Tuesday, 31 March 2015

Fog Fatigue Movie Review

Movie Title: I forget.

Synopsis: Two brothers, the pregnant wife of one brother, and the other brother's dog go hunting, declaring alcohol and firearms a family tradition. (You know at this point these people are going to die.)

The forest is closed, but being very naughty people (who are probably going to die), they go in anyway. The camera pauses ominously at a pile of shoes in the slide as they go through a disused playground.


The dog is dead (I said someone is going to die). Someone in a weird mask is shooting at the man who owned it. (He's probably going to die too.)


The woman is telling her husband she's pregnant. They both have Xs on their foreheads, and the husband seems to be in his underwear. They're walking through the forest. (They're probably going to die as well.)


"Here are your pills, you really need to go to bed." Oh, that's not the movie, that's my son. Looks like the movie's over already.

Characters: There were some. The dog was a very convincing dog, disappointing to see it killed off so early, if it was early. The humans, I could take or leave.  Actually, leave, they didn't seem very bright.  They missed all the cues at the beginning that said they were going to die.

Camerawork: That significant pause on the shoes was really good, if it meant anything at all, which it might or might not have.  It probably meant they were going to die.

Dialogue: Pretty dumb, and not much of it. I couldn't have heard much more than ten minutes of dialogue in the whole film.

Direction: I guess there was some direction happening.  A bit hard to tell from what I saw.

Sleepability: Ten stars.

My Overall Impression: Watching a movie with lupus brain fog and fatigue means never having to know how it ended.

Wednesday, 18 March 2015

Ssssshhhhhhh. It's An Embarrassing Secret

Image: Shower. Text: You think you've defeated me, but I'll be back. Evenutally.I have an embarrassing confession to make.

I know I'm not alone in this, because other lupies have told me they do the same.

Please don't think badly of me because of this but... (whisper)  I no longer shower every day.

You see, lots of everyday things leave me utterly exhausted.

One of those things is having a shower.  I can do it, but I have to just rest for half an hour, sometimes longer, afterwards.

All in all, a five minute shower takes a big chunk out of the energy I have available to survive the day.

So, I'm afraid, I only shower every second day.

But at least I'm not the only one with this terrible secret.

When I talk on social media about everyday things that leave me exhausted, one of the things that lots and lots of lupies will respond is that showering leaves them utterly exhausted and they have to rest.  As it turns out, my embarrassing secret, isn't just mine.  It's "normal" life for lots of lupies.

So if you're one of those people who enjoy a relaxing shower after a long, hard, day, make the most of it.  For some of us, having a shower is a long, hard, day.

Related Post: The Energy Budget

Thursday, 12 March 2015

It's All In My Head

If you've been following this blog for a while, you know that one of my biggest frustrations is that my
Image - my brain SPECT scan
Pretty colours - not-so-pretty results.
brain just isn't functioning the way it used to do.

It's not just that I'm getting older.  I haven't just been forgetting the odd thing here and there.  I've been completely confused at times, and I've had the odd hallucination.  (Actually, all hallucinations are probably odd.)

The latest person to look at my mental failings is a gerontologist (a specialist who looks after old people).  She sent me for an MRI and a SPECT scan of my brain.

For those who haven't experienced either of these tests, I should explain what it's like.

For the MRI, the specialist double-checked when referring me that I wasn't too fat to fit in the machine (well, that really made me feel good about myself), and asked if I was claustrophobic.  Again, at the radiology place, I was asked several times if I was claustrophobic.

When I was finally in the machine, and wondering if I might end up tightly wedged in there and not be able to get out, I realised that it was entirely possible to become claustrophobic left in this tiny space.

I was lying on a very narrow gurney, which automatically drove itself into a tiny slot (like the eye of a needle) in a large white machine.  It made lots of thumps and grinding noises.  Imagine someone very enthusiastic but not very musical, practicing percussion for a heavy metal band. The challenge is to lie as still as possible, not freak out about whether or not it is possible to actually get out of the machine, hope there's still someone out there operating it, and survive the worst percussion performance in history.

The end result? My MRI was perfect.  No sign of anything whatsoever wrong. All good, except there were still no answers there.

