Habits and resolutions and such

When I started writing this in mid January, the papers were still publishing stuff about resolutions. Like this one from the Guardian on “habit stacking” and one from the Washington Post on resolutions in a pandemic, and the need to be kind to yourself and set small goals. These both argue that the big resolution is a recipe for failure, both in general and also in specific times of great stress. You know, like pandemics.

So, this makes them more applicable than normal to the spoonie. But still not entirely. I was looking at that one about habit stacking, and I believe I have already done that. I needed to make some new habits to cope with being sick, and I have succeeded in managing changes to keep myself reasonably clean. And I did it with the habit stacking method: add just one small thing to a routine.

Action: She advises tying the new habit into an established routine that won’t change – such as meditating in the morning (new habit) before you brush your teeth (old habit).

“If you set up a habit based on something that may change – such as exercising in the middle of the day, then when you go back to the office, you may not be able to keep up that change. Best keep it small and tie the habit into something that won’t change, like getting up in the morning.”

(Dr Breanna Wright, a behavioural change expert from Monash University, via that Guardian article.)

It works well as a concept, but there are limits to the amount you can stack. And I think I’ve hit mine for the morning routine. This is how it goes:

  • Wake up. Check time to see if I should try for more sleep, or start getting up.
  • Contemplate dreams and emotions, maybe do a couple of minutes of emotional experience & de-escalation exercises that my counsellor taught me.
  • Stretch. Consider if I feel well enough for some strength exercises. Do from zero to 4 rounds of different types, depending how I feel.
  • Bathroom. Check feet for fungus (common in the immune compromised); check eyes for blood (my own amyloid issue, a daily reminder that I’m not actually dying after a very serious scare); check peak flow (asthma). Use creams, eyedrops, inhalers or not as required.
  • Wash face, and moisturise.
  • Comb hair if it’s got long enough to need it.
  • Put on day lounge PJs or presentable loungewear, depending on plans. (Plans may very well fall through, but at least I’ll be prepared with an unstained T-shirt and pants with no holes. I won’t have to get changed to go out. SPOONIE LIFE HACK!)
  • Sit on edge of bed, maybe do another strength exercise or two if I can and if I haven’t already.
  • Take daily meds.
  • Maybe tidy a thing. I’m trying to add this one in. It’s going kind of so-so.
  • Leave bedroom!
  • Feed cats and start coffee, unless the Bloke has already done this. Maybe do another strength exercise or stretch if I haven’t already. Alternatively, take two minutes to tidy kitchen and/or start dinner prep – get out pans, veg, chopping board etc. Alternatively again, slump exhaustedly against the kitchen counter while the water boils or coffee reheats.
  • Crash on couch with coffee. Make some journal notes.
  • Sip coffee and start a game. I am SO VERY DONE now. I am not leaving this couch unless the house catches fire. If the Bloke speaks to me, it’s maybe 65% odds that I can actually still use words to reply.
  • After an hour’s rest minimum, get up and get breakfast. Once the second mug of coffee is down, consider if I need panadol.

The advice is to hang your new habits onto old ones, and really, my getting up in the morning routine is pretty full. Some of these things already lapse some of the time, because I have no energy. I’ve been vaguely contemplating growing my hair back (reclaim something I lost to this illness!), but would I have the energy to brush it often enough? So maybe I can’t add another thing and this is full to capacity. But the method works: even if I miss a thing, at least I’m aware of it. They’re all in the automatic memory bank, so I don’t need checklists and reminders.

This reminds me of another quick SPOONIE LIFE HACK!: alternative locations. If I skip the moisturiser and eyedrops, I have some in a tray next to my couch nest. And I’ve already noted that some exercise can happen at different times – before getting up, before leaving the bedroom, while the kettle boils. Weights live in the bedroom, and I don’t keep spares of those, but I have alternative options for things to do.

