few minutes later, the kitchen filled with horrible, acrid-smelling smoke.  You see, I keep these neat little aluminium covers over the hotplates when the stove is off, so I can use the stove as an extra food preparation surface.  I hadn't taken the cover off, and the paint on it had burned.  It only took a pair of oven mitts and a bit of juggling to remove the cover, and replace the hot frypan directly on the hotplate.

All good.  I managed to cook and eat dinner without incident.

It wasn't until the next morning, I discovered that after all the fuss, I hadn't turned the hotplate off when I'd finished cooking.

Yes, my stove had been happily cooking nothing for about 12 hours.

New plan: my long-suffering son who lives with me will now have to double-check absolutely everything I do, just in case I risk burning the house down.

Related posts:
Brain fog keeps me occupied
Waiting for the fog to clear
And the fog descends again
Cool morning with a chance of heavy fog
Fighting through the fog
Cognitive dysfunction
A little short of brain power
What happens next?
Lost, one brain, if found return...
I don't need help, really
Not crazy, just lupie
Alas! Poor memory

Friday, 9 January 2015

Inside my body is chaos

Explicit ickiness warning!

People sometimes ask if I think everyone with lupus should be on a gluten-free and lactose-free diet.

My answer is that lupus is different for everyone. If you have the same gut symptoms as me, it's worth checking with your doctor whether you need to restrict gluten and lactose.

So what are these symptoms?  Usually I just say I have reflux and irritable bowel.  If you don't really what those things mean, I guess it doesn't mean a lot.

Here's in detail what is going on (for me, it could be different for other people):

Lactose is the sugar that occurs naturally in milk. (Most things that end in -ose are sugars.)

When I have lactose I get reflux.  Sometimes that's just an uneasy feeling in my chest. Sometimes it feels like hunger, and makes me desperate to eat endless amounts.  Reflux also takes away my ability to realise I'm full, so I just keep bingeing.

That's mild reflux.  If I've had a lot of lactose, I get a more severe reflux.  That is just an incredible pain in the middle of my chest.  A couple of times, I've found myself on an electrocardiograph machine, because a doctor really wasn't sure if it was reflux or heart attack.  Once, I ended  up in an emergency department bed, being fed a mix of a local anaesthetic and mylanta, through a long straw so the anaesthetic got to my gut without making my mouth numb.

Gluten is the protein found in wheat (including spelt), oats, rye and barley.

When I have gluten I get irritable bowel syndrome.  For me, this causes diarrhea, which is urgent and frequent, and comes with lots of blood.  If it's really bad, I pour blood between the loose bowel motions as well. This all comes with either  severe cramping pains, or ominous volcanic rumblings accompanied by bursts of toxic gasses.

Recently, my doctor told me it was OK to try a little lactose and gluten again, to see if I have built up some tolerance over my years of not eating them.  Now, I can have a very little without a problem, but that very little is exceeded quickly.

At home, I still cook my lactose free and gluten free diet.  When I'm out, I allow myself small amounts. And sometimes, when I'm enjoying time with family or friends, I go past my limit, deciding that the enjoyment of the moment is worth the consequences.

So do I recommend lupies (or anyone else for that matter) go gluten-free and lactose free? Well, no, unless they actually need to.

Related posts:
Why I'm gluten free
A conversation with my doctor
Food and inflammation

Wednesday, 7 January 2015


I've started the New Year with a definite plan.

I'll try hard to take care of my diet, and to do a little bit of exercise.  If I fail, I won't beat myself up over it, and will just try again the next day.  I'm going to do what's good for me, without worrying about the number on the scale (because prednisolone and any number of other things affect that number any way.)

I'll try to keep on top of my work around the house and garden, so I don't have lots to catch up. But, if I don't get to keep up with everything, I'm OK with that.

I'm not going to stress about what I don't get done.  If you visit me and the dishes aren't done, don't be surprised. (The carpet will be vacuumed - my son does the heavy jobs.)

I will rest if, and when, I need to, and I won't feel guilty about it.

I will try to build some relationships with other lupies locally. (I've already arranged a get-together for the Lupus Association Queensland, at the end of February, so lupies who live in this area can meet up.)
Most of my life, I have been mostly interested in caring for other people.  This year, I'm aiming to learn to care properly for me. (That doesn't mean I will forget everyone else.)

