How am I?

May 11, 2020 at 11:16 pm (Fully Sick, general life, Mental illness, Mum Stuff)

First, some kitten content. Specifically, a rambling video of Zoom (and sometimes Zipper) playing.

And now for something completely different. The rest of this blog entry will be all about how I’m coping. Feel free to not read it.

Some restrictions have been lifted, and schools will be taking kids back from next week. It’s clear that a vaccine for COVID-19 is still a long way away, and that governments are under considerable pressure to pretend things are normal and safe before they actually are. A lot of people have been sharing a graph of the deaths from the Spanish Flu, showing a much bigger second wave (and then a rather large third wave as well). Others are pointing out that the restrictions are getting lifted not because things are safe out there, but because there is currently room for more patients in the ICU.

Also, I have diabetes (and an auto-immune disease or two) so my chance of dying is considerably higher than the norm.

Also, those who recover from COVID-19 are just beginning to discover that it has left them with major long-term health problems. Being familiar with long-term health problems, I really really don’t want more.

So no, I don’t plan to send the kids back to school, even though it’s so terribly hard to have them here. They’ll stay home for at least the rest of this term. Although I do plan to arrange some playdates—carefully. My family had a Mothers’ Day get-together yesterday and we joined them after lunch (on the basis that sharing food is extra hazardous), but didn’t see Chris’s side of the family. We’ll visit them for TJ’s 6th birthday day next month, and this coming weekend he’ll have a “party” with precisely 2 friends (held outside, while at the same time Louisette has 1 of her friends over, and they play together inside).

But. Still no school, and for a long time.

Zoom is, obviously, a fantastic source of fun, amusement, and cuddles. Feeding her three times a day (down from six now) is a bit of a hassle, and cleaning up her constant weeing in my bathroom is… not great. But as far as mental health goes, she’s an enormous plus.

I’m the kind of person who would do really well living alone and isolated for months at a time. But that’s not my situation at all. I have one kid who I barely see (luckily for my ability to care for her), and one who wants to be with me, talking with me, for most of his waking hours. So the funny, clever, energetic TJ is… a lot.

My plan for schooling is to set up and loosely supervise the half hour Zoom classes each kid has, plus a little bit of writing practice for TJ (he practises reading with Chris at night). He’s not missing friends too badly (in fact he refuses to speak to them on Zoom), and he’s so obsessive about computer games (including educational ones) that he’s way ahead on both reading and maths.

For Louisette, I plan to do some reading with her each day, and to keep up with her maths assignments.

I’m reasonably happy with how things are going with TJ, but I’m quite far behind with Louisette (who is the one who needs more schooling).

Having said that, one or two good days with Louisette could catch us up on the maths stuff.

So maybe I’m doing well after all. It doesn’t feel like it. I have an alarm set for 9:30am so I can be dressed ready for TJ’s 10-10:30am class (if I remember, I set up Louisette to do Cosmic Yoga at the same time). Then I typically fall asleep until my alarm goes at 1pm and it’s time to put my bra back on ready for Louisette’s class. But a lot of times lately I fall back asleep either during or after Louisette’s class, and I don’t do anything directly with her. Oh well.

Having written it down, I’m not all that far away from my goals. And sure, I’m not getting much done lately, but that’s life. I have tired/useless periods and I have other times when I do well. All I really have to do is wait until I have a good day and hope it lines up with a good day for Louisette.

And I’m missing doing writing, which is a good sign.

Wish me luck, and health. I also had a phone call today about my Disability Support Pension application, which means I had to focus on all my physical and mental issues. It’s exhausting, because I usually try not to think about stuff directly. And I suspect it will lead to more forms, which is terrifying and difficult. Oh well. One step closer, presumably.

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The Virus Diaries: Blurk

April 7, 2020 at 9:24 pm (Cat pics, Fully Sick, general life, Mental illness, Mum Stuff)

My manic phase is officially over.

I’m left with the problem that was predictable all along: How do I cope with this?

I’m not well enough to mind the kids for a full day.

But I have to mind the kids for a full day, every day. For a long time.

So…. ?

The world turns into plus and minus, resource and problem.

I’m angry all the time. Mostly at Chris for being healthy and sane, and having to go to work (in the study) instead of being at my beck and call 24/7 (or more specifically, at the kids’ beck and call).

Last night was bad. I didn’t get to sleep until 5:30am (that is, when the kids were getting up) and I spent a good chunk of the night terrified God would kill me because I had bad (depressed) thoughts, and another chunk rather hoping that this really was the end of the world because there’s just too much pain in the world and everything is awful.

Today wasn’t great either, but I survived it without screaming at anyone or breaking anything, which is pretty much the goal.

Yay.

I’m bored of my end-of-blog categories, so now I’ll just recommend some art (that is, books and TV) each day.

Art of the day: I watched the film Yesterday last night, about a musician who wakes up one day and the world has completely forgotten (among other things) the Beatles. So he remembers the songs and releases them, becoming a massive star. But what about the gorgeous BFF who was always his biggest fan? It’s written by Richard Curtis, full of gentle humour and Beatles music.

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The Virus Diaries: Am I a covidiot?

April 6, 2020 at 7:17 pm (Fully Sick, general life, Mental illness, Mum Stuff)

Seeing people ignoring government guidelines to go have fun on a beach is infuriating. And I’m sooo jealous. There are a lot of people around the world making terrible, life-threatening choices and there is an intense social and legal backlash.

