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.

Global Warming? No, It's Just My Own Personal Climate Zone

Every now and then a topic comes up on the Sometimes, it is Lupus Facebook Page, that starts a major discussion.

Yesterday, a lovely lupie asked about suffering from being hot and sweating.

Lots of people have answered to say they have the same issue.

No matter what the ambient temperature, they are hot and sweaty.

Some attribute it to lupus, some to prednisone, and some suspect they might be entering menopause.

There were one or two who are like me.

I have my own personal climate zone.  Global warming won't touch me.  (OK, it might cause cyclones, floods, droughts, etc that could all affect me, but the temperature bit won't bother me.) I've got it all wrapped up.

I can be freezing when everyone around me is hot, and I can be hot and sweating when everyone around me is cold.

Now, I often do suffer aches and pains from the cold in winter, and extra fatigue in the heat of summer.  But I also often am just of doing my own thermal thing, with no relationship whatsoever to the ambient temperature.

I can be cold and shivering on a hot day, or hot and sweating on a cold day.  At times, out of curiosity, I've taken my temperature, and found it quite normal, despite me suffering from the opposite extreme of temperature to what everyone else is experiencing.

Is it lupus?

Is it medication?

Is it just my body being slightly ridiculous?

I don't know.  I don't know if anyone else knows.

All I know is if I'm going away for a couple of days, I need to pack clothes for every possible (or even impossible) weather eventuality.

It's Hot

It's hot here in South East Queensland.  The Wet has arrived, so it's hot and humid.

I don't do well in the hot weather. (I don't do well in the cold weather either, but I'll complain about that mid-year.)

I have an air conditioner, but only in the living area of the house, and the really hot days can be more than the air con can cope with.

Heat makes me fatigued.  Lupus fatigue is tired times a thousand. Every part of me feels tired, even breathing is exhausting.

The air conditioning doesn't reach my bedroom, and sometimes the fan just doesn't make enough difference for me to be able to sleep, so I just lie in the heat, getting more and more tired.

I had a brainwave the night before last.  I picked up my pillow and moved to the couch to sleep under the air conditioner.  It was the best night's sleep I'd had all summer.

A good sleep is a great help.  I still feel fatigued, but I feel like I can survive it.

So if you're looking for me, I'm spending the rest of the summer right beside the air conditioner.

Ain't No Cure For The Summertime Blues

Patients For A Moment Blog Carnival this month asks how we patient bloggers are coping with the cold winter.  The person asking is lovely Leslie at Getting Closer to Myself wrote the topic, and she is living in that part of the planet that is reportedly cold at the moment.

As for me, I'm here in Brisbane, about 450km south of the Tropic of Capricorn.  Here, we're in the last month of a long hot summer. I'm having trouble remembering winter. We've had a few record-breaking heatwaves in the past couple of months, and looking at the news, it seems the southern states are all on fire. (There's ten bushfires in Victoria and one in South Australia at the moment. There's been lots more throughout the summer.)

Despite the searing temperatures, this summer has been far less traumatic for me than most.

Normally the summer heat saps my energy and I struggle to even get out of bed. And, to be truthful, that is how I started this summer as well.

This year, however, things changed. This year I said to the world's most awesome landlady, "I think I can afford to get an air conditioner, do you mind if I get one installed in my flat?"

She said she and her husband would get me one.

Summer started miserable, with me seeking shelter in libraries and shopping centers and anywhere else I could avoid the heat. Now, I can stay inside at home through the worst of the day.

Some days have been so bad that the air conditioner has struggled, but most of the time it has made a world of difference. It helped when I learned to turn the air conditioner on before the day got too hot - it's much better at keeping the flat cool than it is at cooling it down after it gets hot. This is my first bearable summer in a very long time.

So despite the horror of summer heat, I'm feeling pretty well, much better than I normally would. That might change when I get my next electricity bill, however. (Next on the agenda: solar power.)


Find how other health bloggers responded to this month's PFAM topic at Getting Closer to Myself.

When the (Energy) Budget's Tight

Weather always affects me.

The hot, humid, weather in Brisbane through the summer storm season saps my energy and leaves me exhausted.

Of course, in winter, the cold makes my joint pain so much worse, that it's not really any better than summer.

So with the heat and the humidity at the moment, I'm doing very little, except watching all the things I need to do build up around me.

After the effort of eating breakfast and taking morning pills, I go back to bed for a nap.  There's another nap on the agenda most afternoons.  That doesn't leave a lot of time for life.

So I set priorities.  My children and granddaughter are my top priority.