Since I’m “retired hurt”, I don’t have a work routine to hang things on. It’s more like biological routines – bathroom breaks, meals, sleep. The day from 10:30am to 4pm can be vaguely decent, or filled with exhaustion, headaches, PEM symptoms, and sheer donwannas – which may or may not be my brain rationalising feeling too exhausted to stand up into a preference rather than a necessity. Nope nope nope not moving. I make sure to space out my commitments and appointments to give me a rest day beforehand so the odds of a good day are better, but there’s still no guarantee. I’ve tried hanging habits on these – like, “whenever I go to the bathroom, I will also do X thing” – but it just doesn’t work. My energy levels are so unreliable.

The evening is more reliable, and I have a routine there that includes enough time to recover from the effort of it before trying to get to sleep. I won’t go into the detail of that; I’ve bored you quite enough with the morning. These things are not interesting. Sorry.

Anyway, January was going reasonably well for a bit. I bought some storage containers and started reorganising my yarn stash. I was especially hoping to get stuff out of the dreaded pile at the end of the couch. But then I managed to hurt myself, cunningly tearing a calf muscle by dint of standing up funny or twisted or something. So there went those plans. I’ve spent the last week on crutches and now I have to put my physiotherapy exercises somewhere into the mix.


SPOONIE ADVICE: do not injure your leg. I think I gave myself PEM from all the extra movement required. There’s using different muscles, having pain and avoiding pain, and just actually moving more than usual because of the injury. You’d think it would be less, but if you have to hold a crutch in one arm, you have to go back and forth to get a plate, and then a glass or mug instead of only one trip to the kitchen and back. The Bloke has been very helpful, but he’s not here 24/7 and for all his Igor impressions, he is not my servant.

This is not the Bloke



How my 2020 was both like and unlike everyone else’s

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A New Year’s Eve roundup that weirdly decided it wanted to be alphabetical. I’ve been meaning to add more pics and links but it’s already NYE so too late now.

Anxiety. A huge theme for my year. Everybody has it, it seems. It’s been an incredibly shit year, from bushfires to COVID, not to mention all sorts of politics like Trump and Brexit. But my anxiety pre-dated COVID-19, and has been a right bastard. I’m not quite sure at this point how much I’ve actually recovered and how much I’ve just retreated away from my various triggers. A bit from column A and a bit from column B, for sure. I seem to have got my meds sorted adequately, if not brilliantly.

Bathrobes. Sorry to be American, but anyway I bought two dressing gowns. Everyone is doing it. I’ve never been so on trend. To be fair, though, personal Blogging is so twenty years ago. And I do plain html, none of your fancy block stylings. Still daggy then.

Cruise! It’s hard to remember now, but I did in fact go on a cruise, which is quite possibly my last one ever considering how exhausting I found it. Not to mention what may or may not happen to the cruise industry. It was just an Aus/NZ trip back in March, so luckily not very risky. Cruise lines and cruise lovers have been hit very hard this year. I’m not actually mad crazy for cruises, but it is one of the few ways a person with ME/CFS can manage some travel. My fantasies of cruising the fjords of Norway, the Baltic sea, and river boats on the Rhine or Danube or Mekong now are fading off into the distance.

Deliveries. I’ve been getting groceries delivered for a long time now, but this has really ratcheted up since COVID. The Bloke is getting more deliveries Literally all of my Xmas shopping has been online. I think we can all relate to this one. Make Jeff Bezos more wealthy!

E-books. I am religiously checking the kindle daily deal. (This is actually my main means of making Jeff Bezos more wealthy; I do not shop on Amazon otherwise. He is not a nice person.). Anyway, I’m not reading many paper books any more, except for graphic novels – and that’s just because the screen is too small on my ipad mini to appreciate the art work and read the text. On the kindle app, I’ve been going for a lot of relatively fluffy reads – lighter genre fantasy and detective series. Rereading favourites. Lots of urban fantasy, but nothing too horrible and dark and gloomy. Young Adult books can be worth a look, even if you’re not feeling too mentally fragile There’s less graphic sex and violence, but perfectly fine plotting and characters. For example, I didn’t even know Megan Whalen Turner counted as YA until I’d read her entire Queen’s Thief series. I think this makes me a lot like other people this year; I am in the comfort reading set. I hear there is a large set of doom-readers out there, too but I definitely can’t handle that.

