Showing posts with label symptoms. Show all posts
Showing posts with label symptoms. Show all posts

Wednesday, 18 July 2022

The Horrifying Truth

It was a freezing cold morning, and I was lying in my nice warm bed, waiting for the coffee my son had offered to bring me.

He was taking an unusually long time, and I thought back to our conversation.

As well as offering me coffee, he'd asked me to cut his hair (he hasn't had his hair cut in about 12 years) and talked about the upcoming taekwando competition (neither of us has done taekwando since before his last haircut.)

The whole conversation had been an hallucination, or possibly a dream.

That's when the horrifying truth hit me. There was no coffee being made!

Tuesday, 12 June 2022

Utterly Exhausted

Image: sleeping kitten.
Utterly exhausted.
I'm utterly exhausted!

Usually I have energy in winter - it's summer that wipes me out.

This winter's the exception.  I'm sleeping all night and most of the day.

Even when I'm awake I'm struggling to stay that way.

What's different this winter?  I don't know.  Maybe it's the emotional strain of all the losses I've experienced lately (in less than three years, my best friend from high school and her mother have both died, my father died, my brother died, and lastly my beautiful cat died. Oh, the kitten in the picture is new, not the cat who died.)

Maybe it's the strain of a heap of unexpected financial pressures. (From a neighbour complaining that my trees need to be cut down, to the air conditioner and washing machine needing repairs, to endless other small and large niggling financial pressures.) Being sick is itself an expense, and not being able to work limits my income.

I'm assuming it's emotional strain that's causing the fatigue, because to be honest, I haven't done anything physical in ages, so it can't be physical fatigue.

Maybe it's just lupus being lupus and doing the unexpected. Winter is time for aches and pains - fatigue usually belongs in summer.  This winter, I'm getting the aches and pains, but also the fatigue.

Either way, I'm struggling to be awake.

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Monday, 9 April 2022

It's Complicated

Image: dog holding toy hotdog.  Text: "What can you eat?"  It's complicated.I received an email from a screenwriter who is writing a script which includes a character with lupus. One of the questions he asked me was: "What can you eat?"

Well that's a big question, isn't it?

What I can eat has changed several times over the years. None of those changes have increased the things I can eat, sadly.

So what can I eat?

  • Not dairy.  It used to just be no lactose, because lactose gives me reflux - nausea and heartburn, sometimes bad enough to be mistaken for heart attack.  Now it's no dairy at all, because even lactose-free dairy products are causing severe post-nasal drip.  If I eat dairy products, I end up choking on post-nasal drip.  Waking up in the middle of the night coughing and choking is most unpleasant.  I've decided I don't want to die by drowning on my own secretions.  If I did, I could end up as an urban legend like Bloody Mary - you know, you look in the mirror and say three times "Snotty Iris", and my ghost appears and drowns you in snot.  So, it's now a no on the dairy.
  • Not gluten.  Gluten upsets my gut - gives me irritable bowel syndrome - wild, unpredictable, swings between constipation and diarrhoea. It's most unpleasant, and can be very embarrassing.
  • Not much fat or alcohol.  Lupus has been messing with my liver for years.  My liver enzymes are always off at every blood test.  (Sometimes too high, sometimes too low, totally unpredictable.)  I need to be gentle on my liver.  So I eat low fat food mostly, and limit to alcohol to the occasional glass of wine at Christmas or a birthday.
  • Low GI carbohydrates.  This is the newest thing.  My pancreas is struggling, so my blood sugar is now not being properly regulated.  Yes, the name for that is diabetes.  (Because I didn't have enough health issues already.)  So now I have to be aware of the Glycaemic Index of the carbohydrates I eat, and not over-eat carbs in general.
What can I eat?  Well, it's complicated, and it gets more complicated all the time.

Related Posts: 

Saturday, 3 March 2022

The Funeral, the Flare, and the Feet

Just under a fortnight ago, my mother rang with horrible news. My younger brother had been killed in a horrible road accident.

I knew that the effort of travelling to the funeral would probably cause a flare, but if I didn't go, the stress and upset would probably cause a flare anyway. So of course I went.

