Monday, 22 February 2016

When I'm Not In Your Computer

Image: pictures of a sewing project. Text "hobbies give me something to do with my time, and help me keep my brain functioning. Sometimes, they are useful as well.I haven't been on line much these past couple of weeks.

Where have I been?  I've been visiting the real world.  Yes, me, the woman who lives inside your computer and never does anything except talk about being sick. I've been doing things.  Without you. Away from your computer.

A couple of weeks ago I told you I was starting to see signs that I was coming out of a flare.  It hasn't all been plain sailing since then, there have been a couple of backward steps,  but mostly, I've been on a trajectory that sees me getting better bit-by-bit.

So what do I do when I'm not in your computer?

Well, as my energy has improved, I've been able to get out more.  I've actually made it to church the past couple of weeks, which has been wonderful.  Not being able to get there was one of the things that really gave me a sense of loss.

I missed a few Writers' Circle meetings while I was struggling, but I think I'm back into the swing of that now.  And I've joined Toastmasters (yes, the public speaking organisation.)  I don't know that I felt any real need of joining a public speaking group per se, but I did want to meet people, and speaking is one of those things that don't take a lot of physical effort or strength.

I made "Hello Kitty" clothes for my granddaughter,
and her doll, and my dog.  
I have also been sewing.  I made a heap of outfits from "Hello Kitty" fabric for my granddaughter, thinking I was making daycare clothes.  She's decided they're all pyjamas, special ones that help her have nice dreams about cats.  (Can't argue with 2-year-old logic.)

Now I've started on doing some things for myself.   It's actually possible to buy clothes for less than the cost of fabric, but those are the kind of cheap clothes that don't last and are made by people in sweat shops that have nets outside the windows to catch workers attempting suicide because that's cheaper than making working conditions bearable.

I'm avoiding one of my favourite hobbies - baking - because, as you know, I'm struggling to lose weight despite taking prednisone.

I haven't got out the paints and brushes yet, but I have rearranged the studio so it's a bit more practical for both sewing and art (as well as writing.)

Well that's me.  I wonder what you do when you feel well.  How you walk the fine line between being that bit more well, and over-doing it and being sick.

Living with a chronic illness, it's just far too easy to fall into depression, to give up on life.  So it's important to do something fulfilling with the good days.

If you haven't thought about it, or haven't yet had a good enough day to try something more than just survive,  here's some ideas about what makes a good hobby for a person with a chronic illness.

  • Does it take into account what you are able to do?
  • Do you feel good while doing or after doing the activity?
  • Can it help you feel "useful", or give you a sense of achievement?
  • Can you leave it for later if it starts to get too much?
  • Does it let you enjoy something you love?  
  • If like me, you need to lose weight, does it distract you from eating or thinking about food?
  • Does it give you a chance to get to know nice people?
  • Does it involve people you already like or love?
  • Does it engage your mind, and help clear away the fog?

On the other side of the coin, here's some ideas for not-so-good hobbies for someone with a chronic illness.
  • Does it push you beyond what know you can do?
  • Does it remind you of having lost something you really loved to do, but can't now?
  • Does it make a huge mess that you'll be too sick to clean up, which will just make you feel guilty and miserable?
  • Does it leave you with the feeling that you've done nothing worthwhile, and you may as well have just stayed on the couch?
  • Does it mean you absolutely must meet deadlines, even if you have a few bad days?
Whatever you do on your good days,  I hope you find it fulfilling, and I hope and pray you have lots of good days to enjoy.


Image: variety of ginger-bread men.  Text: This year, Sometimes, it is Lupus is celebrating World Lupus Day throughout May. To find out how you can take part and share your unique story of life with lupus, go to www.sometimesitislupus.com



Want to be part of the World Lupus Day activities at Sometimes, it is Lupus?




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Monday, 15 February 2016

Ask an Expert: Six Tips For Losing Weight Without Fad Diets

Those of us taking steriods often struggle  to lose weight (or even to stop gaining weight), let's revisit the basics of weight control with an expert in the field of food.

The following post, by Clare Collins, Professor in Nutrition and Dietetics, University of Newcastle has been republished from The Conversation.  See the original version here:  https://theconversation.com/health-check-six-tips-for-losing-weight-without-fad-diets-52496



Health Check: six tips for losing weight without fad diets
  Clare Collins,
University of Newcastle

Monday – start diet. Tuesday – break diet! Wednesday – plan to start again next Monday.

If this is you, it’s probably time to get off the diet roller coaster and make some bigger changes to the way you eat, drink and think about food.