Friends. I’m like everyone else in some ways: my social circle has shrunk. Our regular visits from and to Melbourne friends were both cancelled. My cafe knitting group stopped. I wasn’t able to visit some friends in NZ, either, one because she was in Auckland and shut downs were just beginning and there was a known risk. But, unlike many people, I have not been socialising online instead. My anxiety has manifested in a big way as social media avoidance, so whoops, there go most of my contacts. I need to do something about this. Perhaps I should have a resolution of contacting people individually in 2021.


Games: Not much good news here, either. COVID stopped the board games meetup group. Social media anxiety stopped my online D&D game. I still play a lot of match 3 games, especially when my brain or my eyes refuse to focus enough for other activities. And I’ve been playing Hero Wars, which is a pay to win game of assembling teams of characters and fighting monsters and fellow players. So far it’s not pay to do reasonably well, although I have got into paying a little bit. Seems fair for the amount of time, but OMG do people ever really buy the sixty dollar plus bundles? (Yes, it seems they do. But not me, so I will not be coming first on anything ever.)


Hobbies: Lots of people have been picking up new ones. Not me. After a weird medication fuelled purchasing mania in late 2019, I have made exactly umm, zero of the non-yarn related projects that I bought materials for.


I: don’t know what to write about for I. Isolation? Itching (that med side affect faded away.) Information? (I avoid a lot more than I used to, see A for Anxiety, but i’m loosely keeping up.)


Japanese: This came and went a bit. I am persisting, but sometimes it’s only a word a day. DuoLingo comes and goes. I did not learn kanji, though I did finally acquire the Kodansha book I’ve been wanting for ages. Maybe next year.


Knitting: My main hobby, therapy, and art. It’s been a weird year for it. I started well – made a colourwork hat and the yoke for a jumper for the Bloke, went on a knitting cruise, bought yarn at interesting venues, had lesssons from Lucy Neatby. But when the anxiety took over, I lost my mojo. Couldn’t concentrate, couldn’t count, couldn’t even go onto ravelry to log my projects and yarn. Got deeply depressed when I found things that needed repairs. I never stopped knitting, but I did a lot of stuff that was extremely repetitive. Scarves and hats for Companion House refugees. I learned fisherman’s rib – in order to repair an old jumper for the Bloke one day – and made a couple of long scarves. I made some other very simple things like shallow triangle shawls and scarves.

I started recovering here around October. I did the Stephen West Mystery Knit-Along and I’m now feeling pretty positive. My current active projects are another Stephen West shawl (Winter Lights), a bulky cardigan (Freja) and a scarf for the charity box (Dudester). My plans for next year are a) learn to repair things and b) work from books – Milarrochy Heids by Kate Davies, I think. Maybe some Elizabeth Zimmerman, or a crochet book, or a sock book. I’m not sure if I’ll be up to custom lace design or shawl design but it’s on my radar.

Lock-down: OMG I am SO VERY GLAD I live in Australia. Sometimes they go wrong and sometimes they are overly harsh and sometimes overly lax. But I’m not going to quibble with my 20/20 hindsight. Someone had to make the decisions without benefit of reliable psychic prediction capabilities, and I thank our state and territory premiers for being smart and listening to the public health professionals.


ME/CFS: Well, yeah, the topic of the blog. It has made the whole iso/lockdown thing weird and confronting, as everybody is hating what I have to do all the time. To some, maybe at least they have learned that LYING ON YOUR COUCH ALL DAY IS NOT AS FUN AS YOU THOUGHT!


Netflix: We refused to watch the Tiger King. Oh hell no! It’s been a lot of comfort viewing for us this year, on Netflix and other streaming services. Plenty of Star Trek rewatches and cozy detective series. Definitely nothing grimly post-apocalyptic or overly heavy. The Umbrella Academy is probably the darkest thing we watched consistently. I was disappointed in Young Wallender because modern and grim and gritty. r


Out: is a place I don’t go very much at all. Like very many other people, except that this is not a new thing for me.


