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Category Archives: health

A plea to game companies, designers, and gamers in general.

One of the highlights of our gaming year is BorderCon in Albury. It’s a small and intimate con, with around 100-120 people, that runs over the Queen’s Birthday Weekend in June in what must be one of the COLDEST lowland areas of the country, right in the depths of Winter. Seriously, it’s bitterly cold – which makes it the perfect time to play games.

I haven’t written much about this lately, mostly because there isn’t much to say about it except weep weep it’s awful, but our 14 year old Bigster is still extremely unwell with Chronic Fatigue Syndrome. At the end of Term 1, she dropped all but her five core subjects (her peers are taking nine subjects) of English, Maths, Science, Latin and German. Her Latin teacher isn’t sure that she can pass with her current attendance – even with the timetable affordances, she is still only getting to about 30% of her classes – so it’s on the critical list at the moment. She even dropped the history of warfare subject that she has been looking forward to since before she started high school. She’s dropped out of Saturday German as well, because she just can’t get there. The German name for this condition is Chronisches Erschöpfungssyndrom which translates literally as “chronic exhaustion syndrome” which seems a much better name to me – when you can’t get out of bed AT ALL some days, when you are a bookworm who is too exhausted to read, when you can’t wash your hair because you can’t actually stand up for the time it would take – that’s more than just fatigue.

The specialist tells us that she still has hope that Biggie may start to recover towards the end of the year. This is critical for us and we cling to that hope. Sadly, she’s not gaming much – the days when she played all (then) 12 Power Grid maps over one epic BorderCon weekend are behind us, at least for now.

The ME/CFS society of Australia offers support for people with this severely life-limiting condition (the 80% recovery rate for young people is much higher than that for adults) and funds research into it. There is no cure and no known cause.

Every year, BorderCon runs a raffle to aid a charity group, often raising over $1000. Donations are received from game companies within Australia as well as from attendees. This year, Neil has kindly agreed that the profits from the raffle will be donated to the ME/CFS Society of Australia.

I have a personal interest in making this the Biggest BorderCon Raffle Yet. So I am going out to game companies and to game designers to ask for your support. Can you donate a game? Can you donate a signed sticker that someone could paste inside their game box (or just put in there if they are a bit fussy about their boxes)? Maybe you have a piece of game artwork that could be included in the raffle? BorderCon is a small con with a big heart and any donation is always appreciated, even more so this year.

 
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Posted by on May 2, 2013 in children, games, health

 

Sniff sniff

I went to the pharmacy today. The conversation went something like this.

Me: I need hay fever pills.

Pharmacy sales person: Ok. Well, we have …

Me: I need TWO DIFFERENT TYPES. That I can take at the same time. Please.

Pharmacy sales person: Oh, Well …

Me: And that prescription nasal spray? Get me some of that too.

Pharmacy sales person: *fetches hand cart*

Me: Oh and my kid needs some prescriptions filled. And please give me some butter menthol cough lollies too. And one of those creepy nasal irrigatiom things.

Because while I may be suffering, at least my credit card is suffering more.

 
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Posted by on September 20, 2012 in health

 

Worserer & betterer

New resolution: never blog about my crappy life. Because while it leads to some amazing messages and offers of help from my wonderful friends (that’s YOU), it also means that things get worse.

Since I blogged, my mum developed pneumonia and was admitted to hospital. Expected total stay 3 weeks. Which would be ok, given that she’s recovering, except that my dad needs help with dressing.

Also, my dishwasher and toilet both stopped working. But they are more easily fixed.

Anyway, with mum sick, I made some phone calls and discovered the absolutely amazing Commonwealth Carer Respite Service, which provides FULLY FUNDED OMG assistance & care. So dad has the low-level care he needs and if necessary we can move to a higher care model. Fabulous!

Which got me thinking about dealing with the Bigster’s Mystery Illness. One of the advantages of having last week off (other than that I was there to deal with mum) was the thinking time it gave me. I had got so caught up in coping that I’d forgotten to step back and ponder. So now we have afternoon arrangements that mean I don’t have to collect her every single day, which means I can increase my hours as work again, and I have some before-school for Otto (ditto) and I’m not working nights.

Note to self: schedule time for pondering.

