Thursday, 30 June 2011

Looking for energy to burn - Weight Loss week 4

I gained weight this week.

Two things caused this to happen.

The first is that I didn't keep track of what I was eating. I simply counted on being able to tell when I'd had enough to eat. That fell down because of the second thing.

I was tired on a couple of days. When I'm tired, I have a very bad habit of eating, to try to give myself an energy boost. The only way to deal with the fatigue that comes from lupus is to stop everything and sleep. Eating extra can cause a tiny energy boost, but it leads to a crash further on. When there's things I absolutely have to do, or that I really want to do, I use food (or caffeine, or both) to give me that little bit longer before I run out of energy all together.

Some people with lupus have anorexia, either as a part of their condition or in response to their medications. (I'm on some of the medications that can cause anorexia - but also on medications that can cause weight gain.) There are times I wish I had anorexia as a symptom, but of course that would lead to a whole lot of other problems!

Tuesday, 28 June 2011


One of the odd things about lupus is that body temperature is hard to manage.

When everyone else is cold - I am hot. When everyone else is hot - I'm cold. I have my own climate zone. I need to always know where my jacket and gloves are, and then have the air-conditioner ready to make it cool enough to sleep at night.

It makes it hard to agree with the kids on what temperature to set the air-conditioner in the car.

When I'm quite well, my personal temperature does not seem to be much different from everyone else's but when I'm fatigued or in pain, I'm always at a different temperature to everyone around.

Friday, 24 June 2011

Everyone's an Expert

I'm sitting with my morning coffee, planning out my day. It's a housework day today - and I'm trying to assess which tasks are most important, and which I have sufficient energy for. I'm making a note of which joints are hurting (shoulders and left wrist) and planning out how to do tasks with the least possible stress on those joints.

My morning coffee and planning time is an important part of my day - without it - I tend to just get into things, and collapse in a heap when I run out of steam.

Much as I love my coffee, it has been suggested to me that I should give it up - that maybe I could cure my lupus by not having coffee.  In fact, I've been given all sorts of "cures" by all sorts of  people. Here's some of the best:

"My daughter cured lupus by giving up coffee" - lady at the gym (that's a sacrifice I'm not willing to make)
"I had lupus once, but it was just stress" - my half sister
"You're just really lazy" - my ex-husband (to be fair to him, we didn't know what was making me so tired then)
"It's just one of those things" - one of my past doctors who gave up trying to find out what was wrong
"It's one of the joys of being a woman" - another past (male) doctor with reference to my gynaecological issues
"Try not having your nap, see if you're less tired" - the doctor assessing my temporary retirement from work
"It's never lupus" - more people than you could imagine, quoting TV's "House" (The kids and I used to watch House, just waiting for the suggestion that it could be lupus.)
"You need something to boost your immune system" - naturopath at the local chemist - seems counter-intuitive when my specialist keeps giving me stuff to slow down a hyperactive immune system
"Are you sure you need all those pills?" - a nurse (yes, those are the pills my GP and my specialist tell me to take - and they keep in contact with each other about them.)
"Maybe you're just allergic to your pets" - someone who doesn't like pets

I've been told I need to do more, relax more, eat more, eat less, give up coffee, exercise more, exercise less, just get over it because it's all in my head (in blood tests, too, strangely).

I'm so grateful for the wonderful friends I have who don't try to solve the problem, they just accept me as I am, with my limitations. And if we're out and I say I need to sit down, it's coffee break time, and no-one says  I can't have my coffee!

Thursday, 23 June 2011

The Energy Budget

One of the best ways to explain what the fatigue issues with lupus is like is with the "Spoon Story" on  but I've recently realised another way to explain it, that might make more sense to some people.

Everyone has a certain amount of energy for each day. Someone with lupus generally has a bit less than most other people do. The energy we do have, we have to budget, in the same way as we have to budget our money.

We have to decide what in the day is worth spending energy on, and where we can save a bit, so we've got it when we need it.  It's possible to keep a little bit in reserve at the end of the day, so as to start the next day with just that little bit extra.

With your money, if you decide to set an amount aside for eating out, you could use it in little bits and have lots of trips to a fast food place, or you could save it all for one special outing to a high-class restaurant.  It's the same with energy, you could spend it in little bits here and there, or save for something special.

It's also possible to push past the limit, to put just a little bit on the credit card.  Like money, the energy credit card comes at a cost - suddenly the day comes when you have to pay it all back with interest. That's not pretty. Eventually, if you're broke, you're broke. With money that's a problem. With energy, it's also a problem. For a lupus patient, being "broke" in terms of energy, can mean several days of not being able to get out of bed, of functioning at only the most basic of levels.

With careful budgeting, someone with lupus can do anything anyone else can do: we just can't do everything everyone else can do.