Now, a little tip for pensioners travelling in Queensland.  Queensland Rail charged me $25 each way to travel from Brisbane to Rockhampton on the Tilt Train.  (You need your pension card when you book with them.) With a letter from my doctor saying I needed a carer with me, my son got his ticket free.

The actual trip involved about an hour on a city train to get from Ipswich to  Brisbane.  Then it was eight and a half hours on the travel train.

To help with the pain of sitting so long, I wore the portable tens machine attached to my hips and back the whole time.

I chose to stay at a hotel for the air-conditioning, instead of with family or friends. Because this trip was not planned ahead of time, with no time to save up, I could only afford two nights in the hotel.  So we arrived the night before the funeral,  stayed for the day of the funeral, and left the morning after.

By the time we arrived home, neither my mind nor my body wanted to function at all. To be fair my healthy son was in a similar state.

Two days later, however, he was back to normal, and I was sleeping on the couch all day.  I've been fatigued, in pain and brain-fogged for a week.

With this flare, something new is happening.  Not the crying, that's about my brother.  No, there's something weird happening with my feet.

When the rest of me is hot and pouring sweat (even in the air-conditioning), my feet are freezing cold.  I've been lying on the couch, under the air-conditioner with my feet wrapped in a blanket. Then occasionally I get horrible pains in the soles of my feet.

I suspect it's a circulatory problem.  One of the tests on my brain ages ago showed lupus had caused some vascular changes, so it's not beyond the realms of probability that the same thing is happening to my feet.

So I'm making sure I use the big tens machine at home each day - the one that does the base of the feet as well as having the electrodes for sore spots on the body.

My hope is this flare will burn out quickly, so I can get back to the exercise program the exercise physiologist worked out for me.  But all lupies know a flare will last as long as it lasts.

Tuesday, 13 February 2022

And this little lupie went wee, wee, wee

Let's talk about an embarrassing little issue that some lupies have.  Actually, I was afraid I might be the only one, but I've since found out there are others.

I've always had a little bit of stress incontinence, (advertisers now call it "light bladder leakage") ever since I had my kids, who are now both in their 20s.

Lately, it's been getting worse. More than that, I've been horrified to discover I've wet the bed a couple of times.

So, off to the GP.

Her first question: how much water do I drink?  Well, because I have a horrible problem with dry mouth, a lot.

Next question: do I still do pelvic floor exercises?  Yes, I do.

The options she gave me: a pill for the night time, but it would leave a dry mouth.  I balked at that because I have enough trouble with dry mouth as it is.

The next option was some surgery to correct the leaking when I sneeze or cough.  I've had more than my fair share of surgery, so I wasn't really enthusiastic about that either.

I opted to think about it and get back to her.

Back home, I started to think about her first question again.  Just how ridiculous an amount of water do I drink each day?  I decided to try setting a limit - not so little water I'd be in any danger of dehydration, but less than I've been guzzling.

I have been tracking how much water I drink - limiting it to about ten to twelve cups per day.  So far so good - no wet bed, and not even any little leaks with coughs or sneezes.

Of course, that leaves me struggling with my dry mouth. I'm sipping my allowance of water really slowly, and making a lot of use of moisturising mouthwash, mouth spray and gel. (The brand my local pharmacy has is Biotene, but there's probably other brands of the same thing out there.)

It's quite typical of living with lupus that anything I do to deal with one problem makes another worse. Hopefully, I've found a balance with this particular issue. 

Do other lovely lupies have this problem?  What have you found to help?

Tuesday, 5 September 2022

Review: Shade UV Light Sensor

The Shade UV light sensor.  It may not be
the most attractive piece of jewellery
you will ever wear, but I'm pretty sure it will
be your favourite - because it can help
prevent lupus flares.
There are lots of different things that can trigger a lupus flare.  For many, probably most, of us ultraviolet light is one of those things.

Sadly, ultraviolet light is one of those things it's almost impossible to avoid all together.

Biophysicist Emmanuel Dumont, PhD has developed a gadget that helps us control the amount of UV light we're exposed to.