Socially speaking, I recommend not engaging directly with anyone. If you’re certain someone is breaking the law, please call the police and let them decide and/or deal with it. One of the dangers of being disabled is being a target of righteous yet misdirected rage. Every disabled person who’s not actually paralysed from the waist or higher has had someone yell at them for parking in a disabled spot, sometimes in an incredibly scary and upsetting way. Someone on my fibromyalgia support group went shopping during the special disabled-only hours and was yelled at due to not “looking” disabled (I can virtually guarantee she is overweight too—firstly because she has fibromyalgia, and secondly because people see “fat” and assume “lazy” and “selfish”). She also had her two kids with her because she’s a single parent and they are too young to stay at home.

So. Please don’t yell at someone who you think is breaking the rules. You don’t know their story.

Last night I spent a long time looking at the ACT Health guidelines, trying to figure out if our family of four could stand outside the grandparents’ windows to talk to them. I still don’t know. I know there’s a two-person rule for non-essential outings, and I know to social distance during said meeting… but I don’t know if that means we can visit grandparents in the same city. Did I break the law by taking my two kids to visit my mum’s backyard, or is it okay because they were exercising and I was picking up masks?

What about when I was filming the reading of Farting My ABCs, and I took the kids to a variety of pretty locations nearby that I thought would be isolated (I realised belatedly that we should have stayed off paths so it was easier to stay clear of other people walking or riding bikes)? Definitely not essential, and not technically exercise (although it was a lot of exercise for me because walking 50m is a big deal)… but I thought it was okay at the time. I’d better not do anything like that again.

Are we allowed to drive to odd (isolated) locations (in our own state) to exercise? Ugh, I don’t know.

I guess not? Because if everyone did it the entire outside world would be far too crowded. So we’re meant to stick “in our neighbourhood” even on permitted exercise breaks.

Resource of the day: For what it’s worth, ACT Health.

Recommended donation of the day: Salvos. I’ve heard some bad things about Salvos refusing to help some people for “Christian” (that is, anti-LGBTIQA+) reasons but I’m afraid I don’t know anything for sure. But they’re a big organisation with pre-existing connections to a lot of poor or struggling people, so that’s useful at the moment.

Personal action of the day: Sort your pantry and put anything you don’t want anymore out on the street with a ‘free’ sign for others to take.

Recommended hoarding item of the day: Good running/walking shoes. (I wrote this entry before deciding to stop recommending things to buy.)

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The Virus Diaries: Things That Suck

April 4, 2020 at 1:12 pm (Fully Sick, general life, Mental illness, Mum Stuff)

Sometimes it can help to be specific when figuring out what problems to accept and what problems to solve. Since I have an anxiety disorder, I’m an expert at dealing with stress, so let’s dive in. I’ve bolded the ones that apply to me and then given myself advice in italics.

Things That Suck About The Rona

1. People dying.

2. People sick/hospitalised.

3. People afraid of getting sick/dying or sickness/death of their loved ones.

Choose not to prioritise this anxiety unless someone important to me actually gets sick. Remind myself that nothing bad has actually happened to me or anyone I love and end the thought process there.

4. Politicians on the news more.

5. Lots of cool stuff cancelled.

6. Lots of jobs lost, many permanently.

7. Some businesses will collapse, or have already collapsed (sucky for them and for their customers).

8. Some jobs, especially casual jobs, suddenly offering way less hours.

9. Financial stress, both short and long term.

Pfft. That’s normality for us. We’re saving money on car fuel and social obligations at the moment, so that’s kinda cool.

10. Jobs being altered eg working from home, dealing with unfamiliar technology, and often also having kids at home. So even if your job and pay are fundamentally unchanged, they suck at the moment.

We’re settling into a routine now, and I’m coping remarkably well.

11. Kids. At. Home. All the time. Parents don’t get time to themselves at all any more.

Going semi-nocturnal and having Chris and I sleeping in separate rooms has basically solved this. Also Chris can be called on if I’m losing it, which is extremely good to know.

12. Attempting to educate kids.

I’m doing great with that, and the kids are used to it too.

13. Not allowed to do basic stuff such as go to restaurants, bars, haircuts, picnics.

Oh well. We bought a month’s worth of Amazon Prime which is an equally good treat in my book.

14. Stir crazy from being at home for so long.

The yard and (mostly) good weather still has great novelty for me (as you can tell by all the pics of/from the hammock).

15. Worrying about all the people not obeying quarantine rules or guidelines.

It turns out around 75% compliance does the job of flattening the curve very well. But don’t tell them that.

16. Not able to get various things sorted due to isolation rules eg new car, house extension.

17. Dating is extremely difficult.

18. Tension and crankiness due to household being stuck together all the time.

19. Shopping is difficult, and about to get worse.

20. Lack of certain supplies eg toilet paper.

We haven’t run out of either toilet paper or milk yet, so no one’s suffering here. And there’s still plenty of chocolate and lollies.

21. Weddings and funerals have strict laws about how many people can be present.

22. People can’t (for the most part) visit relatives in nursing homes. Or even healthy grandparents in their own homes. Or have grandparents babysit so parents get a break. And the grandparents miss their kids and grandkids.

Yeah, that sucks. But we have FaceTime at least. My parents and in-laws can survive without the kids’ hugs for a bit.

23. Special events such as Passover, Easter, Anzac Day, and Mothers’ Day cannot be communally celebrated.

Ditto. And on the up side, I don’t have to bother going to other people’s houses (which tend to make me sick for one reason or another).