Now for the SPECT scan.

This starts with a "resting" brain.  That means lying in a quiet dark room, but not being allowed to go to sleep.  Half-way through my time of darkness and silence, the nurse entered the room and injected a radioactive material into my arm.  (No, I didn't glow in the dark, or gain super powers.  Pretty disappointing, really.)

Then I had to lie down on a gurney, which threaded me head-first into another piece of techonology, which wasn't quite as loud as the MRI, but which, like the MRI seemed to take forever.  Actually, if you've ever had a regular CT scan, it's pretty much the same thing.  (I actually had a regular CT not all that long ago, but it didn't give any useful information, either.)

It was the SPECT scan that confirmed that actually, my symptoms have a cause.  I have restricted blood flow in my left temporal lobe. There really is something going on in my head, and it can actually be seen in a picture (for people who understand those kind of pictures.)

What does this mean for me? For my treatment from here?

I have no idea yet.  My GP called me in and gave me the test results.  I have to wait another two weeks to see the gerontologist to see what happens next.

Is this caused by my lupus? The GP thinks probably so, after all lupus can cause vascular problems (vasculitis) and lots of parts of the body.

What happens from here, I don't know.  After I've seen the specialist, I'll tell you what comes next.

How do I feel about it?

I'm ambivalent, really.  I'm glad to actually have a concrete explanation for my cognitive problems.  It's a relief to know there's something physically in my head - because there were times I wondered if maybe it was "all in my head" in another way. (Lupus is quite bad enough, I don't want any serious psychiatric problems as well.)  On the other hand, I'm also  bit anxious, because I don't yet know what this means.

Further reading:
CT Scan (Wikipaedia explanation) http://en.wikipedia.org/wiki/X-ray_computed_tomography
Lupus Vasculitis (Lupus Foundation of America http://www.lupus.org/answers/entry/what-do-i-need-to-know-about-vasculitis-and-lupus
MRI (Wikipaedia explanation) http://en.wikipedia.org/wiki/Magnetic_resonance_imaging
SPECT Scan (Wikipaedia explanation) http://en.wikipedia.org/wiki/Single-photon_emission_computed_tomography

Monday, 9 March 2015

I Walked Around the Shopping Centre

Image: Balloons. Text: I can do most of what other people can do. (Just not for long,and I need a long rest to recover.)I walked around the shopping centre today.

I hadn't planned to do that, but the battery of my mobility scooter hadn't been charged and it failed fairly soon after I started my day out.

It was OK, I told my family.  We'd just go slowly and still get everything done.  I had my walking stick, and we weren't there to do much, anyway.

We really did go slowly.  As the morning went on the pain in my right hip and left knee got worse and worse. Somehow, the local shopping centre was much larger than it usually is.   I'm sure it was several kilometres between shops.

Eventually, we'd done everything we had to, and were heading back to the car.  That was the opposite end of the shopping centre.

I found I was getting slower and slower as I walked. The carpark was moving further and further away.  Each step, I wondered if I could make the next one.

Eventually, I had to call out that we needed to stop.  Sitting in a coffee shop allowed me the chance to recover enough to get to the car.

Although we had spent about 15 minutes in each of four shops, the morning's outing had taken us three hours.  That means my walking time, and all my rest stops, took up about two hours. (No wonder my poor little grand-daughter was starting to get a little irritable by the end of it.)

Checking the pedometer on my watch, I expected I had walked about a hundred thousand steps. Sadly, no.  I've only done about 4500 steps today.

When I got home, I collapsed on the couch, turned on the television and passed out. My son woke me up when he cooked dinner. Now, I'm just about ready to go back to sleep.

But, hey, I walked around the shopping centre today.  I'm just like everyone else.

Sunday, 8 March 2015

Black and Blue (I'm Not Talking About A Dress)

Image: arm with two bruises. Text: bruise from needle, bruise from dressing.
I bruise ridiculously easily.

I had a needle for a test the other day. (I was injected with radioactive stuff so a CT scan could see the blood vessels in my brain - we'll talk about it in another post.)