(I've told you before my heroes wear lab coats.  Dr Dumont, and his team are definitely heroes for lupus patients.)

The Shade is a sensor which detects and measures the amount of ultraviolet light we're exposed to each day.

You simply download the mobile phone app, pair the device up with your mobile phone, and attach the Shade to your clothes.

It's held on with a magnet, so it won't leave pin damage in your clothes.  And this is a strong magnet, so even when a small grandchild jumped at me for a hug, it stayed firmly in place.

Each day, the phone app asks how you are feeling.  After a while you can look at your history - how much sunlight exposure you've had each day, along with how you felt, to work out your personal limit.  (Everyone's limit is different. Some lupies can handle more UV than others.)

Once your limit is set, the device will alert you when you've received 20% of your daily limit, or 40%, 60%, 80% and 100%.

As lupus changes all the time, you can change your limit if you notice the relationship between daily exposure and how you are feeling changes.

If you tell the device the SPF of your sunblock, it will take that into account in measuring your UV exposure.

The phone app gives you the option to talk to the Shade team when you have questions of problems. But really, the device and phone app are so easy to use, you probably won't need it.

You can find out more about the Shade, and how it was developed (and you can buy one) here

The Shade won't replace your hat, sunblock and everything else you do to protect yourself from too much sunlight.  But it will give you the freedom to know how much time you can safely spend outside, and a fair warning of when you are approaching your limit.

After a week of using it, I am totally in love with it.  It's not the most attractive piece of jewellery I wear, but it's definitely the most useful. It's a great feeling to know that I can safely enjoy being out in the garden for a while, and know I'm not going to overdo my sun exposure.

If I had a magic wand or multi millions of dollars, I'd provide one for every lupie on the planet. As I don't have the money or the wand, all I can do is encourage you to acquire one for yourself.

Now we just need something to help us control everything else that can trigger a flare....

Disclosure: this is not a paid post, however, I was provided with the device free of charge to enable the review.

Update: More on the Shade Sensor

Saturday, 5 August 2022

Realistic Pain Scale

Pain scale.
Do you ever find the pain scale used by medical practitioners is a little inadequate to describe what you are actually experiencing?

Pain Scale used by doctors and nurses:

"On a scale of zero to ten, with zero being no pain and ten being the worst pain imaginable, tell me what level of pain you are feeling now."

Realistic Pain Scale for Lupies:

  • Coma/general anaesthetic (How else could we have no pain?)
  • It's good.  (Pain level is low enough that I can convince everyone that I'm not in pain.)
  • I'm fine. (I can convince people who don't know me well I'm not in pain.)
  • It's OK. (I am still basically functional, but there's a limit to the function.)
  • It hurts a bit. (I want to scream, but I'm gritting my teeth and continuing on.)
  • Distracting. (I can't concentrate on anything, because the pain is overwhelming everything else.)
  • Exploding. (Intense pain in just one place.  Like a burst appendix, or childbirth with no pain relief and a great deal of cutting.)
  • Drawn and quartered. (Intense pain in multiple places.)
  • Hit by a bus. (Intense pain in all places.)
  • Dear God, please just let me die now! (Unbearable pain, and if you show me your smiley and grumpy face chart, I will hit you with it.)

Sunday, 11 June 2022

Never Take a Good Day for Granted

Image pink rose. Text Lupus life lesson #1 Never take a good day for granted.It's confession time.  I may not be quite as well as I've been telling you (and myself) lately.  With my effort at eating properly and exercising almost daily,  I don't seem to have the energy to do much else.  I'm not writing much, and I'm sleeping 12 to 14 hours a night.

What I have been feeling is less pain.  And less pain is good, extremely good.

So while I can I'm going to make the most of the low pain days.

I'm going to keep exercising, and I'm going to keep being a careful to try to eat properly.

You see, lupus has taught me a lot.  One of those things is that a good day is a rare and precious thing.  It should never be taken for granted.

So while the good days last, even if I end up going to bed at 5pm, I'm going to continue trying to get my health into the best possible state before my next flare.