Changing habits - weight loss week 3

I was surprised I lost weight this week! There was a family crisis, and in the midst of trips to and from hospital, missed sleep, etc, I didn't keep track of what I was eating. I still lost 0.8kg.

What happened? Well, something quite amazing. All of my thin friends know when they're hungry, and when they've had enough to eat. I've never been good at that.

I realized the other day, that I do know when I've had enough to eat. I was at McDonalds. (It's next door to my son's school, so I go there for a coffee and read the newspaper while I wait for him on the days I need to pick him up.) I hadn't had afternoon tea, and they had gluten-free friands, so I bought one to go with my McCafe coffee. About half-way through eating it I realised two things: firstly I wasn't enjoying it and secondly I wasn't hungry anyway. I put down the fork and left the rest of the cake.

Since then, I've been able to tell when I've had enough to eat and to stop eating. Sometimes that means "wasting food" ie throwing out some of what I had on my plate. As a kid I would have been in endless trouble for "wasting food" - the same parents who always picked on me for being fat would have been outraged if I didn't finish everything on my plate! (Food was hard to come by after all.)

I'm very excited about this new skill. It leaves me some hope that a day will come when I don't have to constantly count calories, and watch every mouthful of food.

Of course, habits are hard to change - and going back can be quite easy. I suspect that if I over-ate a few times, I could easily lose the ability to tell when I've had enough.

Saturday, 18 June 2011

Energy Conservation

My doctor's told me I've been doing too much and need to rest more. I have to go back to some of the things I was doing to save energy when I was really sick.

Here are my top 20 (personal) energy conservation tips:
Unfortunately some of them increase living expenses - but sometimes it's necessary to face the extra financial cost.

1. Hire a cleaner to do the heavy work (like vacuuming, cleaning the bathroom, etc).
2. Hire someone to mow the lawn.
3. Don't hang clothes outside - stuff that can hang up easily on hangers, hang in the laundry near the washing machine, big things like towels and sheets just go through the dryer. (Bonus points: hanging clothes on hangers means they're easier to iron and some don't need ironing at all.)
4. Shop online where possible. It involves a delivery fee for on-line supermarkets, but it means less time on your feet in the aisles.  (I actually find I save money this way, despite the delivery fee, because I only order what's on my grocery list, I'm not seeing other things on the shelves and thinking "oh we might want that").
5. Delegate. The kids can wash the dog, and teenagers can learn to wash their own clothes if no-one else does it for them.
6. Where possible, buy clothes that don't need ironing.
7. Exercise: gentle yoga or similar at home can help keep joints moving, without the effort and cost of driving or walking to a gym.
8. If someone else is going to the same place, ask them to drive. (Even if they drive your car.) Only drive when you absolutely must.
9. Cook extra: when you cook, double the recipe, and put extra serves in the fridge or freezer. It takes less effort to cook more at the same time, than to cook the same thing twice.
10: Double-up. If you must go to a shopping centre, go to one that has a carwash, and book the car in for cleaning at the same time. Two things done in the one trip, with no extra effort.
11. Get a hairstyle that doesn't take work. Wash it and wear it. Don't blow-dry, style, straighten or curl.
12. Sort medications into a dispenser once per week, rather than daily.
13. Give benches, stovetops, etc a quick wipe over while doing the dishes - to keep everything relatively clean between visits from the cleaner.
14. If there's a gadget or electrical device that can do the job, use that instead of doing it manually. (Use electric beaters instead of a whisk, a mixer with a dough hook instead of kneading dough. If you are fortunate enough to have a dishwasher - use it - I certainly would if I had one.)
15. Ask for help. This is one I find hard to do, even though I often need help. People are frequently more helpful than we expect if we ask. This morning, I bought meat in bulk (cheaper, and cuts the number of times I have to go to
 the butcher), and the butcher carried my purchases to the car for me.
16. Learn not to see the dust, stuff not put away, etc.
17. De-clutter, give things to Lifeline. The less stuff you have, the less you have to take care of.
18. Have friends come for coffee, instead of going out to meet them.
19. Do whatever it takes to have good-quality sleep, put the airconditioner on full blast, whatever.
20. Accept that not everything's going to get done.

Friday, 17 June 2011

Government Conspiracy!

Well, I'm not going to comment on the ads that appear on this site too often. In fact, I haven't even looked at where most of those links go. But one that does appear frequently is worth a second look: it's the Australian Government's site.

Why does this one deserve another look?

It's part of a secret government conspiracy. (OK not-so-secret, even I know about it.) Someone in the government believes that if they can get Australians to eat healthy food and exercise more, we'll have less "lifestyle" diseases - those forms of diabetes, heart disease, cancer, etc caused by the way we live our lives. And here's where the payoff for the government is - that means it would take less money to maintain our health system, or the same money could be used more efficiently and we'd have shorter waiting lists.