Ordinarily, if I have a needle, and a dressing is put over it, I pull the dressing off almost straight away. This time, I couldn't get to it for a couple of hours (having to lie still with my head in a CT machine, and things like that happening.)

When I took the dressing off, it left a bruise.  days later, the bruise from the actual needle is gone, but the bruise from the dressing is nasty and purple.

I usually have "mystery bruises". They definitely are bruises, that's not the mystery. I just have no idea how I got them.  It takes so little to make me bruise that things I don't even notice at the time can come up as a huge purple bruise a day or so later.

I don't know if it's an effect of lupus, or if it's just me.

I do know it's not from my medications (or not just from my medications) because I was like this long before I was diagnosed.

So, if you ever meet me, and see that I'm covered in bruises, I haven't just been beaten up. At least, I'm not likely to have been.

Thursday, 5 March 2015

Brain Fog Day Reminders

  • Take the clean dishes out of the dishwasher before trying to put the dirty dishes in it.
  • The budgies like lettuce for a treat. The dog does not.
  • Smiling and nodding will only get you so far. Sometime you do have to admit that you've completely lost the thread of conversation, and ask for a catch-up.
  • Medication is important. Does anyone remember what I've taken?
  • Red means stop. Green means go. (If you don't have the option to stay at home.)
  • That drip - drip - drip noise means finish turning off the tap.  The rushing river noise means it wasn't turned off at all.
  • Stoves are best turned off when not in use.
  • Cats like to be fed. 
  • If your new glasses have slipped through a wormhole into another dimension, your old glasses will do for a while.
  • Keep all objects which are likely to slip through dimensional wormholes (pens, phones, keys, glasses, etc) within sight at all times.
  • Food scraps go in the worm farm, cans and bottles go in the recycling bin.
  • Find out if you've eaten anything today. Food can be good.
  • If you've read the same page 15 times, that just means you get to enjoy the book for longer.
  • A constant electronic beeping is highly likely to mean something, the right response is to look for the thing that's beeping.
  • No matter how important the thing you forgot to do was, getting upset won't let you go back in time and fix the problem. Just accept it and move on.

Monday, 2 March 2015

Got the Time?

I love gadgets.

I have gadgets to help me open jars, gadgets to help me move around, gadgets to help me organise everything.
My new Pebble watch.

So, would it be any surprise to know I have a new gadget? This was a gift from my son.  Yes, it's a watch.  I've had watches most of my life (usually I go for pretty little gold ones, not big bulky plastic ones.)

What's so special about this?

Well, it's a smart watch, and it's customisable.

Mine now monitors and tracks my activity and sleep.  It's got a weight tracker, and if I have any kind of emergency, I can shake it, and it will automatically send emails to selected family members to say I need help.

Sleep tracker

I have an app which will help me find my mobile phone. That's very useful when my memory problems cause me to constantly forget where I've left my phone.

I've never dared take a watch in water, but this one is advertised as being OK to take in the pool, so I can use it to track my activity during hydrotherapy, as well as walks and just everyday life.

Activity tracker.

If I hadn't already had the pharmacist put all my pills into prepacks, I could have a reminder on my watch telling me which drugs to take when.  (I may still set reminders for the things that don't go in the prepack.)

If I had other kinds of health problems, I might use some of the other apps available, such as the seizure detector, or the diabetes app, or pulse check.

I only received this yesterday, so it will take a while to see if this really makes a difference to managing my health, but it looks promising.

Oh, and did I mention, it also tells the time?

Saturday, 28 February 2015

Finding Support

When I was first diagnosed with lupus, I didn't know where to turn for support.
Our get-together today.

That's not unusual.  In some places there are great, well-established support groups, in other places, there isn't.  Support groups have to be started by someone.

I eventually found the Lupus Association of Queensland, not because there was some big, organised entity with that name.  No. It exists because a lovely lupie named Gail couldn't find any support when she was diagnosed, and took the initiative to find some other people in the same situation.  She found Annie, and between them, they have organised informal get-togethers on a fairly regular basis for quite a long time now.

There are a lot of lupies who owe a great debt of gratitude to these two ladies who, despite their own health problems, went out of their way to create a community. Although ALQ has a name that sounds like some big official organisation, it really is a community, a network of lupies who are there for each other on-line, with an occasional get-together.  