24. Lots of movies delayed.

25. Stressed people treating others badly (especially those in food retail). Including some people choosing to go in full denial who are eating at crowded restaurants, or even coughing or spitting on people.

26. An increase in racist actions against Asians.

My Asian friends are tough. And they know they’re loved and valuable members of the community.

27. Awful conditions for health workers, as well as the risk of death due to being at work.

28. Incompetent governments making things worse.

Always. *shrug*

29. The heartbreaking maths of who gets a respirator when there aren’t enough for everyone.

30. Worried for strangers, and the world. Knowing there are people worse off than us.

There is exactly one thing I can do to help the world right now, and that is to STAY HOME. I have to tell myself that I AM helping, and I’m helping enough, and that the world is not my personal responsibility anyway.

This is… not Zipper. This is our previous cat, Ana, who didn’t mind photography as much.

Resource of the day: A reminder from writer (and extremely crude swearmaster) Chuck Wendig that this is a big deal and you’re not meant to be as productive (or whatever) as usual.

Recommended donation of the day: A medical helicopter service that usually gets a bunch of donations through events… which are cancelled.

Personal action of the day: Face your anxiety, whatever it may be, and try to either accept it or deal with it. Perhaps write it down and then burn it? Accept that you can’t save the whole world, but you can make a difference by staying home (or not, if you’re an essential worker). Remember that staying home is hard.

Hoarding item of the day: If you’re lactose free and having trouble finding milk, it’s time to get into the chemist for some lactease or lactace tablets/drops.

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The Virus Diaries: Aftermath

April 2, 2020 at 12:35 pm (Fully Sick, general life, Love and CJ, Mental illness, Mum Stuff)

I’m going to keep talking about the rejected application for Disability Support today, because it’s a big deal.

The immediate issue is that we need to get new ducted reverse cycle air conditioning (the long-term issue is, “How do we pay our bills?” but you probably guessed that). In Australia, ducted AC is considered a luxury (we didn’t have it on our list of must-haves when we bought our house, but we were pleasantly surprised that it happened to be there). Unfortunately I’m extremely sensitive to heat due to a combination of auto-immune diseases and fibromyalgia, so it’s a medical necessity for us.

Do I sound defensive? I feel defensive. Our AC broke rather badly quite a while ago, and even with my health issues I feel like a spoiled brat insisting on a system that will cost around $8000 to replace. That’s more than I usually make in a year, and of course a lot of people around me are saying, “Are you SURE you NEED it?” (That Gaslighting entry just keeps popping up, doesn’t it?)

So I feel a little better now that winter is on the horizon and our entire heating system is a tiny fan heater the size of our cat—and three hot water bottles. I actually handle cold quite well (a major advantage of being overweight) so the focus has now shifted to what Chris and the children need, which I’m much more comfortable advocating for. Louisette in particular feels the cold.

We applied for one form of financing yesterday, and were rejected. Today we’ll apply for another, our best remaining option. If we’re rejected for that, we’ll be in trouble. Thanks again, Centrelink!

There are five bits of good news:

1. I did some mid-week fiction writing last night, so I’m feeling good about The Floating City. I MIGHT be able to finish it during the school holidays, maybe.

2. TJ has decided he no longer needs company when going to the toilet. Fantastic. He’s also stopped singing “The Lion Sleeps Tonight” and… I’m not missing it.

3. I respond well to crisis situations so at the moment I’m mostly feeling okay. I went through about forty pages of Impairment Tables last night and my impairments add up to 35 points (excluding one condition that I’m getting new meds for today), so theoretically it should be simple to get proof for at least 20 points’ worth. I’ve made a phone appointment with my doctor for tomorrow.

4. We have almost completely recovered from the various expenses of last summer’s apocalyptic events (for us, the golfball-sized hail was the most expensive part). So… yay.

5. Staying in isolation means less fuel for the car, so that’s saving some cash. And of course there are no expensive social events, which is helpful too (financially speaking) even though our friends aren’t the type to do anything more expensive than a pot luck dinner (and about one movie a year).

There’s something about concrete that makes Zipper start going belly-up.

Resource of the day: If you get regular medication, you chemist will probably arrange delivery. Mine does.

Recommended donation of the day: Make your street brighter by displaying bears and/or rainbows. The bears are for kids to spot as they walk around their suburbs. The rainbows are to say that things will get better.

Recommended hoarding item of the day: Money? Money is super useful. This isn’t one of those ‘cash-free’ apocalypses you read about.

Tomorrow: My Apocalypse Garden

PS I’m still editing the videos I took of my kids while I read Farting My ABCs. There are some classic moments in there.

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The Virus Diaries: Rejected

April 1, 2020 at 4:40 pm (Fully Sick, general life, Mental illness)

“After considering your circumstances, we have made a decision that you are not eligible for Disability Support Pension. To be eligible for Disability Support Pension, you need to have an impairment of 20 points or more under the Impairment Tables. These tables are used to assess how much your ability to work is affected by any permanent medical condition that is fully diagnosed, treated and stabilised. You have been assessed as not having an impairment rating of 20 points or more.”

Thus ran the message I received in response to the Disability Support Pension application I filed in February.

The good news is that my various conditions are diagnosed, treated (with varying levels of success) and stabilised. One of them is about to get a new treatment which is promising, but the rest are pretty useless.

I’m way over 20 points of impairment, but now I’ll have to gather more data to support that, then apply again, then wait months for the next response.