I recently asked on Facebook what lessons other lupies had learned from lupus, a lot are things I have also learned. I'm going to share those over the next few days. Lupus has taught us all a great deal - mostly things none of us ever wanted to know.

Thursday, 20 April 2022

Out Of Order

I've been utterly useless for almost any purpose for at least a week now.

I've been sleeping at least 18 hours a day, and been exhausted for the time I've been awake.

I've missed things I wanted to do - I didn't get to church for Good Friday, or Easter Sunday.  Last night I was woken by a phone call - because I just hadn't turned up at a trivia night I had been going to with friends from my Toastmasters' Club.  (I completely forgot - and couldn't gather the energy to go if I'd remembered.)

I've moved from the bed to the couch and back, and done very little else.

Right now, I think it's time to stick an "Out of Order" sign on my head until further notice.

My brain's not functioning.  I've sent text messages to the wrong person, and been totally confused about basic things.

I regularly warn people how unreliable I am.  However, when they know functioning Iris, they don't really understand just how bad zombie lupie Iris can be, not until they meet me in this state.
My dog understands.

My dog, however, always understands. Whether I'm functioning properly or not, she's always happy to just be with me whether I'm doing things or just lying around.

Hopefully, in a few days, I'll start to get some energy back, because there's lots of things I'd rather do than just sleep all day.

Until then, I'm putting the tv on and lying on the couch.

Have you ever envisioned yourself as a patron of the arts, but don't have the money of a Medici? Patreon is the 21st century way of sponsoring artists of all types. You can be a patron of my writing for as little as $1 a month.  Patrons will receive electronic copies of each new book I write.

Tuesday, 18 April 2022

Give Aways - Lupus Care Packs

The contents of the lupus care packs.
A couple of weeks ago, I told you about lovely Corry Ang who brought lovely Lupus Care Packs to Lupus 2017.

It was an absolutely lovely gift for all of us.

I've received a message from Corry, who tells me you could have one if you like, too.

She has about fifty packs left over.

If you would like one, email your address to: or visit the her website for more information:

(Remember, Corry is in Australia.  I don't know if she is able to send overseas.)

Of course, if you know a lupie who really needs a lift, you could email their address to Corry as well.

Corry has put a lot work, time, money, and organisation into these beautiful packs, to show some love and support to the lupus community.

Have you ever envisioned yourself as a patron of the arts, but don't have the money of a Medici? Patreon is the 21st century way of sponsoring artists of all types. You can be a patron of my writing for as little as $1 a month.  Patrons will receive electronic copies of each new book I write.

Thursday, 13 April 2022

Dry Mouth is Not Just An Inconvenience

How's your mouth? Any ulcers, teeth hurting, dry feeling, always thirsty, just plain uncomfortable?

Dry mouth is annoying, and distracting, making it hard to concentrate on pretty much anything else, but it can cause serious issues too.

If you like having teeth, don't want infections,  of just don't like pain, you really need to do something about it. I treated it as just a nuisance, until I read a post about it by Dr Donald Thomas (the Rheumatologist who wrote The Lupus Encyclopaedia.) He made it more than clear that dry mouth is something we really need to treat seriously.

Now, I'm getting serious.  I talked to my dentist, and have gone from annual to twice-yearly dental check-ups.  I use a dry mouth toothpaste and mouthwash.  I also carry a dry mouth spray in my handbag, and keep a tube of dry mouth gel by my bed.  (The gel is squeezed on the tongue, and the tongue used to coat the mouth with goo.)

Specialist dry mouth toothpastes and mouthwashes are more expensive than the standard ones, of course. But on the other hand, I haven't had mouth ulcers since I started using them. I'm still bothered by the dry feeling in my mouth, but the pain isn't such a nuisance.

I tried using sugar-free gum for a while.  That does help with dry mouth, but there's a limit to how much I can use.  Sugar-free gum is sweetened with a product that acts as a laxative, and I already have gut issues.  So it's good, but needs to be used sparingly.

Have you ever envisioned yourself as a patron of the arts, but don't have the money of a Medici? I'm told Patreon is the 21st century way of sponsoring artists of all types. You can be a patron of my writing for as little as $1 a month.  Patrons will receive electronic copies of each new book I write.