As people living further away from Brisbane have joined the group online, it's been spreading.  There have been get-togethers over a bigger area, as other lupies have realised we can continue what Gail and Annie have started. 

I had hoped to be able to keep going to Brisbane for get-togethers after I moved, but have found that the drive is getting far too much for me.  So I offered to organise a get-together locally.  It was a great success, with about eight people there today.  

Now I have to say I have great support from family and friends, but there is something special about being able to spend time with other people who are going through the same things.  It makes a difference to be able to feel like a "normal" member of the group (even if this group's "normal" is a little different to everyone else's.)

We had a great morning, and before we left, we booked the cafe again for six weeks' time. (We weren't going to risk that I would forget to do it.) 

A special thank-you to Wray Organic Cafe and Market in Ipswich, for wonderful food, and great service, and for little extra touches (like putting apples for us in each of the place settings) that made us feel very welcome.

Thank you to Ipswich Mayor Paul Pisasale, who shared the event on his Facebook page, to help us connect with other lupies in the are who might not have already found us online. 

Friday, 13 February 2015

How to Show a Lupie Some Love

Image: vase of roses on black background. White text; "This Valentine's Day, show a lupie some love."Tomorrow is Valentine's Day.

I don't have a romantic relationship at the moment, although I did buy a present for a "special someone". (I bought cute shoes for my grand-daughter.) I do have people in my life who I love very much, and I don't think love really needs to be limited to romantic relationships.

Saint Valentine's message was about God's love, rather than romantic love. It's bigger than just one other person.

So, if you have a lupie in your life, and you want to show them a little extra love for Valentine's Day (or any other day, for that matter), what can you do?

I asked lupies on social media.

Believe it or not, we don't all want flowers and chocolate (although, I'm sure those would be nice, too.)

There were two main themes for answers.

The first was: help with the everyday work. Lovely lupie Twyla pretty much summed this up: Some help cleaning my house would be an amazing gift, it's causing me so much anxiety. I've always had a tidy house even battling lupus for 24yrs. But the last couple of months I have no strength or energy. 

Along similar lines, lupies said they'd love premade meals, the washing caught up, and pretty much anything else that would ease the burden of the necessary activities of daily life. Lovely lupie Sarah specified wash, dry AND put away 55 loads of washing.

Cooking a nice meal at home (without the crowds of a restaurant) also got the thumbs up.

The other big theme was a spa day, or similar.  Some suggested massage, one lovely lupie would love a heating pad. There were lupies in favour of manicures and pedicures. (Pedicures are especially valued by those of us who can't reach our own feet anymore.) This doesn't have to be expensive: as lovely lupie Megan said she just wanted chocolate and a hot bubble bath.

There are some lupies who would be grateful just for your time, just to have you turn up and watch a movie or whatever.  There's some who would just love a nice card, and to know you thought of them.

Of course, there's always someone who has different plans. Lovely lupie Pamela's story was unique: I have lupus and heart failure, caused by the lupus, but my husband, in 2007, had a rare tumour in his neck removed. He was the seventh person ever in the world to have had this thing, and was only 36 at the time. He almost died. Luckily he recovered. He was in and out of the hospital the whole year of 2007, and the strain that caused me was unbelievable, especially with a six year old son at home and dealing with my own health issues. His carotid artery burst 10 days post op and we thought we had lost him. But he and I rallied through it and thankfully he's OK now.  His first surgery was on Valentine's Day. So since that day we instead celebrate Happy Tumour Removal Day on February 14th and I make some tumour themed dessert that we then hack into with fiendish delight.  We've had tumour chocolate candies, a tumour cake (with red oozing pudding in the middle), and my favourite... catastrophic haemorrhage over ice cream (with fake, tasty blood  - corn syrup, red dye, and chocolate sauce.) I haven't decided which tumour delight to make this year. 

Of course, what we all most want is a cure.  You can't buy that.  But there are lots of institutions working on it, who would be happy for you to donate to them.  And we'd all feel loved, if we had a cure.

Wednesday, 11 February 2015

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

Image: Yellow water lily on black background. White text: "I have 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.