This is not an unusual story. Many people with fibromyalgia (and other conditions, but fibromyalgia is relatively new so it makes it easier for people to deny its existence) wade through paperwork and expensive specialists for years before getting approved (which we’ve already done for an average of 5 years before getting diagnosed). Drowning disabled people in complicated tasks and paperwork is a great way to save money, because loads of them are too sick to keep applying.

I have at least one more round in me. After that, we’ll see.

I’ve printed off thirty or so pages of Impairment Tables to go through item by item, and then take to my GP. I’ll also need to figure out what form to use for an appeal, probably by calling Centrelink. At the moment, most of Australia is already on hold to Centrelink. Wait times are at least two hours. Well, fine. It’s not like I was busy attempting to educate my kids or anything.

Resource of the day: Anything that’s not Centrelink.

Recommended donation of the day: I’m not the only person dealing with Centrelink at the moment. Send some chocolate to someone you know who’s “lucky” enough to be abruptly unemployed.

A lot of people are suddenly discovering that when circumstances beyond your control send you to the dole queue, it’s not nearly as fun or helpful as you would think.

Personal action of the day: Don’t get sick. (I’m just full of usefulness today, aren’t I?)

Recommended hoarding item of the day: If you’re chronically or seriously ill, make sure you keep all your medical paperwork. If nothing else, it’s another handy source of toilet paper.

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The Virus Diaries: Welcome to Pain, Healthy People

March 28, 2020 at 3:41 pm (Fully Sick, general life, Mental illness)

trigger warning: discussion of depression and suicide.

 

One of the facebook groups I’m on (two in fact) are for sufferers of fibromyalgia and chronic fatigue—all-encompassing, usually permanent conditions that change everything for the person who is sick.

A few people have taken a quiet or not-so-quiet satisfaction in the way healthy people, ordered to stay home and relax, have freaked out. Here’s one person’s take, used with her permission:

I wrote quite a bit about the weird mental uncertainty of this COVID-19 moment in my gaslighting post, and it was natural to talk about fibromyalgia there too. One of the surprising bits of the chronic illness experience (definitely including mental illnesses) is how hard it is to believe that it’s really happening and your life really is changed forever (let alone how hard it is to get family—especially close family—and medical professionals to treat you seriously).

Now the whole world is turned upside down and inside out, and there are oh so many people sitting at home going mad (some literally; sorry about that) and struggling with thoughts of, “Is it really that bad? I feel fine. Would I even get sick if I was exposed?”

Disabled people all over my twitter were pointing out earlier this year that the message of, “If you’re healthy then you’ve got nothing to worry about!” was also saying, “Don’t worry, only old people and sick people will die, and they’re not really people so THAT’s fine.”

Going further back, let’s talk about Robin Williams and Stephen Hawking: two brilliant men; one who was mentally ill and one who was disabled. So when they died, there were a LOT of images like these:

And I’ll be honest: those are beautiful images, and my heart does a little leap for joy to think those two beautiful men might be free of pain.

But.

As many pointed out at the time, both images also say that people who are depressed or disabled are better off dead. Which is especially bad because so many people really do, in their heart of hearts, believe that to be true.

Some people believe it in a semi-noble way, being empathetic or at least trying to be. Hopefully that sense of empathy leads them to take useful action in their lives, like making their house wheelchair accessible or voting to increase funding for groups that help the disabled. Others are purely selfish, and want to pay less tax—and that means cutting funding to those less fortunate and quietly hoping they just vanish.

And let’s be honest. For the most part, vanishing is what we do. People who get sick stay home. People who are chronically ill soon realise that talking about their normal life (sprained my back brushing my hair so now I can’t sit up for two weeks) get real boring—and real depressing—real fast. So if they’re smart, they stop talking about what’s actually taking up the majority of their time and brain space (pain, struggling to pay bills, etc) and keep their conversation to acceptable bounds. Most of our friends aren’t able or willing to accommodate our needs, or don’t understand that our shy request to have people come to our house rather than theirs might be because we have suppurating boils that might bleed through our clothes at any moment so we’re scared to go out. Or that being in a room above 20 degrees gives us diarrhea for the next three days. Or that driving our car makes our wrist throb for the next week because we’re too weak to safely change gears.

So we just… don’t show up. And we’re isolated and scared and in pain, and very very poor (which makes us feel utterly worthless).

Welcome to our world, healthy people. I hope this helps you to understand the sick a whole lot better when the world is “normal” again.

And I’ll try to be more honest about my needs, too.

I frequently pretend to be super lazy so I don’t make people uncomfortable eg. “Hey Felicity, got any cool plans for the weekend?” “Me? I’m gonna make Chris do some gardening and then I’m going to nap. It’s going to be awesome.” when really I WISH I could stay awake a full day, and weed the garden myself, and maybe even actually play with my kids or *gasp* go out and DO something fun.

Anyway, here’s a cat looking adorably pissed off:

Unfortunately, although chronically ill people might be professionals at staying home looking at the wall, there are other bad things going on for us: difficulty getting medication, the loss of support staff and services, difficulty getting the very specific foods that our digestive systems can take, etc. And of course no visitors.

Resource of the day: Most chemists are now delivering regular medications. If you’re immunocompromised or over 60, consider calling and asking them for assistance.

Donation of the day:

A friend of mine makes gorgeous hair bows for primary age and under girls. Let me know if you’re interested and I’ll hook you up. She also has fibromyalgia… and three kids suddenly all at home. Ouch.

Her web site is here, and this is a bow I bought off her, that Louisette adores.

Personal action of the day: Reduce the number of times per month you go shopping, if you possibly can.