Next at the moment, is planning a trip to England next year to see my sister. My children, son-in-law, and granddaughter are all coming with me. To minimise the impact of differences in temperature, we're going in July, travelling from our winter to England's summer.

After that come necessities like feeding myself, the son who still lives with me and the pets. At that same level is making sure I take all my pills.

Then I try to save some energy for my friends.

So if you ever visit my house, and notice the dirty dishes in the sink, the washing that's been on the line for a week and not brought in, and the carpets which are overdue to be cleaned - you know why. Those things just didn't have a high enough priority level to make it into energy budget this week.

Maybe when the next storm breaks, and the weather cools down for an hour or two, one of those "extra" jobs will be done. Maybe.

It's Heating Up

It's late spring, and the summer storm season's already begun.

That means incredibly hot, humid days, with storms in the late afternoon or overnight.

It also means I'm suffering from fatigue reaching the point of exhaustion without doing much at all.

My son's first-ever attempt at hairdressing.

And, on top of that, I'm suffering from rashes from the heat.  Dermatitis on my scalp has come back, after being away for some time.

Today, it reached the point where I couldn't stand it any more.

My son came to the rescue, with the hair clippers.

For his first-ever attempt at hairdressing, I think he's done a good job of clipping my hair.

I've also noticed that, although I don't have a serious butterfly rash, I'm starting to get pink across my cheeks, which is not a good sign.

The worst of the hot weather is yet to come. Summer doesn't actually start until December. So far, this year has been Australia's hottest on record, so I'm not looking forward to the last six weeks of this year, or the start of next year either.

I have a couple of strategies for hot weather. One is to get rid of as much hair as possible and wear light clothing.  My home is quite cool, except for the hottest days, and normally I can keep under fans or an evaporative cooler. (Eventually, I will save up for air conditioning.)  When it does get too hot here, I tend to go to places like shopping centres, or fast food places, where I can find a quiet place to sit with a cool drink and my kindle while the worst of the heat passes. As always, I try to avoid being outside in the sun.

Lupus and Weather

It's winter here in Brisbane.

For me, that will mean increasing joint pain as the weather gets colder.

Lots of people with lupus find the weather affects their health. My fatigue increases in hot weather and pain increases with cold weather.  I also find my headaches are worse when there's storms around.

Other people report increased joint pain when it's raining.

For those of you in Queensland, the state government has a subsidy available for concession card holders who have a medical need for air conditioning.  You can get further information on that subsidy here.

The downside to the subsidy (and the reason I'm not trying to claim it), is that you have to already have air conditioning installed in your home to get it. There's no scheme (at least that I can find) to help you get air conditioning installed if you need it.

Heat and Fatigue

lupus.cheezburger.com

Well I survived the big move yesterday.  By the end of the day, my "good" hip felt almost as bad as my "bad" hip - and I was exhausted.  But I'm glad I was able to do a little to help my daughter and her boyfriend.  (All I did was drive the ute - the hire company wouldn't allow a young driver to do it. The kids and my ex-husband did all the lifting and carrying.) There was a time I would have had no problem with lifting as much as anyone else.

I've also seen (having moved out some furniture that's been here since we moved in) just how dirty the carpet  at my place is. So I think that over the next little while I have a new project. My vacuum cleaner is also a carpet washer - and the carpets are long overdue to be washed.  I'm not going to try to do the whole house at once, but will try to do a little patch once or twice a week until it's done. That really is a big challenge.

Our Queensland heat wave is about to reach its peak tomorrow, so today I'm trying an experiment, one that I know will do terrible things to my electricity bill, but I hope will make life tolerable. I'm leaving my little portable air conditioner on all day, and turning on the evaporative air cooler in the lounge room and leaving it on - shutting whatever doors in the house I can so that I'm trapping that coolish air in as small a space as possible and seeing if I can actually keep the house tolerable for the day. If that fails, I'll turn everything off and retreat to a shopping centre or a City Council Library.

Really, if I can avoid going anywhere today, that would be good, as I'm still recovering from yesterday.

Stay cool, whatever you're doing today.

Stay Cool

The last few days here in Queensland have been hot, and the next few are predicted to be pretty awful as well.

I've been posting information as it comes out from Queensland Health about heat stress and staying cool.

What I've personally been doing to try to avoid the heat is to leave home in the hottest part of the day and go somewhere that is air-conditioned. Generally, I've gone to our local Hungry Jack's. They've got free soft-drink refills, so I buy a diet coke, and read their copy of the Courier Mail, or my Kindle for a couple of hours.

Yesterday afternoon, I went to the movies with a friend to see the new James Bond film.