Here are six tips to help you get started.

1. Improve your diet quality score

When trying to lose weight, it might be tempting to quit carbs, dairy or another food group altogether.
But to stay healthy, you need to meet your requirements for important nutrients like iron, zinc, calcium, vitamins B and C, folate and fibre. These nutrients are essential for metabolism, growth, repair and fighting disease.

Our review of diet quality indexes used to rate the healthiness of eating habits found that eating nutritious foods was associated with lower weight gain over time.

Improving your diet quality means eating more fruit and vegetables, lean meats, poultry, fish, eggs, tofu, nuts and seeds, legumes, dried beans, wholegrains and dairy (mostly reduced fat).

Rate your diet quality and get brief feedback using our online Healthy Eating Quiz www.healthyeatingquiz.com.au.

2. Mum was right – eat your veggies

Fruit and veg are high in fibre, vitamins and phytonutrients, but low in total kilojoules. So eating more can help you manage your weight.

A study of more than 130,000 adults found that those who increased their intake of fruit and vegetables over four years lost weight. For each extra daily serve of vegetables, there was a weight loss of 110 grams over the four years. It was 240 grams for fruit. Small, but it all adds up.




Not all vegetables are equal. Michigan Municipal League/Flickr, CC BY-NC-ND

Drilling down to specific fruit and veg gets interesting. Increasing cauliflower intake was associated with a four-year weight reduction of about 620 grams, with smaller reductions for capsicum (350g), green leafy vegetables (230g) and carrots (180g). The reduction was 620g for blueberries and 500g for apple or pears.

It was not good news all round, though. Corn was associated with a weight gain of 920g, peas 510g and mashed, baked or boiled potatoes 330g.

3. Limit your portion size

If you are served larger portions of food and drinks, you eat more and consume more kilojoules. That sounds obvious, yet everybody gets caught out when offered big portions – even when you’re determined to stop when you’re full.

Research shows offering larger portions leads adults and children to consume an extra 600 to 950 kilojoules (150-230 calories). This is enough to account for a weight gain of more than seven kilograms a year, if the kilojoules aren’t compensated for by doing more exercise or eating less later.

4. Watch what you drink

A can of softdrink contains about 600 kilojoules (150 calories). It takes 30-45 minutes to walk those kilojoules off, depending on your size and speed.

Children and adolescents who usually drink a lot sugary drinks are 55% more likely to be overweight.
Switch to lower sugar versions, water or diet drinks. A meta-analysis of intervention studies (ranging from ten weeks to eight months) found that adults who switched had a weight reduction of about 800 grams.

5. Cue food

Our world constantly cues us to eat and drink. Think food ads, vending machines and chocolate bars when trying to pay for petrol or groceries. Food cues trigger cravings, prompt eating, predict weight gain and are hard to resist. They can make you feel hungry even if you are not.




Ditch the oily popcorn and take your own snacks. rpb1001/Flickr, CC BY-NC

Try to minimise the time you spend in highly cued food environments. Avoid food courts, take a list when you go to the supermarket and take your own snacks to places where highly palatable food is advertised, like the movies.

This will reduce autopilot eating, which sabotages your willpower.

6. Resist temptation

A treatment for food cue reactivity is called exposure therapy. With the help of a psychologist or health professional, you expose yourself to the sight and smell of favourite foods in locations that commonly trigger overeating, like eating chocolate when watching TV. But, rather than eat the chocolate, you only have a taste without eating it.

Over time, and with persistence, cravings for chocolate reduce, even when cues such as TV ads or people eating chocolate in front of you are present.

You can also draw on your brain’s own self-management skills to resist temptation, but it takes conscious practice. Try this food cue acronym, RROAR (remind, resist, organised alternative, remember and/or reward), to train your brain to resist temptation on autopilot.

When you feel yourself pulled by cues to eat or drink:
  • Remind yourself that you are the boss of you, not a food cue.
  • Resist the tempting food or drink initially by turning your back on the cue. (This gives you time to think about next steps.)
  • Have a pre-Organised Alternative behaviour to use against food cues. Grab a drink of water, walk around the block, check your phone messages, read, take a walk in the opposite direction. Diversion works.
  • Remember what your big-picture goal is. Do you want to eat better to help you feel better, reduce medications, lower blood pressure, improve diabetes control or manage your weight?
You can add another R for Reward. Financial incentives help change behaviour. Each time you complete your organised alternative behaviour put $1 in a jar. When it builds up, spend it on something you really want.