Hoarding item of the day: Having said that, Aldi has $50 fire pits (and $70 camping stoves) which are fun AND will be lifesavers if the power gets interrupted in winter (very unlikely to last more than an hour but I’m hip to the apocalypse baby). I literally got one. Plus if we’re still isolated when TJ’s birthday comes around, that + marshmallows will make an epic party for him.

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The Virus Diaries: The Truth About My Routine

March 27, 2020 at 12:09 pm (Cat pics, Fully Sick, general life, Mental illness, Mum Stuff)

Not so long ago, I wrote a post on sanity, including ten tips to stay sane while self-isolating. Let’s go through them and see if I am actually following my own advice (unlikely, since it’s designed for healthy people and I am really not healthy at all).

1. Do something. Whether it’s your job, journalling, writing a novel, gardening, or whatever, try not to slide into the utter nothingness of pure unfettered laziness for too long (it gets old after about three days, and it can be hard to snap out of it). Wear pants. Shower. Eat breakfast at breakfast time. Cook proper food and clean the kitchen every night. A lot of people are celebrating “Formal Fridays” where they dress up for the day and post photos online.

Lol nope. People with chronic illness will know what I mean when I say “couch days”. Some days you can’t do anything, and barely stir from the couch. It’s not fun, even though I bet it looks like it from the outside (to ignorant healthy people, who wish they could do more of nothing… sick people WISH we could have the dignity of a steady job).

I haven’t worn pants (jeans) since Boxing Day 2018. I remember that date very clearly, because it was just over a month since I’d had major abdominal surgery, and it was very exciting to be able to wear pants. The next day, I was back in hospital for a post-op infection and had to get operated on again. It wasn’t definitely the fault of the jeans, but I haven’t attempted jeans since. My stomach still has major issues, and I’m not that big on jeans anyway. Anyone who knows me in real life will know that I wear ankle length skirts every day. It’s the closest thing to a hospital gown, if you think about it (except for the gap in the back): comfortable and loose-fitting.

I wore a bra briefly yesterday and it really hurt my back. Not because of the bra, which doesn’t even have underwire, but because my back is that dodgy. So I don’t even do Wear-A-Bra Wednesday.

I’ve gone semi-nocturnal, waking around midday. And actually that’s working really well.

2. Stop. Take at least one day a week off, whatever that means for you. Enjoy that lazy Sunday vibe, stay in your PJs all day, eat nothing but cereal, do no schoolwork, whatever. Apart from anything else, this gives you something to look forward to.

I’m very excited about the weekend, when I shall cheerfully shove all parenting responsibility onto Chris for the full two days, and hopefully get some of MY work done. At the moment I need writing more than a true day off.

3. Do healthy stuff. Eat well (especially fruit and vegies, or things will not go well in your bathroom), and figure out a way to exercise (walking, running up and down stairs, playing soccer with the kids, whatever). Make yourself get up at a certain time each day (with one ‘sleep in’ day a week because sleeping in is awesome). Get some sunshine if you possibly can (I’m assuming you at least have a balcony). It really helps your body feel like you’ve done something and can therefore sleep at night.

Yeah nope. Never done much of that (since I got too sick for most of it) and certainly not starting now.

4. Be polite no matter what.

Hmm. So far, mostly. Wanted to punch Chris in the face today and instead simply told him that I was angry and he apologised. So that’s a moral victory, I suppose.

5. Pick your goals wisely, and change course as required.

Yeah, that I do.

6. Failure is always an option.

I do that too.

7. Remember humans are amazingly adaptable, even you.

I’m astonished at how well I’m holding up so far. Of course, I’m also aware that there’s a manic episode happening. When I come down things may get rough. If I look after myself as much as possible while manic, the fall won’t be as hard.

8. Do fun stuff.

It has been fun to pour my creativity into stuff like the obstacle course (which Louisette still likes and TJ still refuses to do) and a Secret Project I’m prepping for the holidays.

9. Humour.

Always.

10. Whatever works.

Always.

My normal weekday routine pre-COVID-19:

7-9am: Get up, get kids ready for school, put a load of washing on, drop them at school.

9ish-12ish: Immediately change into PJS. Watch TV and/or write stuff. Lunch.

12ish-2:30ish: Nap.

3-6: Fetch kids, immediately change into PJs, play wii with TJ, make kids shower, prepare dinner.

6:30-8: Dinner and bedtime routine.

8pm-11ish: Watch TV and/or write stuff. Go to bed.

And now:

12ish: Wake up, eat breakfast, do a load of washing, fetch kids’ lunches. (Chris gets the kids breakfast around 7am and then goes to work in his study.)

1-4ish: Louisette is at her best (it’s her Ritalin window) so make sure to do her schooling (currently just the obstacle course) and make her shower in this time window. Also do TJ’s schooling (which he begs for) and shower (which he begs not to do, but it only takes 60 seconds once he’s in).

3ish-6ish: Write blog, usually (in bits and pieces between other things) and play wii/watch NumberBlocks with TJ while Louisette watches TV in her room.

6:30-8: Dinner and bedtime routine.

8pm-1am ish: Watch TV and/or write stuff (usually too tired to do any writing). Go to bed.

This is Louisette working on the obstacle course.

 

I hope looking at my routine makes you feel better about yours. Honestly, I really am doing amazingly well. Since Chris is working form home now, which means 2 hours extra in his day, it’s time for him to start doing useful stuff with the kids. So he takes care of showering the kids now (YAY). And he’s home at 5pm instead of 6:30, which is VERY helpful since by then I’m too tired to play on the wii with TJ, but TJ is too tired to amuse himself.