Monday, 10 April 2022

Lupus Fatigue

You know what it's like, a healthy person complains of being tired, and you wish that "tired" could be a temporary thing for you, the way it is for them.

Chronic illness fatigue just isn't like any other kind of being tired.

It's more like Sisyphus would feel after an eternity of pushing a boulder up a mountain.  (Of course, according to the myth, he earned his punishment.  We didn't do anything to deserve this.)

We wake up tired and go to bed exhausted, and in between we fumble through life as best we can.

Sometimes, we manage to fight the fatigue and get things done.  But that usually catches up with us in the end.

Have you ever envisioned yourself as a patron of the arts, but don't have the money of a Medici? I'm told Patreon is the 21st century way of sponsoring artists of all types. You can be a patron of my writing for as little as $1 a month.  (Only if you can afford $1 a month.)  Patrons will receive electronic copies of each new book I write.

Thursday, 16 March 2022

Brain Fog in Action

This is what living with brain fog is like:

I cleaned my glasses. 

I didn't immediately put them on my face.

I don't know where I did put them.

I can't find my glasses.

I have to wear my spare glasses.

Why do I have spare glasses?

I bought glasses.

I lost them and couldn't find them.

I went back to the optometrist and bought another pair exactly the  same.

I got home and found the original pair.

Update: Found my missing glasses when I went to bed.  They were on the pillow.

Thursday, 19 January 2022

The signs of a flare ending: Lupie starts to do normal human things
Ways to tell I'm getting over a flare:

  • I make an appointment for 7pm, and think I might actually be awake for it.
  • I buy groceries, and get the actual things we wanted.
  • I have the energy to save money and buy meat from the wholesale butcher, and fruit and vegetables from the greengrocer, instead of just ordering all my fresh food from the supermarket.
  • I cook meals.
  • I actually have a choice of clean clothes.
  • The house becomes less like a disaster zone between visits from the cleaner.
  • I can actually stay awake for twelve to fourteen hours.
  • I write.
  • I sew.
  • I do all kinds of things I like to do.
  • I stop leaving hair everywhere (when flaring, I shed worse than my pets do.)
  • I see things that need to be done and do them, instead of collapsing in a heap crying.
  • I walk more and use the mobility scooter less.
  • I need less coffee to get through the day.
  • I use fewer pain killers, and don't really notice.
  • More music, less tv.
  • Things just get done. 

The danger of getting over a flare:
  • taking it for granted that I can do things.
  • trying to fit too much in, to do too much.
  • pushing past the limit and causing another flare.
Right now, I'm enjoying that I'm starting to be able to do more, and trying very hard to stop myself from doing anything that will cause me to get too sore/tired and start a fresh flare.

Saturday, 17 December 2021

Lupie's Morning Routine

Wake up.  I'm feeling terrible. What to do now?

Analysis. Why do I feel bad?

  1. My eyes are sore dry, and feel like they've been rubbed down with sandpaper.
  2. My mouth's also dry.
  3. My feet and legs are sore and swollen, and it hurts to stand.
  4. Random joints hurt.
  5. Exhaustion.  I feel like I haven't slept in a month.
  6. Overheated.  
  7. Gut feels uncomfortable.
Plan.  What can I do about each of these things?
  1. Dry eyes: Use my eye gel.
  2. Dry mouth:  Rinse with dry mouth mouthwash.
  3. Feet and legs:  Try the tens machine.  If that fails take a fluid tablet.
  4. Joint pain: Tens machine again, if that fails, anti-inflammatory gel on the problem joints, failing that, pain pill.
  5. Exhaustion: Coffee.  Lots of strong coffee, and my vitamin B12 supplement.
  6. Overheated: Turn on air conditioner, and put hair up in ponytail to get it off the back of my neck.
  7. Gut: Take my fibre supplement.
Action. What I do.
  1. Put in eye gel.
  2. Wash mouth with dry mouth mouthwash.
  3. Have coffee and try to remember what else I planned to do.
  4. Go back to bed for another hour because I feel horrible.