I'm not big on governments interfering in our private lives - but I think this is one scheme we should all buy into: because we all benefit personally.  Firstly, our taxes pay for that health system, so we have an interest in getting the best possible use for our money. Secondly, I don't think any of us want to have a preventable disease. (I find I'm miserable enough with the disease I have - and I haven't done anything to feel I deserve it. It would be terrible to think I had caused being sick.)

So let's all get patriotic on this one: support our government's plan. Let's eat our veggies and get off our butts - for Australia (and to protect our own hides.)

Thursday, 16 June 2011

Life online

One of the problems with having lupus is limited energy. If you want a wonderful explanation of what the energy limit of lupus is right, read the "spoon story", at . I couldn't explain it any better.

Since I've started working again, my limited amount of energy has to go further than it did before. This takes its toll on things like housework, family, friendships. There's less of me to go around. That is not a complaint - I love my work - I would do it without pay if I had a way to support myself.

The internet is proving to be incredibly useful. I can buy my groceries online if I don't have the energy to walk around the supermarket, and I'm learning that I can find just about anything else I need online as well. I just have to be willing to wait for delivery.

I love to get together for coffee with friends - but again it takes energy. Sometimes email and facebook are the next best thing. It's not a great substitute for actually spending time together - but it does allow me to maintain friendships even on the days (or weeks), I don't have the energy to do anything but lie on the couch.

Wednesday, 15 June 2011


I was sorting my medications for the week, and thought perhaps people might like to know what kinds of medications Lupus patients need to take.

This is my current cocktail - it's been tweaked a bit over the time.

Fish Oil - my rheumatologist just increased this to 10 capsules per day (someone joked the oil was to lubricate all those stiff joints)
Glucosamine - I think it's ground up seashells or something similar, also supposed to be good for arthritis.
Panadol Osteo - like regular paracetamol, only stronger and longer-lasting
Prednisolone - a steroid, to reduce inflammation, and slow down the immune system. I've had doses as high as 25mg per day, and am happy to be down to 2mg.
Zanidip - to lower blood pressure (my blood pressure was fine until I started taking steroids)
Plaquenil - actually an antimalarial, but helps with lupus as well
Lovan - usually an antidepressant, given to me as a weight loss drug
Methotrexate - in cancer patients, this is given in frequent high doses over a short time and called chemotherapy. In Lupus patients, it's given in weekly, low doses, over a long period of time and called an immunosuppressant.
Folate - to replace what the methotrexate leaches out of the system.
Vitamin D - because you're supposed to get it from sunlight, but sunlight doesn't agree with lupus patients.
Antihistamine - because even with all the other drugs supposed to slow down immune system reactions, I still get allergic rhinitis!
Polygel - goo for permanently dry eyes. (At least I don't get the dry mouth some lupus patients have - I'd hate to be using artificial saliva!)
Asthma puffer - actually hardly used this since starting prednisolone.
Movalis - non-steroidal anti-inflammatory
Lasix - diuretic, just occasionally, because sometimes all the other drugs can cause my body to retain enough fluid to cause severe headaches.

That's my list. Other lupus patients will have different lists, especially people who have more severe lupus. (Mine is very mild - even if I have had two years off work because of it. At a Lupus Australia drop in morning, I met a man whose first symptom was heart failure - that's severe lupus.)

Because Lupus can attack any organ of the body, lupus patients can suffer from a huge variety of symptoms, and many will have to take medication targeted specifically for the organ that is under attack.

Usually, I pack my drugs into a dispenser box, sorted by day and time. When I went on an overseas cruise a couple of years ago, I had to take everything in its original package, with the prescription label. I took an extra bag for my medication.

Tuesday, 14 June 2011

Sneaky Supermarket!!!!

Well, now I've seen everything in sneaky marketing!

The standard advice for people losing weight is "shop around the outside of the supermarket" because that's where fresh produce, bread, milk, all the basic, healthy foods are. (I have to add in the health food isle for my gluten-free flour, etc and bread substitutes, but basically it holds true.) The same advice goes for people who need to save money - the fresh, healthy food, is usually the most cost-effective.

Not Any More!!!! 

The supermarkets are wise to us now!

I shopped at Woolworths at Indooroopilly (Brisbane) last week, and one whole outside wall was covered in shelves of confectionery! The healthy food was inside, and the junk out.

That quick run around the supermarket, just getting the essentials from the outer area, has become running the gauntlet of all the stuff that made us fat in the first place, so we can find the healthy things we need.

Monday, 13 June 2011

Ice skating, aches and bruises.

I know I'm probably insane, but I went ice-skating with the family yesterday.

The last time we went, was while I was really sick. I'd stayed in the warmth of the coffee shop, while the others skated, and they came to "visit" me from time to time.

This time, I actually got out on the ice.