Resource of the day:

A lot of people are encouraging kids to get into letter-writing or play on playgrounds. Please don’t—playgrounds and paper are both very able to carry COVID-19 for several days (possibly as much as 17 days).

Donation of the day:

People still have medical expenses. Have a look at GoFundMe and pick a winner.

Personal action of the day:

Use gloves when opening your mail (or leave it somewhere safe for at least a week before opening it), and carefully throw away envelopes.

Hoarding item of the day:

Tongs? Since gloves are probably out of stock everywhere.

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The Virus Diaries: Sanity

March 22, 2020 at 2:54 pm (Cat pics, Fully Sick, general life, Mental illness, Mum Stuff, Writing Ranting)

There are two major mental challenges when it comes to staying in one’s home. In no particular order they are:

1) Spending time with other people.

2) Not spending time with other people.

Today is all about my advice on staying sane! And yes I’m aware of the irony of a mentally ill person telling others how to chill.

My first recommendation is to recognise that all of this is really, really hard. Different people will struggle with different aspects, and will cope (or not cope) in different ways. Some people will cope really well, but don’t let that make you feel bad. They definitely suck at other things which aren’t relevant right now.

If being with your immediate family (or housemates) 24/7 is hard for you to deal with, I recommend being honest (ideally before you snap and scream your truth at people) and figuring out a way to get some space. Camping in the yard? Going nocturnal (if your housemates are diurnal)? Trading people with one other household? Getting a TV for your room so you never have to share the remote? Personally I’m really enjoying having Chris sleep elsewhere (hello darling), because it’s super annoying that he falls asleep more or less instantly every night while I have nightmares, toss and turn due to muscle pain, etc.

If being out of contact with your social circle is the worst part for you, then look into some of the creative ways people are connecting at the moment: Zoom is very popular, also Skype, twitter, and facebook. Also people sometimes sing together from their balconies, or make a giant outside circle (6 feet apart) to chat of an evening. Or you could actually talk on the phone.

And of course you may be one of those lucky ones who suffers from both #1 and #2 above. Good luck to you.

 

I’ve had a few very lonely times in my life, and I have a pretty good skill set for this kind of thing. The most notable ‘lonely time’ was when I was eighteen. I lived in Indonesia with Indonesians for six months, and no one spoke English so I didn’t truly ‘talk’ to people for all that time. Before that journey I was good at Indonesian in the sense that I had an A+ in Year 10 Indonesian classes. By the end I was more or less fluent.

That was the second time I’d been to Indonesia—the first was a fortnight as a blonde-streaked and adorably pimply sixteen year-old (with a group of other young and young-ish people). For your amusement, I dug up this Real Physical Photo of me being utterly distracted by a baby animal (I haven’t changed much when it comes to cute animals):

Pretty sure that bracelet spells “Jesus”. Not much is changed there either (nowadays I have a tattoo of a cross, and I still want to make the world better).

I think I had one phone call with my family during my six-month visit to Indonesia. I didn’t have a mobile, and the place where I stayed had a single landline that was rarely used. This was in the distant time of the year 2000. There was one TV at the place I was staying which was certainly not for my use. There was no Netflix. No social media. No internet (except internet cafes, which I visited once a week). I had a discman (a tiny battery-powered CD player) and a few CDs, which was all the music I had, and all the technology too. During that time I wrote my first full-length book about my experience. In the first draft it was over 200,000 words… all of them written freehand.

In case it wasn’t obvious, writing is my #1 coping method. Even if you’re not a writer, journalling (or even blogging) can be really helpful to process life, especially a big experience like isolation or quarantine. I do genuinely recommend you try it. Which brings me to my first idea of ways to cope:

1. Do something. Whether it’s your job, journalling, writing a novel, gardening, or whatever, try not to slide into the utter nothingness of pure unfettered laziness for too long (it gets old after about three days, and it can be hard to snap out of it). Wear pants. Shower. Eat breakfast at breakfast time. Cook proper food and clean the kitchen every night. A lot of people are celebrating “Formal Fridays” where they dress up for the day and post photos online.

2. Stop. Take at least one day a week off, whatever that means for you. Enjoy that lazy Sunday vibe, stay in your PJs all day, eat nothing but cereal, do no schoolwork, whatever. Apart from anything else, this gives you something to look forward to.

3. Do healthy stuff. Eat well (especially fruit and vegies, or things will not go well in your bathroom), and figure out a way to exercise (walking, running up and down stairs, playing soccer with the kids, whatever). Make yourself get up at a certain time each day (with one ‘sleep in’ day a week because sleeping in is awesome). Get some sunshine if you possibly can (I’m assuming you at least have a balcony). It really helps your body feel like you’ve done something and can therefore sleep at night.

4. Be polite no matter what. Small annoyances built up fast, whether it’s the noisy way your kid eats or societally institutionalised sexism (exemplified by your husband dropping his dirty socks on the floor). Blame coronavirus, not each other. Save your big fights for a time when you’re allowed to go and stay at a friend’s house if you need to cool down. The most important thing is not to burn any bridges with the people you love. So be nice. Seriously. Hating the sight of your family is a side effect of home isolation, not a sign it’s time for a divorce.

