Wednesday, 30 December 2015

Resolving To Not Have Resolutions

Image: sleeping cat.  Text; New year. Same lupus. Same me. Resolution? Survive.Tomorrow is New Year's Eve.

By tradition I should be thinking about all the ways I could instantly become a better person the day after tomorrow and thereby change my entire life for Earth's next circuit of the Sun.

In case I'd forgotten it was my duty to mark the planet's progress by becoming a better person, Amazon just sent me an email with numerous suggestions for self-improvement books.

I've had New Year's resolutions before.  In fact, I've recycled quite a few from one year to the next, or even from one decade to the next.

This coming New Year, I am resolved that I will not have a resolution.

Yes, you read it right here. I am not going to become a better person for 2016.

I'm going into the next circuit of the Sun with all the same faults, foibles and failings as I've had all through the previous one.

Oh I know, there's lots of ways I could improve.   I also know that if I were seriously going to work on them, I could start any time, not just save it all up for one day of the year.

So what am I going to do in 2016? The same as I did in 2015. I'm going to make the most of good days, while trying not to over-do it, and I'm going to take a rest and care for myself as best I can on the bad days. I'm going to thoroughly enjoy having my family and my animals around me. I'm going to take my medication, do my blood tests and see my doctors.  I'm going to keep in contact with friends through Facebook and wish I had the energy to go and see them face to face.

In short, I'm going to live the life I have, and not beat myself up over my imperfections.

I hope and pray that 2016 will be a good year for all my readers, whether or not you're planning to become a better person.

Thursday, 24 December 2015

Christmas Past, Christmas Present

Image: My dog in santa hat and tutu. Text: may peace, hope, love and joy be yours this Christmas... and may lupus give you a break.When I was a teenager, I would watch my mother on Christmas Day,  spending hours in the kitchen to produce a hot roast meal.  She would sit at the end of the table in the summer heat, pouring sweat after hours in the kitchen, and I would say to myself, "I am never, ever, going to put myself through that."

When I was first married, I went to the opposite extreme.  Christmas lunch was cold ham, and cold vegetables (even canned vegetables), and for the very first year I even used disposable plates so I wasn't caught in the kitchen doing dishes either.  I had done baking beforehand and did have home-made cake, pudding and other treats.  I just wasn't spending Christmas Day in the kitchen.

Over the years, as the kids arrived and grew, I found myself spending more and more time in the kitchen for Christmas.  Anything that could be baked in advance, I still did in the days and weeks leading up to Christmas.  But it was still a heavy day of work. (Especially as, in ministry, I often had at least two Christmas Day worship services to lead first thing in the morning.)  Somewhere along the way we began to start Christmas with a cooked breakfast as well, so I would cook breakfast for the family, then rush out to do the services and then come back to cook lunch.

I've toned things down quite a bit since I first got sick.  For a couple of years the kids and I had Christmas with a friend of mine.  It was much simpler than I'd been used to - and honestly, I think we all enjoyed ourselves more.

For years now, I've been paring things back, simplifying, so that I didn't work myself into having a lupus flare.

This year, I'm doing nothing. Seriously.  My daughter's hosting Christmas, and she and her partner are doing all the work.  They've told me to just show up.  This year, my only job is to enjoy the time with my family (and perhaps spoil my grandchild.)

Can I encourage you to not work yourself into a flare, either?  However you celebrate Christmas, remember it's not about how much work you do or what you achieve.  Christmas is about love.  It's about God's love for the world, and it's about our love for each other.  Please, save as much energy as you can, just to enjoy being with the people you love. (And if you can spend the day somewhere air conditioned, all the better.)

I hope and pray all you lovely lupies out there have a wonderful, peaceful, Christmas, full of love and joy, and without pain.

Thursday, 17 December 2015

Ask And You May Receive

Image: red rose on black background. Text: Asking for help is never easy, but sometimes it is necessary.It's hard to ask for help.

I like to think I will eventually get to that whatever it is I hope to do. Unfortunately, incomplete projects are building up and building up all over the house and yard, and in my computer memory.