I have to confess that I was a "wall hugger" even before the arthritis. Now, I'm even worse. I did slip over one time, and caught the wall to stop myself falling, bruising my arm and hurting my shoulder and wrist joints. (So much better than hitting the ice and hurting my butt and hips, right?)

I also twisted my ankle - not on the ice, but by tripping over on my way to the ice.

My big lesson from the day is that as soon as I start to feel I need a rest, that's when I should stop all together, and go back to the coffee shop for the rest of the day. I should not stop for a ten minute break and then start again. I got home at about 4pm - collapsed on the couch and woke up again at 9am this morning.
I'm still tired, and my ankles, hips, shoulder and wrist are killing me!

I need to find some balance in what I do. I shouldn't have to feel "left out" of everything my family and friends do. On the other hand, I have to learn what my limits are. I also have to be sensible about exercise: with arthritis, a bit of exercise is good, too much is a problem!

Sunday, 12 June 2011

Money matters

Another of those side issues that comes with chronic illness, is the issue of finances.

Dropping from full-time work to a pension (and now part-time work and part-pension) puts an interesting strain on the budget! 

If you're really needing to save money, check out . This site has a great set of hints and tips, and they have a free email newsletter if you're interested.  The same person has a book called Debt free, cashed up and laughing which has a lot of the same hints as the website, but in a form you can read more comfortably if you still like to hold actual paper!

I can personally recommend their home-made washing powder - it's cheap and it works. You do need to have a food processor to make it. (At the moment, I'm without a food processor as such, having killed the old one with my gluten-free bread dough.)

I'll add my favourite money-saving hints to this blog, under the "money" category.

Changing habits - weight loss week 2

OK - on second week of the weight loss program, and the task for the week is to keep an "awareness journal". That means instead of just tracking what I eat and how much, I'm also recording why I'm eating, whether I'm hungry or not - how full or otherwise I am after I've eaten. The idea is to show my habits, when I eat unnecessarily.
Actually, I already know. Like most other people, my binge danger time is afternoon and evening. I also have a "boredom" issue - not that I'm actually bored, but when I'm not working on a specific task, I tend to nibble. So I need to keep my "to do" list populated, so I always know what I'm doing next, and don't have to stop and think about it!
Last week I lost a kilo, so all good.

Sunday, 5 June 2011

Changing habits - weight loss week 1

I need to lose weight - it's important. I'm about 30kg heavier than I should be, and my arthritic joints just don't like carrying the excess.

Like everyone else, I know exactly how to lose weight: eat less, exercise more.

And like most other overweight people, I find it hard to translate what I know I ought to be doing into practice.

I've done Weight Watchers, and been successful - but both times I reached goal with WW, I maintained my weight until I got pregnant. 

This time around, I just don't have the energy to maintain that kind of self-control. I used to be able to do something just because I'd decided I was going to. (It's actually a basic part of my personality.) But so much has happened in my life, so much so totally out of my control, that I just don't have that kind of willpower any more.

If I can't manage to stick to a complete diet and exercise program, what can I do to deal with my weight problem? I think the big thing is to make long term changes, find a habit that has contributed to my weight gain, and try to change just that one habit for one that is healthier. When I'm confident that I've really got that happening well, I can go on to changing another habit.

So for my first weight loss goal, I've identified that one of my worst habits is bingeing from lunch to dinner time. My attempt to deal with that is to substitute a planned afternoon tea: I'm going to have a piece of fresh fruit and a serve of low-fat dairy food (yoghurt, hot chocolate made on skim milk, etc). I'm going to sit at a table, and make a point of enjoying my afternoon tea. The fruit will provide fibre and carbohydrate, the dairy food will provide protien, so in theory, this should help me to feel full (or at least not starving) and give me sufficient energy for the afternoon.

Wednesday, 1 June 2011

Energy and fatigue

I am so pleased with myself.

Yesterday, I did heaps of housework. OK, when I say "heaps" I mean: I washed and hung out the clothes (my son brought them in); I did the dishes; I mopped the kitchen and laundry floors; I baked scones for the oldies' group at church, and I cooked dinner. For me that's heaps - bearing in mind that I also managed to fit in a 2 hour nap during the day.

Today, I did a full eight hour day at work. I managed my lunch and nap all in about an hour at the middle of the day, and got lots done.

I'm tired (surprise!) but I'm not oh-no-I-just-can't-do-anything-at-all tired. I'll still have the energy to get my shower before bed. (My daughter "cooked" dinner tonight - it involved the internet and a discount voucher from a Dominos - using a stove is so old-fashioned.)

I feel so good, that I've done so much in these past couple of days. Now, my problem will be not to assume I can always do this much. I need to conserve energy - always do that little bit less than the maximum I can - because when I live right on the limit and do the maximum all the time I quickly run out of energy and get sick.  It's all a balancing act.

But for now, I'm really thrilled with how much I've achieved!