Well. When I say not working nights. Last night, I learned to use some new software, baked muffins from scratch, did a load of laundry, folded mum’s laundry & took it to her, visited for a while, did some more of her laundry, switched all my work stuff to a new bag, sorted and folded, combed and braided Otto’s hair, packed away baking things, made some plans with the Bigster, talked to Fraser, convinced myself not to buy a camcorder and watched Once Upon a Time (omg how good is that show?!).

Oh, and the toilet seems to have Mysteriously Fixed Itself (yay).

Now if only I could find a time to be home for the Dishwasher Guy.

 
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Posted by on July 18, 2012 in children, health, parents

 

Moving towards chronic: is this our new normal?

Bigster had blood tests done today. We went to the children’s hospital and we parked one level down from where we usually park, and we went and we had this crazy long wait … and I realised that this has become routine for us. She and I are spending so much time at the hospital these days, it’s become a new kind of normal.

And I hate it.

May 4th, so my calendar tells me, was the day we took Bigster to the doctor. She’d been sick for a week with a mysterious run of the mill virus.

And then the doctor said she thought it was glandular fever, and sent the Bigster for blood tests … and then we saw another doctor who noticed that she had lost over 15% of her body weight in 10 months or so … and then the rollercoaster began.

And since then we have worried about (and eliminated) various conditions, mostly things we had not considered until the doctor tested for them, including but not limited to

  • glandular fever
  • leukaemia
  • diabetes
  • brain tumor
  • crohn’s disease
  • coeliac disease
  • some sort of nasty facial tumor thingy.

And she has had tests including

  • at least three rounds of blood tests
  • x-rays
  • a CAT scan
  • a gum biopsy
  • weird facial photography.

And I know that it is a REALLY GOOD THING that she doesn’t have any of those horrible and terrifying diseases.

But also, I wait. Because we have to wait for the doctor to come up with new things to test for, because there is definitely something very wrong with my beautiful girl, and I am so so afraid of what that might mean.

The latest theory is that it might be some form of narcolepsy. Because apparently she doesn’t fit the profile for chronic fatigue, even though she is tired and lethargic all the time. So we had a genetic test done today to check for that. And meanwhile we are meant to be restricting bedrest – so by 7pm she is completely beyond anything approaching manners, and begging to be allowed to go to sleep.

She’s not done a full day of school since the start of May. Even with her shortened days (she comes home at lunch time), she’s not done a full WEEK of school either. We pick her up between 12:30 and 1:30 – and then I try to spend some time with her, see how she’s feeling, and then I collect Otto from school, and then I collapse and sleep for a couple of hours because I was up till 2 or 3 trying to finish the previous day’s work –  and then I start working again at 8:30ish once Otto is in bed, and I work till 2 or 3 again.

I took this week off work, hoping to go away and at least to spend some time with the girls. But it turned out that we couldn’t go away because even 2 hours sitting around at the hospital had her exhausted and cranky. These holidays were meant to improve her health somehow, but they’ve made no difference at all. I need to clean the house, because that doesn’t happen when things get on top of me, but that’s just one more thing to add to the long list of things that won’t get done. And I need to clean her room because Fraser thinks that she has an old lunchbox hidden somewhere in there that might be a biohazard – and I catch myself wondering whether OMG THAT OLD LUNCHBOX is the reason why she’s sick – and what impact the meter changeover might have had (the smart meter is on the outside of the house near her pillow) and other crazy nutter-like stuff. And seriously, I would feed her tofu and quinoa and those other “superfoods” except that there is no way she would eat that stuff.

And while on that – we have good medical advice which I am happy with confident in.. I am venting, not looking for suggestions or for scary stories, because I am quite good enough at making them up myself thank you.

And Fraser will tell me that it’s because it’s 2am that I am fretting like this, and there is a certain truth to that, but when I go to bed at 10 or 11 I just lie there and worry and can’t sleep and pretty soon I’m back down the corridor, sobbing on the sofa with only the cats to keep me company.

Because “chronic illness” is 3 months or more, so we’re just round the corner. And what comes after that? What’s the next trigger point? And how much school – and how much social life – will she have missed by then? She’ll be 14 in a little under a month, and right now she can’t think of anything she wants to do for her birthday, because she doesn’t think she’ll have the energy to do it.

And I try to be upbeat, because honestly, I just CAN’T believe that it is something so serious that it will affect her forever. But then I look at the trouble she has staying awake for even nine or ten hours, and I just wish I could do something to fix it.