Pyjamas: OMG I have NEVER been so fashion forward!


Quarantine:
I had one. So did lots of people. Mine was a nice easy one, as I was lucky enough to get home from my cruise juuuuuust in time for home quarantine instead of hotel quarantine. The Bloke also made it home from South East Asia a little earlier: he was just in time to not even need any quarantine. But he did have a test, so needed to stay home for a few days until the results came in.


Resolutions: I am not big on making resolutions, but I do like to have a few plans. They went completely out the window. I bet everybody else’s plans went to shit, too. I’ve seen so many posts about COVID weight gain and couch sluggery. Oddly, I did lose some weight, despite not having a resolution for it. It was entirely involuntary – that anxiety thing made it happen. My 2021 plans: learn knitting repairs, learn kindergarten kanji, tidy up one small thing daily, and get somewhat back in touch with people.


Slippers: I AM SO INCREDIBLY ON TREND I CANNOT EVEN! !!!!!!!!!!


Time: What day is it? What month is it? How long is 2020 going to go on? Will it be forever? I am sure I am not alone here.


Ugg Boots: Very useful as slippers in winter, so you can pop out to the garden for a bayleaf or to check the mail without putting real shoes on. (Pop out? Of course I mean stagger exhaustedly,) Pro-tip: if you pretty much live in them, you need two pairs, so you can alternate days. The sheepskin is very good for keeping bare feet warm and odour-free, but they need a day to air out or they will get manky. This is probably old news for spoonies, but may be new to healthy people now working from home.

Valium, Valdoxan and Venlafexine. Better living through chemistry. I’m not at all alone in this, my GP tells me anxiery and Valium use and other mental health meds are way up this year. My 3-V drug cocktail makes me want to invent a 3-V booze cocktail. Hmm. Tricky. Verdelho, Valpolicella, Viognier: probably best not to mix wines. V energy drink – yuk, no. But wait – Vodka as a base. Vanilla and Violet and Vermouth all sound possible for vodka martini variants. Hmmm. Dan Murphy’s will deliver me several kinds of violet liqueur. They also have a violet gin, but that refers to the colour, not the flavour. I went for the not-so-sweet Swiss violet liqueur for some Xmas booze.

Wedding: my niece’s wedding in March was postponed, and eventually happened in October with some low-key social distancing, a smaller party than planned, a missing bridesmaid stuck in Melbourne lock-down,and no chance of a Japan honeymoon. This sort of thing has been happening to many people- all sorts of personal celebrations cancelled, rescheduled, reconstructed, wrangled online with Zoom and Skype, whatever. We are lucky to be in Australia, where it has been a minor level of inconvenience for the majority of us. Not to minimise the almost 1000 deaths in Australia, but at least the Bloke and I have had no funerals to attend or miss.

Xmas: Oops, that NSW cluster hit us too, though only lightly. The Bloke’s family visit up from Sydney was cancelled. Also, see Delivery. I think this is quite the trend. Everything that I bought specially for people came from online orders. I did pick up some random odds and ends when I was out to lunch in a cafe that also sells groceries, but mostly it’s been online. People also bought me stuff from my online wishlist, and I bought myself some things on line, since my mother sends money.


YouTube: I stopped watching early in the year as the anxiety hit and I was reminded of too many losses. But I picked up again later. I am a mad tragic fangirl for Critical Role, and although I keep intending to watch other things, I also keep wanting to know what the next bit of the story is. I’ve also been enjoying some of the COVID season theatre – the UK National Theatre, some of The Shows Must Go On – together with the Bloke and our regular Friday friends. Possibly the funniest thing I’ve seen this year was the socially distanced Dick Whittington Panto – with the socially distanced pantomime horse – front actor over here, back actor with tail over there…

ZZZ: sleep is a constant problem for people with ME/CFS. It’s also been a theme of the year, as I have found good meds and bad meds and no good very bad terrible horrible meds that gave me the screaming abdabs. However, the 3-V cocktail is a great help. I’m mostly falling asleep quite easily and sleeping quite solidly. Ahhhhh, bliss.