5. Pick your goals wisely, and change course as required.

Even under the heading of ‘writing’ I have a lot of very different things I’m working on:

a) Dr Jekyll and Mr Hyde. A super exciting fun shiny new book… which is currently not coming together, so I’ve moved it to the back burner for now.

b) The Floating City. A climate change/scifi book that has given me a huge amount of grief but is ever so close to finished. I’m currently going through the sensitivity readers’ comments (usually small facts or phrases so not hard to change) and then I’ll be editing just the ending. But I’m forcing myself to go slow because I often rush endings and I don’t want to do it for this book.

c) Flight. Another really fun book, which needs an edit and a couple more chapters (around 20,000 words). I was going to enter it in a contest last year but I got the date wrong and as a result it wasn’t ready in time. So I’m aiming for this year instead. I have had a lot of excellent feedback from about 5 different places, so I need to go back and find it all, then deal with it. A lot of it is major criticism that will require big rewrites… but the book itself is really good and really fun, so that will be enjoyable-although-difficult when I get to it.

d) Blogging. It’s taking a lot of my mental space at the moment, which is good because I feel like I’m doing something worthwhile (and it’s bad because the rest of my writing is suffering). And it’s free therapy. And technically work, since writers are meant to be bloggers too these days. So I do feel kinda righteous. At the same time, I’m writing this on Saturday to post Sunday so I can take Sunday ‘off’ blogging.

I haven’t got around to doing any schoolwork with the kids today, which is fine. It’s Saturday. I was planning to at least do a fun activity with them, but so what? I didn’t tell them, so they’re not disappointed. The great thing about setting goals for myself is I can let myself off the hook as needed.

6. Failure is always an option. If you end up in a fetid pile of dirty washing, buck naked and screaming at your two year-old that you want a divorce… that’s okay. It might look and feel like the end of the world, but when things are normal again you’ll go back to normal too. If you fail in your goals, wallow for a day, think about whether your goals need to be altered, and then start fresh.

7. Remember humans are amazingly adaptable, even you. Your first ten minutes of homeschooling may make you want to give up on humanity altogether, but in the usual pattern of good and bad days and good and bad moments, you’ll get better at doing this. So don’t extrapolate the pain of that ten minutes into the weeks or months of isolation ahead. Change hurts, but you’ll settle sooner or later into some kind of routine and it won’t hurt this much all the time. I promise.

8. Do fun stuff. Bake stuff you’ve always wanted to try, or watch that series everyone was talking about three years ago. Get day drunk in your living room. Whatever works for you (and doesn’t cause long-term harm).

9. Humour. There are a bazillion and one jokes and songs about the coronavirus now. Dive in and laugh at all of this nonsense.

10. Whatever works. The above list is aimed at healthy people. Those with health conditions that flare up randomly will need to adjust day by day and often hour by hour. But that was always true. And if wearing PJs every day works for you, go for it!

It might not look like it, but this is a picture of TJ. He asked me to take it so… well, there it is.

Resource of the day:

Someone else’s take on how to work from home.

Stuffed Capsicum (serves two, or one hungry person):

1. Slice a capsicum in half and scoop out the seeds and ribs so it makes two little bowls. Roast them facing down for ten minutes at 200 degrees celcius.

2. Mix a small amount of cooked rice with crushed nuts (you can smash them to bits yourself with a potato masher), chopped tomatoes, basil, garlic and a teaspoon or so of either cream, butter or oil. You can also put in tuna, cooked chicken pieces, tofu, or almost anything.

3. Flip over the slightly-cooked capsicum halves and fill with the mixture. Cook another 5-10 minutes, top with grated cheese, and eat.

Recommended Donation of the Day:

Support a musician on Kickstarter. Musicians are losing gigs and money at a really high rate, and music is one of the things that makes life better during isolation.

Recommended personal action of the day:

Carefully (because you don’t want to wet or break them) clean your TV remotes.

Recommended hoarding item of the day:

Buy another TV. Unless you already have one TV per person in your house, this will help you stay sane.

* * *

For those following along with the Castle Project, one of the vacant lots I had my eye on (unfortunately it’s impossible to track the owner) is now under construction. I reached out via the email on the builder’s notice, but no joy there I think.

I need to start applying for grants but I… haven’t yet. The tabs are open, however. Maybe this week.

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The Virus Diaries: Gaslighting

March 21, 2020 at 1:33 pm (Fully Sick, general life, Mental illness, Mum Stuff)

If you haven’t heard the term before, “gaslighting” means convincing someone that they’re crazy, irrational, or mistaken. In its original form, that means changing a person’s environment without their knowledge. I’m talking mainly about the ‘fear versus safety’ dynamic currently playing out in every family and school and workplace right now. There are four factors that make gaslighting particularly potent (and deadly) during a pandemic.

1. Germs are invisible.

Seeing is believing, and that makes it really hard to take the coronavirus seriously. It’s particularly tricky because the symptoms are so similar to a cold or an ordinary flu (both of which are a big part of normal life and no big deal unless you live in a nursing home) AND a significant portion of people are transmitting the virus while having no symptoms whatsoever.

2. The most concerned people aren’t the ones we like to listen to.

Coronavirus hits the elderly and the immunocompromised the hardest, and our capitalist society puts very little value on those groups. It’s a harsh truth, and at the moment it’s a deadly one.

Look, I’ll be honest. It feels a lot less tragic to lose a 90 year-old than a 9 year-old. Their lives are of equal value, but one of them has a lot more of it left than the other. I understand that. I also understand that older people (NOT all of them) have a reputation for being morally behind the times—racist, sexist, etc—and it’s tempting to think that losing a higher proportion of older folk might mean an overall gain in human rights, as younger people are more likely (again, not all of them) to vote in a moral than a purely self-motivated way. It’s an interesting argument in part because of how utterly awful and immoral it is, and from the supposedly “moral” side of politics too.