Thursday, 25 August 2022

I'm Adapting
Earlier in the month, I posted about an issue I was having with constant vomiting.  My GP added a number of anti-nausea drugs into my cocktail.

Then I started having abdominal pains, and she added a laxative.  It helped.

So now, I've got lots of drugs to keep everything moving in the right direction.

But I still have an issue with nausea.

Yep,  the medication's helped, but the problem hasn't gone away.

It's like morning sickness (and I am definitely not pregnant.)

With my first child, I lost weight in the first few months of pregnancy because of morning sickness, so when I say it feels like morning sickness, I mean it's pretty awful.

For the first few days of this, I lived on Ensure (it's the only meal replacement I could find that appeared from the ingredients list to be free from lactose and gluten.)

After a while, I added some solid food back, in the middle of the day.  A couple of times I tried eating in the evening as well, but found I was really sick while I was trying to sleep.

Today, I tried eating breakfast for the first time since this all started.  It was a big mistake, and I won't do that again.

What's causing the problem?  I have no idea, and my GP doesn't seem to have any idea, except that I have always had gut problems.  This just seems to be my normal reflux and irritable bowel just asserting themselves quite a bit more than usual.

Right now, I'm just trying to be very kind to my gut, being very careful about lactose and gluten, trying not to eat too much when I eat, and being careful to eat plenty of fibre.

One thing that lupies learn to do very well is to adapt to whatever lupus throws at us.

I'm adapting.

Related post: Keeping the Bucket Close

Saturday, 20 August 2022

Murder, Mayhem and Brain Fog.

I wrote the following speech for Toastmasters. It was so well accepted on the first attempt that people suggested I practice it to enter in the Club Competition.

I think I did a fairly good job of writing it.  My problem is, trying to remember it.  For competition, I'm really going to need to be able to present my speech without notes.

This is my big problem.  No matter how many times I read this, no matter how many times I say it all, I just don't seem to be able to get it to stay inside my brain.   

Brain fog strikes again.

Anyone who has tips on learning a speech despite brain fog, please let me know.

Midsomer Mayhem

Madam/Mr Toastmaster, ladies and gentlemen
"It will always be investigated by a detective named 'Barnaby' "

Murder, blackmail, dark secrets and sinister intents, with a charming backdrop of verdant forests, quality china tea sets and perfect gardens is the basis of English village life.

I know this, because I watch Midsomer Murders.

Using this television program as source material, I can tell you everything anyone could ever want to know about life in quaint English villages with names like Badger’s Drift.

Ah Badger’s Drift.  It sounds like badgers build little rafts to lie on and just drift lazily down the river. Actually, they drift because they’re dead.

But I’m not here to talk about badgers.  I want to talk about the lives of humans in these villages, and to tell you how you could survive visiting one.

In a typical English village, everyone, from the lord of the manor to the pig farmer knows each other. Often they’re related (frequently secretly as the result of illegitimate affairs.) If you live in one of these villages, you will never know if your boyfriend or girlfriend is also your brother or sister. (Or, perhaps, you will know, and simply choose to have an incestuous relationship, but then you will have to kill everyone who finds out about it.)

On visiting, you will find that most villages have no public housing, or if they do, the public housing estate will be adjacent an exclusive private girls’ school, which has a body in the hay shed. It’s one of the ancient traditions of English villages that private schools must have hay sheds complete with bodies.

The most common cause of death in the English village is murder.  In fact, there are at least three murders per week. These will always be investigated by a police officer named Barnaby. This is because the British police force is a dynastic organisation.  When a senior officer retires a relative with the same surname will always be appointed in his place.

People in villages often look familiar.  So for example, you might be certain that the man living in the gypsy caravan in one village looks exactly the same as the lord of the manor in another village. Someone being interviewed by the police this week, might look identical to someone who was murdered in a different village last year.  Let me remind you of my earlier point, that most of these people are related, and many of them do not even know that they are related. You will find strong familial resemblances everywhere.

The most common pastime enjoyed by village residents is killing each other. Other favoured activities include incest, affairs, blackmail, extortion and disputes over land ownership or right-of-access.