Unfortunately it seems to wear off too quickly, and I often wake early, in the pre-dawn hours. Sometimes I drop back off quickly, sometimes not. A little drop of booze for a nightcap can help – even though it goes against all medical advice, especially with the meds I am taking. I am not a doctor. This is not advice. It is considered dangerous. But it works for me. I don’t have substance abuse issues. I keep it small and I don’t do it every day. But I will tonight: I will open my violet liqueur, for NYE! And then go to bed at 10pm, there to lie quietly and read for an hour or so while I recover from the effort of showering. It’s life, Jim, but not as we once knew it.


Snippety Snippety Snip

That’s a creature from Yu-Gi-Oh, a game of which I know nothing, but it’s a fun name, a ridiculously silly combo-dino, and a good start to a post of ME/CFS miscellany.

Things that have made me tired and short of breath recently

Showers, every time, of course.

Going out to the back garden to pick bay leaves and rosemary for a roast.

Standing up and peeling an orange.

Also, standing up to clean my teeth, every night.

Rolling over in bed to put my book down and turn off the light.

Standing up and packing a bag with knitting and a book.

Sitting at a table and wrapping a couple of parcels.

Doing 50 crunches. I guess that’s kind of normal, though. People with ME/CFS need to avoid aerobic activity, but strength and stretch is still doable for most.

Weird Shit

When you have a Post Exertional Malaise sore throat, you can’t treat it like a normal sore throat. Forget about eucalyptus and honey lozenges, or super power Strepsils, or betadine gargles. Zilch. Panadol can take it down a few notches, though, which is nice.

Panadol also works on toothaches that are referred sinus pain from your weird headaches that aren’t really sinusitis but seem to be located there anyway. Lavender oil can also help here, if it’s not too major.

It is possible to feel both too hot and too cold at the same time, if your autonomic thermal regulation is malfunctioning. (Panadol and lavender don’t work on that one.)

Why am I only smell sensitive in the morning? Weird. I can get sound and light sensitivity problems at any time of day.

It is entirely possible to sleep a solid eight and a half hours, with good measures on your FitBit sleep quality, and no wakes in the small hours – and even so still wake up exhausted and with a subjective feeling of a terrible night’s sleep.

On the other hand, a subjectively good night’s sleep is a mixed blessing. You can feel alert and want to do things, but be too exhausted to actually do them. Feeling rubbish is also a mixed blessing for the opposite reason: it prevents you going stir-crazy.

Other Stuff

So I read this lede line about Michael J. Fox and thought OMG yes that’s so true. “Every step now is a frigging math problem, so I take it slow.” Different illness, but all chronic illnesses have some common burdens.

Some days you just get lucky. Last week I felt well enough to go to the chemist and an aisle or two of the local supermarket. Yay! Leaving the house! But wait, there’s more. The supermarket had super clearance specials on raspberries and smoked salmon. OMNOMNOM! And then I got back to the car, and realised that I had forgotten to put my disability card in the window. But even so, I had no parking ticket, and not even a glare from a passer-by.

Choices

You have choices, even with ME/CFS. They are not always easy to make.

Pick one: shower; a social lunch out; run an errand like going to a doctor’s appointment or a quick grocery or chemist shop; tidy up or do laundry or the like; have friends to visit; or cook a simple dinner. On a good day, pick two. On a superb day, maybe three but that’s asking for the post exertional malaise – next day it will most likely be pick none.

Pick one: knit and watch Critical Role in the afternoon. Enjoy the drama and humour of the story, and the feeling of being my nerdy self. Or read a book instead, and avoid the reminder of having dropped out of my online D&D group because of my social media anxiety.

Pick one: knit group today, or optometrist and blood test tomorrow. No, you really can’t leave the house two days in a row. Damnit. Fun or necessity. I chose necessity, necessarily. But I did make some fun of the necessity by having a post fasting blood test brunch at High Road cafe.