I literally heard people talking recently `about how the world would be better with less old people in it. That is not okay. Not now, not ever.

Old people are undervalued in our society. Let’s not be awful people about this, okay? Please?

Now (*rolls up sleeves*) let’s talk about the other major invisible group in our society: the disabled and chronically ill, most of whom are immunocompromised or otherwise vulnerable (eg dependent on other people) in a hundred different ways. I’ve mentioned I have fibromyalgia and diabetes (among other conditions). The death rate for diabetics who contract COVID-19 is currently around 10%. That’s a whole lot better than, say, a 50/50 chance of survival, but it also means that if I get this, there’s a one in 10 chance I will literally die from it. That’s not cool!

Fibromyalgia is one of the most annoying conditions in the world. Allow me to describe it in two different ways:

a) Fibromyalgia is a disease of the nervous system that affects 2-5% of the population of developed countries (including Morgan Freeman). Because it’s based in the nervous system, it causes widespread muscle pain, migraines, muscle twitches, joint pain, and depression. Some people are able to function despite their fibromyalgia. Others (like me) are permanently disabled. There is no cure.

b) Fibromyalgia is a ‘wastebasket diagnosis’ given to people—mostly overweight and clinically depressed women—who complain of widespread pain but show no physical signs.

Can you spot the difference? Which do you think is a more accurate description—the one that makes it sound like a genuine disability, or the one that makes it sound like feeble-minded fatties are whining about imaginary issues?

A lot of “invisible illnesses” (migraines, depression, Chronic Fatigue Syndrome) cause sufferers to get an extra level of issues due to people struggling to believe their conditions are real. Yes, a lot of people are just awful (especially when one tries to get some kind of financial support—immediate family members and Centrelink are sometimes wonderful but often the greatest gaslighters in the world) but I do understand that our minds instinctively shy away from long-term pain in others. It’s hard for me personally to hold onto the fact that Australia keeps innocent children in offshore detention in order to shirk our international responsibilities and to deliberately aim to get a reputation for cruelty. Aren’t we the good guys? Surely there MUST be a good reason, or it’s not as bad as it sounds, or something?

In the same way, it’s hard for people to accept that another innocent person is going to suffer physically and financially for the rest of their lives. So it’s natural, in a way, to choose not to believe that fibromyalgia (or whatever) is actually real. Or if it is real, then it’s natural to believe that’s it’s not really as bad as people say. Or if it is that bad, then it’s natural to believe that the sufferer must surely be able to do something to fix it. (Which is where you get doctors telling people to lose weight for EVERY condition imaginable, even though studies show that dieting does more harm than good and that it’s possible fibromyalgia actually causes the weight gain in the first place.)

All of which is to say that people like me, with chronic health issues, are often treated like we’re irrational even when we’re not. (I could tell a hundred painful and shocking stories of family members and/or medical people simply choosing to believe that fibromyalgia isn’t real. At all.) Our suffering is not respected. So when we hear, “Don’t worry about COVID-19! Healthy people will be fine!” we hear, “Only worthless people will die—and lots of them! So THAT’S fine.”

And of course when chronically ill people say, “This is serious. We’re dying!” simple denial comes into play and there’s a knee-jerk response of, “I shall not live in fear! I shall take my family out to a crowded restaurant and encourage others to do the same!” Plus of course, the knee-jerk anger response: how dare chronically ill people—already a burden on the taxpayer, the slackers!—so callously disregard the needs of The Economy.

And yes, the economy matters. People suffer when the economy suffers. I’ve personally lost several thousand dollars of a pathetically small income already, and there are MANY others in much worse positions.

So, it’s complicated. Which makes gaslighting easier.

And of course there’s a certain number of people who are already fond of disregarding any scientist. It’s become a matter of pride. Which is, obviously, dumb. All the more so because skepticism is associated with intelligence and sometimes (often) it just… isn’t. But when people’s in-group, or sense of their own intelligence, or general identity gets tied up with “skepticism at all costs”… it’s a very hard thing to stop.

3. Fear isn’t fun. Brave is fun.

Writers all know that a story must centre around an interesting and ACTIVE protagonist. Because no-one likes solving a problem by doing nothing. That applies to both fiction and real life. It’s surprisingly hard to sit at home and do nothing (or work from home, or home-school kids), and soon a person starts feeling stupid and wants to do something active. So instead of fighting the virus, we start fighting the associated anxiety. We prioritise normality and the economy and Not Living In Fear rather than doing the less-glamorous thing—staying home.

4. I can’t remember what my fourth point was. Darn it. I’ll edit it in when I do.

 

In summary, don’t give in to fear, but do change something you can change, whether it’s self-isolating your entire family or just washing your hands for longer than you used to.

Resource of the day:

A video running the classic “powder that glows under UV light” experiment. It’s quite fun and kid-friendly (except for a couple of seconds of people fighting over toilet paper). Also it goes for ten minutes so that’s ten minutes of home schooling done for the day. Don’t watch it if you have obsessive-compulsive tendencies.

Recommended donation of the day:

Oxfam is a great poverty-oriented charity. You know anyone poor always suffers when things get worse around them, so help Oxfam help them. It’s super easy to make a one-off donation.

Recommended personal action of the day:

Wash your hands. It’s an oldie but a goodie. Twenty seconds, with soap and lots of rubbing.

Recommended hoarding item of the day:

Puzzles. Gotta have something to do, amirite?

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