There are lots of community activities; fetes and festivals, garden shows, boat races  and community theatre.  All of these are superficially charming, but they exist to provide opportunities to kill someone.

So how can you survive your visit to these picturesque villages?  I would recommend wearing Kevlar at all times. Kevlar will help protect you  from being bullets, knives and arrows.

 It’s also important to never eat or drink anything.  Remember, you will be surrounded by people who are expert at poisoning, whether with wild grown herbs and mushrooms, or common household items.

Never go anywhere alone, or with just one other person, even if that one person is someone you trust.  Any time there aren’t at least three people watching you closely, you are likely to die.  Of course, you could still die in front of any number of witnesses.

Do not go to a community event. I know they sound lovely and potentially fun, but a village never holds any event without someone being killed.  You do not want to be that someone.

Beware of people with hypodermic needles.  Horse tranquillisers are commonly used to subdue people prior to murdering them.

Never say or do anything to offend anyone, or act in a way that might hint that you know their dark secret.  Everyone in the village will have a dark secret and will be willing to kill to keep it secret.

In case all of this fails, take out travel insurance and funeral insurance before you go, and have your name, and your next-of-kin’s contact details tattooed on your body.  (Have the tattoo somewhere central - arms and legs can go astray.)

All in all, English villages like those portrayed in Midsomer Murders have a beautiful environment, a fascinating history and social structure, and an intriguing air of something not-quite-right.

If you go there, and survive, you could have the most exciting time of your life.

Friday, 19 August 2022

Participation Award

Image: flowers.  Text: To all the lovely lupies who coaxed sore, tire,d complaining bodies out  of bed and took part in today; you're awesome!Have you ever heard people complain about little kids getting "participation awards" when they don't win competitions?

They'll say things like: "I never got an award for just turning up."

Well, I never got an award for just turning up either, and I really think some days I deserve one!

I think all lupies have those days, when just getting out of bed is an award-winning performance.

We all have times when if we manage to smile and say, "I'm fine," through all the physical pain we're in, we should get a Logie.

Some days, we deserve Olympic Gold, for walking down our own hallway.

Some days, we should get an ARIA award for opening our mouths and not screaming in pain.

Some days, the artwork involved in make-up to change a rash-covered death-mask into a "normal" face is deserving of an Archibald.

If you coaxed a sore, tired, complaining body out of bed this morning, you deserve an award.

If you took part in today in any way despite pain, fatigue, brain fog, depression and rashes, you should get a round of applause.

If you did something to care for someone else today, despite being barely able to care for yourself, you should be Australian of the Year.

Pat yourself on the back (or get someone else to do it - arthritic shoulders don't like to reach like that.) You deserve all the awards.

Hip! Hip! (The good hip, not the bad one.) Hooray for you!

You are amazing.  Don't ever forget it.

(Note: for overseas readers - a Logie is an acting award, an ARIA award is a music award, and the Archibald is a portrait-painting prize.)

Sunday, 7 August 2022

Lupus Headache

Now that I've stopped throwing up, what comes next?

A lupus headache of course!

Going back to bed now, to let my head explode in peace.

I hope all you lovely lupies out there are feeling better than me today.

Wednesday, 3 August 2022

Keeping the Bucket Close
After a week of vomiting constantly, I am now taking an extra three anti-nausea drugs, and the doctor has said I can drop by up to twice a day for an injection of another anti-nausea drug.

I've spent the past week on lying on the couch, bucket beside me, marathoning Pretty Little Liars.  If you haven't seen it imagine a soap opera with a body count, or a teen slasher film extended into a very long and endlessly complicated television series.

It was mindless stuff, which is usually exactly what I need when I'm too sick to care about anything in real life.

When I started to come out of the worst of this, I took a look online to see if there were any more series after the six I'd seen on Netflix.

That's when I discovered that one of the actors, Ian Harding, (Ezra Fitz the teacher who has an inappropriate relationship with a student through most of high school),  is involved with the Lupus Foundation of America (but not in any inappropriate way).

Apparently his mum's a lupie, too. Hopefully, she didn't throw up the whole time she watched the show.

Lupies: we're everywhere.