I can actually manage a quiet meal in combination with an errand, and I try to do so when possible. That’s quiet, as in by myself with a book, not a social event. COVID-19 actually makes this easier, as cafes now have wide table spacing, so the quiet is easier to find. I’ve always been a foodie, so it’s another way of affirming my continued existence as an actual human person with interests.

Anyway, this led to some more choices. I went with the excellent and prettily presented cured kingfish on rye with cream cheese, beetroot, fennel and apple. That was an easy choice, as most other breakfasts involved eggs, and I can’t tolerate eggs in the morning. (Weird sensory shit reasons.) I’d like to try more of their food; there are some very interesting options. Savoury waffles with jalapeno, silverbeet and preserved lemon ricotta; a vegan green bowl with tahini and almonds (I am a sucker for anything sesame and almond); a middle eastern style braised beef cheek; house made cakes and muffins.

The harder choice was the coffee. After I’d inhaled a basic large skinny cap (no choc because idunno that’s just how they roll), I checked out the coffee menu. It’s more like a wine list, with varietals and special blends. You can spend $25 on a cup of coffee, which seems to me to tip over into ridiculous wanker territory. But I did go with the flow and have a fancy $10 “marmalade” coffee – not flavoured but specially blended to bring out the citrussy notes of some of the beans. Served black ONLY, in a fancy chemical looking piece of glassware. It was pretty interesting, but I won’t be making a habit of that. Their regular ONA is good enough for me.

Pick Four:

To finish on a happy note, I seem to have got some of my knitting mojo back. I’ve been doing the Stephen West Mystery Knitalong (MKAL), and I had to choose a main colour and three contrast colours. I’m really happy with my choice. It’s totally on fire. It’s really hard to get a good photo, though, with all the dark rich colours. It looks best if you can tilt your screen to make the main colour look black. It’s got sparkles, too, those whitish flashes are not bits of cat hair! Not shown in full detail because a) spoilers and b) I haven’t finished anyway.

I Don’t Have to Go Anywhere This Week.

And I’m NOT going to go anywhere this week.

It’s been a full few weeks. There’s been a birthday dinner; another birthday celebration at home; a wedding with both lunchtime ceremony and reception dinner; a counsellor visit; early voting for the local ACT elections; a doctor visit; a chemist shop and a lunch out; a birthday party out at a pub; an optometrist visit; a knit group; and a small supermarket trip. As well as visitors for our regular Friday nights. Oh, and also my CPAP mask broke so I got some really crappy sleep with the not-very-good emergency backup for a few days, until I got a replacement in the mail. All that in just under 3 weeks. I am SO POOPED. I need a week off, at least. I’m gluing myself to the couch.

Fortunately the Bloke has been cooking and shopping more, so I’ve had less to do at home. He’s changed the bed and done the laundry, and otherwise kept the place clean. He is so good, and I feel like I am a total failure at being a sensible adult who can take care of herself. Well, of course actually I am a SICK adult who can only not take care of herself because of that. It’s not actually my fault. But those brainweasels gonna weasel and whatcha gonna do? (Yeah, yeah, I know, see counsellor. Sensible adult is sensible.)

It takes a mental toll as well as a physical one. I have spent a few days, as expected and planned for, with the body aches and malaise and sore throats and all that. But the brain fog effects have been rather more than I anticipated. DuoLingo? Cryptic crosswords? So not happening. It’s all mindless games and urban fantasy novels for now.

It’s a bit disappointing this time, because I’ve been feeling like my knitting mojo is coming back. I’m taking part in the Stephen West MKAL (Mystery Knit-Along). It’s a knitter thing. It’s a mystery in that you don’t know what the end product will look like. You know up front who is the designer, and that it’s a shawl, and it takes 5 skeins of yarn. But will it be a triangle or a crescent or something else? How will the colours interact?

Anyway, it’s got some tricksy stuff in it. Look at this! Cool honeycomb with slipped stitches and two colour stripes in the background.