Sunday, 21 December 2014

Hope for Christmas

We're just days away from Christmas, and I've done about a quarter of what I wanted to do over about a month to prepare for Christmas.

What I would love for Christmas, is a break from lupus symptoms.  I'd love to go from Christmas Eve to Boxing Day without pain, or fatigue, or irritable bowel or reflux, or any of the other random things lupus will do for no real reason.

And I hope and pray for the same for all of the lovely lupies who have read this blog, or followed the Sometimes, it is Lupus on social media over the year. I hope you all get to enjoy Christmas, with your family, friends, or whoever you share with, and that lupus leaves you alone for a while.

Thanks for sharing the year with me.

Merry Christmas lovely lupies,
Hang in there, one day, we'll have a cure!
Love from Iris.

Friday, 12 December 2014

Alas! Poor Memory.

Brain fog has attacked again!

Sometimes, my cognitive dysfunction has no real consequences.  I hallucinate that the doorbell's rung.  I open the door and no-one's there.  It doesn't matter.

Sometimes it's a bit more serious.  Not all that long ago, on a Sunday morning, I found I just didn't have sufficient energy to drive to Brisbane for that Sunday's church service.  I figured that it would be all right, there's no great consequence to missing just one church service, after all.  What I had forgotten (and forgotten so completely that I hadn't done any preparation at all that week), was that I was rostered to lead worship that day.  When the congregation gathers at church, and there's no-one standing up the front, people notice. I'd had several worried texts from people asking if I was all right, and I'd just been saying, "I'm fine, just fatigued," before it finally clicked!  It's the nature of the church that I'm part of that no-one thought to tell me off for letting them down, just to all be concerned about my welfare.

For me, that was devastating. Ministry isn't just "the job I had to retire from", it's who I am. That little bit I can still do in retirement is precious. I felt I didn't just let down a congregation of people I love dearly, but I'd also let down God. I understand that neither God nor the congregation is mad at me for the failure. They understand that with my limits, this stuff will happen. But I'm mad at me, on their behalf.

Sometimes, it's not only serious, it's quite ironic.

For more than two years, I've been on a waiting list to see the Neurology Clinic at Royal Brisbane and Women's Hospital.  I've been desperate for that appointment, hoping against hope that my memory problems, my fuzzy thinking, my hallucinations, can all be cured.

I finally got that precious appointment.  I forgot to go.  Really, I forgot to go to the appointment I was desperate to go to for help for my memory.

I went crying to my GP, who told me to call them and ask for a second chance.  I called. I do get a second chance. Some time in the New Year, I will be given a new appointment.  That's my last chance.  If I don't make that appointment, I will have to go back to the bottom of the waiting list.

When I get the new appointment, all of my family members are going to put my appointment in their diaries, so I'm not the only one to try to remember it. I'll get to it.  I hope. As long as I remember how to get there.

Monday, 8 December 2014

Why Face The Struggle?

Sometimes with lupus, or with any chronic illness for that matter, the struggle of just living daily life gets hard.

We all need to find things in our lives that make facing up to the struggle against our illnesses worth while.

For me, the big thing that makes it all worth while is my family.  When I was first diagnosed, and I read about just how bad lupus could get, I promised myself I would do everything within my power to keep as well as possible until my children reached adulthood.  Of course, once they reached adulthood, I suddenly found myself with a grandchild. Spending time with my granddaughter makes any day worth while, no matter how sick I am, no matter what else is happening. (My adult "children" are still very important to me as well, of course.)

Creative expression is another thing that makes it all worth while.  Even though lupus is affecting my mind lately, I still get to enjoy writing, and baking, and  I'm slowly working on getting my sewing and arts and crafts space useable.

Feeling that I'm doing something of use for someone else is also very important to me.  My biggest fear is of becoming "useless".

Another thing I've discovered recently, is gardening.  I'm not very good at it, and a lot of plants die, but I'm learning as I go.  I'm in the process of getting a rainwater tank, so I can actually have enough water for my garden. (There's issues with that, the tanks are halfway installed and now a neighbour says they're infringing on her land - the boundary is very unclear.)  All of life has its frustrations, even, sometimes, the things that make getting up and facing the day the illness worthwhile.

Everyone who has a chronic illness has times when they just wonder why they bother taking all the medications, getting out of bed, and trying to just get through the day.  And we all have to find those things that are so important we will get up and fight for them.