And that is why I haven’t been blogging much. It’s hard to be upbeat and chatty right now.

 
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Posted by on July 12, 2012 in children, health, parenting

 

When I rule the world: Medical tests.

1. When tests are done, the person tested will be given an accurate estimate of what day the results will be available.

2. When results are ready, the medical institution providing said results will call the preferred contact number to pass them on.

3. If that doesn’t work, it would be nice if they called the other contact number too.

4. If it is a Friday and they are going to be closed for the weekend, it would not be inappropriate to consider trying again later. Especially when they have failed at point 2.

5. When a patient then calls on Monday morning at 8:40, they will not have to call back at 10:20 and have a hissy fit before getting results.

In other news, my hissy fit has paid off. I had a phone call less than 15 minutes later. And the results are CLEAR (although still indeterminate).

Which is still beyond awesome.

 
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Posted by on June 25, 2012 in health, parenting, rant

 

This week in my life

There was a trip to the dentist. Resulting in a bruised jaw and droopy anaesthetised eyelid. Very attractive, me.

Also two trips to the Children’s Hospital, involving four vials of blood and a chest x-ray.

There was a trip to my accountant to do OMGTAX. And, if I manage to squeeze it in, a trip to the local council offices to view and photocopy the plans for our house.

There were traffic lights on Facebook that made it into my blog. And a bad friend who quoted the Traffic Light song and now I have an earworm.

There was a Diagram of Cheese, which did not. Until now. I don’t think it’s very complete.

There was an ill-advised Trip to IKEA (if I count last Sunday as part of this week).

Two gifts were bought for Fraser. He does not know what they are so I cannot tell you, Dear Reader. But they are awesome. And one might be for Sharing. Tragically, though, neither of them is Spy Cufflinks.

There was lots of work, jammed in between driving the Bigster around and hangin’ at the hospital.

And Nigerian Spam, addressed to Dearest One. Which made me feel happy even though it was from the Bad People.

There were no games at all, and only one very mediocre book. (See my slightly ranty review of the latest Pern novel, Todd & Anne McCaffrey’s Dragon’s Time at Goodreads – warning, SPOILERS sweetie!)

But there were TWO purple vegetables. Neither of which is usually purple.

And there was excitement about the upcoming Doctor Who card game by Martin Wallace.

As weeks go, I’d give it a 7.5/10.

 

Musings on Dentists.

When I was a kid, we didn’t go to the dentist much. Only if someone had a really bad toothache, or looked like they might need a filling.

Which was OK with me. Our dentist was Dr Lustig (which is actually pretty funny if you speak German, which we did) and he played Bridge with my dad (so he would entertain me with stories about What Georgie Did At The Table). He had big hairy hands, and he liked to tell us about how HE never used dental anaesthetic on himself and it was easier to have fillings etc done with out it. Usually as he dripped anaesthetic onto my (anaesthetic-resistant) teeth in an attempt to get them numbed up.

My abiding memory is of lying there in the chair, having a wisdom tooth extracted, as the radio played Hurt So Good. Two out of three ain’t bad.

Let’s just say, going to the dentist has never been one of my favourite things. When Dr Lustig retired, my immediate reaction was less “Oh, I had better find a new dentist” and more “OMG! YAY! I DON’T HAVE TO GO TO A DENTIST EVER AGAIN!” which, as it turned out, was both Premature and Irresponsible.

And in the meantime, I have a new dentist who is rather lovely and very understanding of my irrational terror.

And also, they have invented latex gloves so I wouldn’t know even if she DID have hairy hands. And the anaesthetic usually works and I’m not usually in too much pain afterwards. (Except this week. Owwww. And my bank balance. Owwwwowowowow.)

My kids, though, see a specialist pediatric dentist. She’s awesome, and even has pet names for them. And a special chair where I can sit and hold their hands if I get too scared. They get special kisses from Mr Vacuum and sometimes have to have a visit from Mr Bumpy or his friend Mr Spiky. (It is possible that The Bigster feels she has outgrown some of this). And there are stickers, and nitrous oxide with special scent dispensers (they get to choose from chocolate, vanilla, strawberry, orange, blueberry, …). And a playroom with a giant blackboard.

As it turns out, there IS such a thing as Dentist Envy.

If only her name were Lustig, she would be perfect.

 
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Posted by on May 31, 2012 in health