I'm thinking for a change this coming week, I might visit a couple of the City Council libraries in nearby suburbs.

The big concerns in extremely hot weather for me, and probably for many other lupies, are to stay cool and to stay out of the sun.  Heat makes the fatigue of lupus much worse for me, and sunlight not only causes rashes but also makes me feel incredibly sick.

Beyond that, we have the same issues as everyone else. We need to stay hydrated, wear cool comfortable clothes, and be aware of the symptoms of heat stress.

Oh, and as all the reminders on ABC radio are saying, don't forget your pets.  Make sure they've got plenty of fresh water and somewhere at least shaded to stay.  (Our household has discovered that pet rats love ice cubes and frozen vegetables.)

Today, I'm helping my daughter move house. (No, I'm not doing the lifting - just driving a ute for them, the ute hire company doesn't let young people drive their vehicles.) I'll be making sure I have a ton of sunblock on, and will be staying in the cool as much as possible, and taking a bottle of water with me.

Whatever you're up to today, stay cool.

Message from Queensland Health Regarding Heat Stress Danger

Dr Michael Cleary, Deputy-Director General, Queensland Health talks about heat stress symptoms.

30 November 2022 - Queensland heatwave

Parts of Queensland are currently experiencing very high temperatures so it is important we do everything possible to protect ourselves from heat related illness.

Call 13 HEALTH (13 43 25 84) at any time for practical medical advice & assistance - in an emergency call Triple zero (000)

(Reproduced from Qld Health via YouTube)

Heat Warning

It's the start of what is going to be a long, hot summer.

The weather bureau was talking on the radio this afternoon of temperatures up to 10 degrees higher than normal.

So it seemed like a very good time to share this information from Queensland Health about the health dangers of hot weather, and how to avoid the risks.

http://www.health.qld.gov.au/disaster/documents/stay-healthy-heat.pdf

Prayer Request

As I write this, on a cool  Brisbane Spring morning, with clear blue skies, it's strange to think of a huge hurricane hitting on the other side of the world.

Today, I'm going to use the post to ask you to pray for those in the path of Hurricane Sandy, especially those who are not in great health.

Disasters are a challenge to anyone. The time recovering, often without electricity, water, phones or other basic services can be a major issue. It's worse if you're worrying about whether you're going to run out of medication before things get back to normal, or if you can meet your doctor's appointments, etc

Cold Bones

lupus.cheezburger.com

I know we've had a few cold days here in Brisbane this winter - cold, that is by the objective measure of being the coldest in however many years. But the impact it's had on me this winter is ridiculous.

Usually cold just makes my joints hurt - it's the heat of summer that normally causes me terrible fatigue.

But this winter, I'm feeling the cold in a different way. No matter how many blankets I put on the bed, no matter how many layers I wear, I feel cold on the inside. I feel like the cold is deep down in my bones - and nothing I do at the outside is warming up the inside.

I'm also feeling cold at the extremities - fingers and toes sometimes lose feeling or even change colour.

For those of you who actually live in a cold climate, you would probably think our winters here are very mild.. It's unusual for it to get down to 0 deg C overnight. During the day, we're up to the low 20s, which is not much colder than I set my air conditioner to in summer.

Yet, here I am, wrapped in as many layers as possible, and still feeling that my bones are so cold they're aching. My joints are feeling hurting - not seriously, but every one of them is hurting a little.

Winter

Woof and I are under the furry blanket.
We're staying here until half-past spring.

Winter is starting here in Brisbane.

I don't like the cold weather. Cold weather dries out my skin and hair, and it makes my joint hurt.

Today my dry skin is so bad, I've just knocked off one of the bumpy bits of rash, so my arm's bleeding.

I also find that when my skin's dry I get more redness on my nose and cheeks. Yesterday, my son said to me: "Mum, how did you get sunburnt when we've been inside all day?"  I'm fortunate, I don't get a pronounced "butterfly rash". I just get a bit of pink or red that comes and goes. It does look like sunburn. (And I really never get sunburn because I just don't go out in the sun.)

So at the moment, my best friends are my hot water bottle (which moves from one joint to another), and the sorbolene moisturiser I keep slapping all over my skin.

Keeping Cool

It's summer here in Australia.  And in South East Queensland, it's been hotter than usual. We've had two really hot days - and temperature is expected to come up to 33 degrees C again tomorrow. (Actually, I've lived in hotter places, but with air conditioning and not with this amount of humidity.)

On the plus side my portable air conditioner is working - not especially effectively simply because it's only a little air conditioner and the hot humid air is just too much for it.