When we first moved here, my son had been taking time out from study, reassessing what he wanted to do.  He went with me to buy my mobility scooter, and he is the person who assembles it, and pulls it apart, to put it in and out of the car.  He brings the scooter battery in from the car to charge it up for me. He goes with me to doctors' appointments and remembers what things I have to do to follow-up when my brain fog's at its worst.  He makes sure I take my tablets on time.

But of course, he couldn't just stay home all the time, unless there was a way for him to have an income to do it.  As it turned out, there was.  With help from my GP, we applied for him to have a carer's payment. (There's a link below to help you find information on carer's payments at the Centrelink site.)

Sometimes I worry that it would be better for him to be studying or working, doing "normal" things for a young man, instead of spending all his time with his Mum.  But, at least for now, he's happy for helping me to be his "job".

Strangers in the shopping centre have told him how much they respect the work he does when he helps me out in the shops.  It may not been a career he would have chosen, but for now it's what he does, and he does it well.

I still potter around and do what I can, but anything that requires lifting or stretching, or anything I'm just too fatigued for, he takes over.

To top that off, we also applied for help from the state government's community care services.  I've been approved for one and a half hours per fortnight for help around the house.  That means we have someone come in and do the vacuuming and cleaning the bathroom and kitchen.  After the state government subsidy, I pay $5 per hour for that extra help.

(There's a link below to information for Queensland, but a quick web search should help you find your own state's equivalent.)

Because my daughter and her partner live upstairs, I was assessed as not needing help with the yard, because there are other able-bodied adults who could do the work.  If they weren't there, more help could have been provided for yard work as well.

There's a basic lesson here.

Managing with lupus can be hard.  It can be challenging, and just trying to do everyday things can be overwhelming. But you don't have to assume you have to do everything alone.

It's worth investigating what help is available in your area.  If you don't know where else to start looking, ask your GP what she (or he) can suggest.

Remember, you may not get approved for everything, but you won't get approved for anything if you never apply.  Ask, and you might just get the help you need.  

Further information:

Centrelink Carer Payment:

Queensland Government Community Care Services:

Thursday, 3 December 2015

Once Upon A Time

Yes, these really are my taekwondo medals.
(Taekwondo ended for me about the  time I needed
a hysterectomy for unexplained symptoms.)
There was a time, before I was diagnosed, when I had enough stamina for an hour and a half training session.

There was a time, before steroids, when I didn't weigh twice my healthy weight.

There was a time, when cooking a meal didn't leave me exhausted.

There was a time when my shoulders (and hips) were right and left, not good and bad.

There was a time when I could not only work full time, but also be involved in sporting and community activities after work.

There was a time when I could drive for hours on end, without needing rest breaks.

There was a time when I could go shopping without ending up exhausted and in agony.

There was a time when I could deal with hot days without starting out completely exhausted.

There was a time when I could deal with cold days without all of my joints being in absolute agony.

There was a time when I donated blood, and didn't just have it constantly taken for tests.

There was a time when I could start writing something and get to the end and still remember what the point of what I was writing was...

Um sorry. I think this was meant to go somewhere, but brain fog.

Wednesday, 2 December 2015

Bloody Tests!

I had my blood tests today.  It's a normal thing I do quite regularly.

I do it so often, I know which is my best vein.

Hardly anyone has ever found a vein in my left arm, so I always present my right.  (Even though it's my dominant arm, and the one I use to hold the walking stick, so it's guaranteed to bruise.)

It took the phlebotomist a while to find the vein - the good vein.

I looked where she was working, and realised, I can actually see some little pinprick scars from previous needles.

According to the phlebotomist, my "good" vein isn't really very good at all any more.

I still have nightmares about all the years I used to give blood, before anyone worked out that there were better veins in my dominant arm.  It was awful, taking three or four goes and a couple of changes of blood taker before the blood flow actually started, and then often it would stop flowing before the bag was full.

So here we go lupies, give me advice.

How do I get my veins to be more accessible?

Do I drink a couple of litres of water before the test?

Do I put hot or cold packs on my arm before the test?

Do I stand on my head for half an hour? (Actually, forget that, I physically can't do it.)

How do you get big, strong, full veins for tests?

(Or am I the only one who ever has this problem?)