That’s from clue 1, so I can put up a pic without spoiler warnings. I’ve just started on clue 2 which has some big holes and some slip stitching – and clue 3 has already been released, so I am a bit behind. This is because some days my brain won’t let me tackle it, and I have to do something easy those nights.

I am a bit excited, though, that there is now a Sunday afternoon knitting group, 2pm at the Dickson Tradies. It sort of flows over from the 11am morning one, so being early is OK. I went yesterday and I hope to make this a regular outing. That’s the next time I’m planning to leave the house. A full week, yes!

Bye now, need to rest.

Lessons from COVID

I’m still reading the newspapers online, and sometimes things from the COVID world resonate with the ME/CFS world. Although sometimes I think it’s the entire world, and a crack in the facade allows some truth to sneak through. Here are three things I’ve been relating to quite strongly.

One

The anxiety of uncertainty is something that probably resonates with all of us. We are on edge, these days. There is COVID. There is Climate Change. There are fires and floods and plagues and reality-denying politicians and actual literal nazis out there. I’m not sure anyone sane would want to even read the news, let alone leave the house.

I’ve certainly had a great deal of trouble with anxiety this year, manifesting largely as avoidance of online social contact, but also as extreme over-reactions to small mishaps. The game I wanted to play is off-line for now? I spilled a glass of water? END OF THE WORLD!!!@111 – cue the palpitations and ragged breathing and the sense of impending doom. I’m getting better now, but it hasn’t been fun.

Anyway, it’s quite an interesting article, well worth a look. How we cope with uncertainty is the key: are we flexible, resilient, or do we see uncertainty as a threat? For example:

Beth Meyerowitz, a professor of psychology and preventive medicine at the University of Southern California who has studied how people cope with the uncertainty that comes with a cancer diagnosis, has found that people with a strong intolerance for uncertainty were more likely to engage in avoidance coping strategies, such as preventing themselves from thinking about or experiencing the feelings they’re having, and that those methods of coping were associated with higher degrees of emotional distress.

Well, doesn’t that resonate with the problems of denial I’ve written about a couple of times? Turns out that pretending things don’t exist doesn’t make them go away. Who knew?

Two

Our Sense of Time is Broken, says another Washington Post article.

“The running joke is, you know, we used to have Monday, Tuesday, Wednesday, Thursday, and now we just have Day, Day, Day, Day, Day,” said Dean Buonomano, a professor of behavioral neuroscience at the University of California at Los Angeles, in May. “We’ve sort of lost our mental landmarks or temporal boundaries for days.”

When we’re in the midst of something tedious and rote, like quarantining, it feels like forever, Buonomano explained, because “our memory focuses on, to a large extent, novel events. If you’re not doing novel things, you’re less likely to have those temporal mental landmarks.”

This is a familiar to a lot of chronic illness folk, who spend their time without regular jobs and activities to denote the passage of time. It’s always a bit of a blur. I’m fond of the landmarks, our annual Easter visitors, our annual trip to Melbourne – both cancelled this year. I used to love the structure of the Wednesday knit group, also gone. At least we have a new routine: Friday night delivery food and movies with friends. Friday is a known day, a marker. Weeks have structure. Months and years, though, are more of a blur. It’s September already? What? How?

Three

Six months on I’m still unwell, says a young man in recovery from COVID-19. Six months, eh? Ha. Try nine years over here. I feel myself wanting to sneer at the n00b, but that’s a mean reaction and I wish I didn’t have it. He’s quite possibly up for many more years, and at least I was 50 when I got sick, so I’ve had some good life. Sorry, dude. I really do wish you well.

Anyway, the article repeats what we’ve suspected.

Research has only recently begun into the long-term effects of Covid-19, but Shepherd said the working theory was that the coronavirus had disrupted people’s immune systems, causing a cytokine storm, or an overreaction of the body’s protective system, which is thought to also be a factor in ME and chronic fatigue syndrome.

Several studies in the last two or three years show that immune system dysfunction is probably involved in ME,” he said. The immune system seems to continue to activate on a low level, trying to fight off a virus that is no longer there. That reaction may then affect the central nervous system and the hypothalamus.