Swap to small plates to reduce your portion sizes. Robert S. Donovan/Flickr, CC BY-NC

You need a plan

The journey off the diet roller coaster needs a cunning plan. Here’s how you can put it all together.
  1. Start by assessing your diet quality using the Healthy Eating Quiz.
  2. Next, plan weekly meals, drinks and snacks. Write a grocery list and buy extra fruit and vegetables.
  3. Swap to small plates, cups and serving utensils. You’ll serve and eat less without thinking.
  4. Aim for half your plate covered with vegetables and salad, one-quarter lean protein (trimmed meat, chicken, fish, legumes) and one-quarter grains or starchy vegetables (potato, peas, corn).
  5. Change your food environment to avoid constant prompts to eat.
  6. Minimise the places you allow yourself to eat and drink to reduce food cue exposure (not in front of TV or computer, at a desk, or in the car).
  7. Keep food out of sight (unless it is fruit and vegetables). Store in opaque containers.
  8. Remove workplace food displays, such as food fundraisers.
  9. Plan driving and walking routes that do not take you past fast-food outlets or vending machines.
  10. Prerecord TV shows and fast-forward food ads.
The Conversation
Clare Collins, Professor in Nutrition and Dietetics, University of Newcastle
This article was originally published on The Conversation. Read the original article.

Saturday, 13 February 2016

The Further Adventures of Lupie in the Fog

Image: pink flower. Text: Life's always an adventure with brain fog.I'm flaring again.  I don't even need to look in the mirror to know the rash is up on my face, I can feel it burning.

For me, a flare always means brain fog.

So I have a few very important questions to ask (if you know the answers, please tell me.)


  • I was using a pen 30 seconds ago.  Does anyone know where it went?
  • What day of the week is this?
  • Have I eaten yet today?  (My poor son gets this question all the time.)
  • Have I taken my pills?
  • I had to get money out of the bank, but I don't remember how much or what for. Any ideas?
  • Does anyone know why the dog is looking at me expectantly?
  • I can't manage math today.  Will someone else please pay my bills?



Image: gingerbread men.  Text: This year, Sometimes, it is Lupus is celebrating World Lupus Day throught May.  To find out how you can take part, and share your unique story with lupus, go to www.sometimesitislupus.com


Don't Forget
I may be forgetting everything, but please don't you forget to be part of the Sometimes, it is Lupus World Lupus Day activities.






Wednesday, 3 February 2016

Crossing The Line

Image: yellow marigold.  Text: I wish I could actually see the fine line between doing things and overdoing things.There is a fine, very fine, microscopic even, line between doing things when I feel fairly well, and over-doing things and making myself unwell again.  I may have crossed the line a little.  Hopefully, only a little and I will get back on track after a day or two of rest.

What did I do wrong?  I broke my own rule of only doing one "big" thing a day.  For me a "big" thing is pretty much anything I have to leave the house for.

On Monday,  I walked my dog (one "big" thing), and because I was feeling quite good, and because she was really having a great time, we went quite a bit further than usual.  We must have been out at least 15 or 20 minutes.

Then I went to my first ever Toastmasters' meeting.  (Well, feeling relatively well made it a good time to further my plans to get out and meet people, but this was a second "big" thing.) From there, I went to coffee with some of the Toastmasters' members ("big" thing number three).

When I came home I crashed.  It was a very long sleep, and I still didn't feel quite right.

On Tuesday,  I had a Writers' Circle meeting.  Which I went to, and thoroughly enjoyed.

For my dog's exercise, we played our version of fetch.  It involves her running around madly with a squeaky toy for five or ten minutes, letting me get the toy to throw, lolloping off after it with a dumb grin, running around with it for another five or ten minutes before I throw it again.  It's good, she gets half an hour's cardio, while I only have to throw a squeaky toy three times.

By Tuesday afternoon, I had taken extra pain pills, and my son suggested that for our grocery day (Wednesday/today) maybe we should just order on-line to have our groceries delivered, instead of me going out again. I assured him I would be fine, after all I do seem to be just about over this flare.

This morning?  I got up, ordered the groceries on-line, and the dog and I went back to bed.  My son graciously refrained from saying he told me so.

If anyone's looking for me today, if I happen to actually be awake, I'll be in the studio, writing or sewing, anything that's relaxing and doesn't take any real physical effort. Oh, and at some stage, I'll probably toss a squeaky dog toy down the hallway a couple of times (at least one of us should get some exercise.)