Sunday, 27 April 2014

What If?

I asked lupies on social media a while ago what they would get, if they had one huge bucket of money
to spend on just one thing for their health.

There were some interesting answers.

One person was so glad of finally having a diagnosis and treatment that she felt she didn't need anything more.

Others wanted to improve their ability to exercise, one suggesting a heated therapy pool, another a personal trainer with special qualifications in dealing with conditions like lupus.

 Someone else suggested that if they had money for something big, it would be for a huge Australia-wide lupus awareness campaign.

As for me?  Well, since my daughter and her family have moved into the next flat, I've come to realize just how much I depend on them. I don't need to be looked after all the time, but sometimes I do need help with all kinds of odd little things - from zips I can't do up, to things I can't reach or lift, and on really bad days the shoes I can't reach to put on.

But as her baby grows up, her flat is getting smaller, and they won't be able to live there for ever.  So if I had the money, I would buy us a suitable home.  Ideally, it would be a house with a granny flat, or be a duplex with room for my daughter and her family in one home, and for my son and I in an adjoining home. Maybe even when my son is eventually married, there could be some way to expand to have three homes which were close or linked. The idea would be to give everyone independence, but also to always have family close at hand when needed.

That's probably a crazy daydream, but it would mean I could be as independent as possible, for as long as possible.

Saturday, 26 April 2014

Wake Up and Smell the Coffee

I heard a story on the television news last night about research into people who drink coffee.

Apparently if you regularly drink three to four cups of coffee a day, your risk of getting diabetes is reduced.

The theory was that people who drank coffee did so as an energy boost, so they were more active and being active was what reduced their risk of diabetes.

I didn't catch who did the study, how it was done, or how many subjects there were, so I can't tell you how reliable or otherwise the research was.

I do drink three to four cups of coffee per day, but I'm not sure I get the same health benefits from it.

You see, I drink two cups of coffee at breakfast time to get the energy to eat breakfast, take my pills, and think straight to do a little bit on the computer.  If I'm lucky, I'll still have enough energy to put a load of dishes in the dishwasher.

That's about as far as two cups of coffee takes me, before I need a nap.

Lupus fatigue is more powerful than a simple stimulant like coffee... so even when I get myself thoroughly caffeinated, there's a limit to what I can achieve before fatigue takes over again.

In my house, running out of coffee is a disaster. It means nothing gets done, not even thinking, as fatigue makes my brain fog far worse.

Well, my coffee cup's empty again, so I'm off to lie down. See you later.

Friday, 25 April 2014

World Lupus Day Project

Want to help with the Sometimes, it is Lupus project for World Lupus Day 2014?

I want your first name and your completed sentence "Lupus bites because....."

Either email me your response, comment on this post, or send it to me via social media.

Your sentence can be funny, silly, serious, angry, just be yourself (but keep the language appropriate for publication.)

I'll need responses by the 9th of May, because the post will go live on 10th of May (World Lupus Day.)

Thursday, 24 April 2014

I Don't Need Help. Really.

I have friends living upstairs. I have a son living with me. I have a daughter and son-in-law living next door. I am much better off than many lupies.

If I need help with anything at all, I just need to ask.

But usually I don't ask.

Oh, I ask my son to empty the dishwasher or take out the rubbish, but he lives with me. He helps dirty the dishes and create the rubbish. So it's OK to ask him to do those things.

I don't want to be the needy person who's always wanting something from someone.  So even though family and friends have actually offered to do my vacuuming and things, I usually put them off.  I'm going to do it.  OK, maybe not this week, but I'll get to it eventually. And if the vacuuming is done once every two or three months, it's still done. If the stack of dishes in the kitchen reaches to the ceiling, I'll catch up one day.

I refuse help, I think, because if I accept the help, maybe I'll realize it's not an occasional thing, maybe I actually couldn't cope on my own.  Maybe I can't be independent any more. And that would just be too much for me to accept.

Of course, when it's something really important, I can ask for help, and I can accept it.

I did ask my daughter for help recently.  One of the lovely ladies from my church died, and I had a funeral to do.  Ever since the day brain fog messed with my head so much while I was preaching that all my notes seemed to be gobbledygook, I've been afraid to lead worship again in case the same thing happened.  I couldn't refuse this lovely lady's funeral, however.  So I recruited my daughter to help.  I wrote the service, and had  my daughter read through it.  The idea was that as long as she could assure me that what I wrote did indeed make sense as written, all I had to do on the day was read it.  Whether it made sense to me or not when I read it wouldn't matter - because I had it independently verified that it did make sense.  It worked. Actually, I got through the whole service without messing up, although I was exhausted at the end of it.

When my handbag disappeared (presumed stolen because everyone has searched everywhere) I accepted help.  I just searched, and stood by bemused while other people searched, checking places like the microwave and clothes dryer in case brain fog had led me to believe one of those places was the right place to leave my handbag.  When my son said we were making a list of cards to cancel and change, keys to copy etc,  I humbly and quietly accepted the help that's offered.

So I really am capable of asking for, and accepting, help.  I'd just rather not do it.  I'd rather be independent. I'd rather rely on myself... even if the self I'm relying on isn't very reliable. How's that working out for me? Well, some days it's OK.

Saturday, 12 April 2014


Things I hate about gastroenteritis:

  • If anyone I know has it, no matter how careful I am with hygiene, I will get it. It doesn't matter if I've actually been with the person who has it, or just talked to them on the phone or by text, I will still contract it. My immune system is so mixed up it actively seeks out bugs that are outside my body, runs out to greet them and invites them in for a party. The immunosuppressant drugs I have to take are great for bug parties.
  • It always hits in the middle of the night, so I wake up in the dark, and disoriented. At that point, my joints announce, "we decide if you can stand up and the conditions under which you will do so." The negotiations are short-circuited and I have to run, just hoping knees. hips and ankles won't give out completely, no matter how much they are object. 
  • Sitting in the bathroom for long enough, and in the right position to become convinced that my legs have become possessed by the ghost of John Howard's eyebrows, and knowing that I don't have the physical or mental ability to use a razor at this stage, and probably not for the next 24 hours or more. (For those overseas, John Howard is a former Prime Minister whose eyebrows have a life of their own, and are more overgrown than any old growth forest.)
  • The need to learn skills like sitting on the loo and putting my head in the shower simultaneously. (Where my bucket went is anyone's guess. I'm sure it will turn up tomorrow, or maybe next week, or just after I buy a new one.)
  • I threw out a perfectly good shower mat rather than washing it. My bathroom smells like bleach, because I didn't have the energy to clean properly, so I just threw bleach everywhere to kill the germs.
  • Instead of using all the food I've eaten for the past six months, my body's been keeping it in storage somewhere (probably my thighs) for just this occasion.
  • Despite the ballistic expulsion of about 12,000 kilograms from my gut, I haven't lost any weight.
Well, that was my night.  If anyone needs me this morning, I'll be back in bed... or the bathroom.

Wednesday, 9 April 2014


For those wondering about my liver function results from the previous post, I've been to the GP, and the second blood test was better than the first, but still not quite right, so I have to go do it all again.