So, how to deal with the heat?

One tip I got from an article about helping pets survive the heat: wrap an ice brick from the freezer in a towel and put it inside your pillow slip of a night time. It really does make a difference. A flexible ice pack is better if you have one.

Another is to keep a spray bottle of water in the fridge - just have a squirt from time to time to cool down.

Find a reason to go to an air conditioned shopping centre in the hottest part of the day. I'm meeting a friend for coffee tomorrow, then going for a walk in the shopping centre. Another good option (better actually, because it's free) is to go to the library and read some books or magazines for a few hours.

Eat cold. Eat salads and cold meat or canned legumes, etc. Eat fresh summer fruit straight from the fridge. Turning the oven on makes the whole kitchen hot, and the rest of the house hot as well. Even if you love baking, as I do, a very hot day just isn't the time.

Drink cold - iced water, iced tea, iced coffee.

Cool showers and baths can help.

Despite my need for exercise - I'm not working out until the temperature gets back below 30 deg C. I'm well at the moment, but want to stay that way, which means I'm not going to push myself too much at this stage. Working out when it's really hot just doesn't work for me.

I'm doing things in the early morning and late afternoon and evening. During the heat of the day, I lie on the lounge, in front of the DVD player, with an ice brick in my pillow case and a fan aimed at me. I could push myself to do housework or other things through the heat of the day, but I know from experience that I would pay for it later. So I'm saving energy through the hottest part of the day, because I don't want the horrible fatigue I know I would have if I tried to do too much when it's hot.

The weather's set to cool down a bit by the day after tomorrow. So I'm most of the way through the really rough patch. But in the meantime, my biggest challenge is to keep cool.

The weather's one of the things that affects lupus, and that we can't control. The best any of us can do is to find ways to minimise the consequences of extremes of temperature.

What's next?

It's December.

I survived both health blogging month and NaNoWriMo simultaneously. Will I do both again? Give me a year to recover and I'll think about it.

I'm already into Advent services and gearing up for Christmas - so as far as my church work goes, it gets busy from here. Part way through January I'm going to take holidays - not to go anywhere or do anything , but just to stop. Here in Australia, January is the middle of summer. There are two times of year I just don't function: when it's hot and when it's cold.  When it's hot, I'm tired and when it's cold my joints ache.

I've also got way behind around the house while I've been immersed in my frenzy of writing to deadlines. I have a house inspection mid-December, so that kind of needs to be caught up. (And I have to somehow motivate my kids to do their share - not an easy task.)

I'm already thinking of "what's next"? What insane challenge can I give myself so I  feel like I'm achieving something? After I recover, that is, from all that I did in November.

A Reminder of Storm Seasons Past

16 November 2008, when the palm tree fell across the
driveway, and our street turned into a waterway.

This morning, I woke up to severe storm warnings repeatedly on the radio, and text and email alerts from the Brisbane City Council's Early Warning Centre.

While I rushed to make sure the car was locked in the garage, and told the kids to bring in any loose stuff from outside, I remembered another severe storm, not all that long ago.

It was 2008's storm season, and I was still working at the hospital. In what became known variously as "Supercell Sunday" and "The Gapocalypse", the suburbs of The Gap, and Keperra, and others surrounding us were hit by a series of intense storms, referred to on the day as "mini-cyclones."

The storm had begun as I was driving home. Rain was making visibility minimal, and there was water over the road.  I know that there is a good reason the police warn people against driving on flooded roads - but I knew my son was home alone. He didn't cope with storms at all well then, mostly because the dog went berserk and he couldn't cope with the dog.

So, I drove on, past other cars parked at the side of the road.

I came to the end of our street and turned in - to find it was blocked by fallen trees. I went round the long way to the other end of the street, and trees fell down behind me as I drove in.  I got home, and moved the bird cage from the patio into the garage, and put the car away, just as the worst of the hail, wind and lightening began.

Our power went out. Phone lines went down. For about 24 hours we were without normal lines of communication.  In the brief times the mobile phones would get a signal, I was able to contact my daughter and tell her to stay at the friend's house she was visiting until further notice.

Only a couple of weeks before the storm, I had attended a disaster management seminar. It was quite amazing to see everything I had learned about in theory roll out in practice around me. Emergency centres were set up, information came out on the radio. (I'd had to go and buy a battery-operated radio - even having been to the seminar, I wasn't ready.) A warning came out fairly quickly that our water supply could be contaminated, so we had to get bottled water.

Almost as soon as the storm was over, neighbours started helping each other out. Someone in our street had a chainsaw, and started cutting up the trees that had fallen on the road and across our driveways.

What amazed me when time came to clean up our yard, was my son. At age 14, he understood my limitations.  He saw me attempting to cut back broken branches, and announced, "Mum, you can't do that." He did it. He cut broken branches, he dragged corrugated iron (which had been a carport from across the road) to the rubbish pick up point on the footpath. He worked harder in those few days when we had no power than I had ever seen either of my kids work on anything.

I did still do more than I should have. There was no way out of it, there was just too much to do, and many of the jobs in the clean-up my son didn't know how to do alone. I did enough to show him how.

I needed a lot of sleep time to catch up, but I made it through without my lupus becoming worse, mostly thanks to my amazing son who on that day showed me he was not a child any more, but a responsible young man.

Prednisolone!

I'm starting to feel tired - but still hyped up with the prednisolone I'm taking. It's a strange feeling, knowing I need a rest, but not being able to settle.

I'm getting things done! It's easy to be efficient when you can't stay still - but I also very much need a very long nap! I'm also starting to get nauseous. That just goes with the drugs, too. (Maybe if I feel really sick, that will help me eat less and stick to my diet.)

On the plus side, the pain is still under control - after a few weeks of having my shoulder in unbearable pain, and not able to do anything with it, that's a great blessing. In fact, that feels like a miracle. It's something really to celebrate.

My psychologist told me to get back to my arts and crafts, draw, paint, embroider, anything that requires me to focus on just that so I can slow my mind down from constantly trying to do a million things at once.  That may work - and I'm actually enjoying carrying my sketch book and pencils most places I go. But now, I don't know how to slow my body down. My knees are bouncing around under the desk as I write.

Spring is has begun - and the aches and pains from winter should start to go away anyway, so maybe the extra prednisolone won't be for long.  With spring comes the warmer weather, which makes me tired - so it's time on the patio in the cool of the morning - and then trying to stay in airconditioning for the rest of the day from now on until late autumn.

My son's on school holidays, and we have a school holiday tradition of going to a shopping centre or fast food place to sit in their airconditioning for the hottest part of the day. Otherwise, I have a little portable airconditioner I keep in my bedroom/office here at home, so I will practically live in this one room now.

But it's supposed to be Spring!

Well Spring has sprung - the weather had begun to warm up. I'd even started to turn my air conditioner on to cool the room down so I could sleep better at night.

Then, out of nowhere, the late winter westerly winds reappeared. And they brought cold. Lots of cold.

All of the joints in my left side, especially my shoulder, but even tiny the tiny joints in the fingers of my left hand and toes of my left foot, are telling me it suddenly got cold. They're yelling it more than telling me.

This is incredibly unfair!

There's not a lot I can do about it, except have warm baths, and apply lots of anti-inflammatory gel, and take all my pills. Apart from that, I just go on with business as usual.

I'm the only human at home, so I'm thinking it's a good time for a long nap before everyone else reappears from wherever they've gone.

Have a great week everyone, and stay warm.

Parking spaces

I'm not excited by trips to large shopping centres at the best of times. There's too much background noise, and I can't clearly hear what people are saying to me.

The absolute worst time of year to go to a major shopping centre is December and January.  To start with, this is the worst of summer here in sunny Queensland - summer heat means I get tired far more than usual Then the December pre-Christmas sales, then the Boxing Day sales, then there's the January sales which just run on from Boxing Day, along with the school holiday crowds, means the carparks are always full.

I have been tired and sore from the heat, just about too exhausted to even think about what I've faced the trauma of a shopping centre to buy anyway, and had to drive around the carpark for 30 minutes, looking for somewhere to park

At these times, I've looked at the empty "disabled" parking spots with a kind of avarice I think I rarely have over anything.

I, along with many other people who have chronic illnesses that involve severe pain and fatigue, do not qualify for "disabled" parking.

I checked the Queensland Transport website. To get the magic tag that makes those spots legally accessible, one must need assistance with mobility. So, people with wheelchairs, walking sticks, and walking frames get the spots. And I don't begrudge them those, they need it.

But people with Lupus, people with MS that hasn't progressed to the point of needing a wheelchair yet, people with some cancers, etc, who suffer from fatigue and pain, but aren't attached to any hardware, don't get the permit.

Most of the time it doesn't worry me. Most of the time, I wouldn't use the permit if I had it. But sometimes, on those incredibly hot days, when I can't walk five metres without falling into exhaustion, when I need to buy something so desperately that I absolutely must go to a shopping centre - God help me, I covet a disabled parking permit!