If post-Covid fatigue and ME are linked, research may provide solutions to both conditions. 

And another piece in the BMJ on the author’s experience of long haul COVID-19 is full of lessons: don’t try to dominate this virus, accommodate it. Crucial advice for those of us needing to pace ourselves, whether it’s from COVID, ME/CFS or any other debilitating condition. Why did we assume COVID would be like the flu: short and easily finished with, if dangerous to some people? Many illnesses have long term fallouts, but we like to think a sickness is limited and once it’s done, it’s done. It’s an incident, not a condition. Not true. I remember with much sadness a work colleague – a delightful woman, warm, creative and a deeply intelligent mathematician – who died of complications from childhood cancer, forty years on.

And yet somehow this is not common knowledge, and those reporting their problems are still frequently disbelieved. But it should be known. Some illnesses are never quite over, even if they do not appear to be chronic or disabling. There’s post viral fatigue and post-polio syndrome and that encephalitis that kills teens ten years after they recovered from measles. You can get shingles fifty or sixty years after you had chicken pox. Even a bout of gastro can significantly increase your risk of kidney disease and many other conditions later in life. So get with the program and believe in reality!

For people with covid-19 who have experienced other people doubting the veracity of your symptoms, etch this experience in your memory for ever. If you are a man, remember women experience this more than you; if you are a doctor, remember people with ME/CFS have experienced this for decades; and if you are an employer, remember employees will be nervous about saying how they are, and will assume that you will disbelieve them.

Paul Garner

Please. Belief is so important. And medical gaslighting is nothing short of abuse.

It’s been a long time since we had snippets

One:
Here are all the occasions on which I left the house in August. There’s precisely one social event among the eight outings, but as you see I am NOT housebound. And we have friends visit regularly on Friday nights, so I’m also not a total hermit.

  • Chemist (fail. scripts not there; BP machine broken)
  • GP office to pick up scripts, another chemist
  • Nurse (BP check), bakery
  • Sleep specialist & nearby yarn shop
  • Lunch with Bloke & his Mum
  • GP, few groceries
  • Counsellor
  • Dentist, chemist, few groceries

September is looking less active so far. It’s half way gone and I’ve been out exactly once: to the chemist for scripts, and their next door Lolo and Lola for Friday night desserts. I have two other health-related appointments and a couple of social events coming up.

Two:
When you are too brain fogged to make decisions, just don’t. Keep on doing exactly the same thing you were doing. This is a good time to make long scarves, but actually I didn’t this time. I made lots of things from the same pattern. Scarves next, though.

 Three:
Something I think only a spoonie with ME/CFS could say: “My throat hurts and I’m aching all over because I cut up so many carrots and potatoes.”

Four:
Sometimes I feel like I’m living in a cage. Maybe I should make more effort to open the blinds. Still, at least I get to see the seasons change from my couch

Crocodile Hunting

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I’ve discussed the crocodiles in Denial before. This pic is an Australian salty, not a Nile specimen, but meh, so am I. Catching those buggers is very difficult.

I recently found out that there are two different species of Nile crocs. The really dangerous type is C. nilotocus, while C. suchus is smaller and much less aggressive. This reminded me of my crocodile post, and I will belabour the original joke by noting that there are two kinds of crocodiles in Denial as well.

Species 1: Crocodylus suchus

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C. suchus

The smaller ones, I have decided, don’t actually need much attention. They may lurk away, hard to spot until you trip over them, but although their bite may hurt, it does not harm. These are the surprise! sadnesses, where some reminder of your former life makes you break down in tears. It’s not fun, but it’s bearable and possibly even cathartic. There is such a thing as a “good cry”, and it’s probably even essential on that tricky path to acceptance.

Sometimes it can even be bittersweet. My life has included wonderful things.  I have sung in the Sydney Opera House in a concert labelled by reviewers as “orgasmic”. I have worked as a restaurant reviewer. I have cooked a full Xmas turkey dinner with all the trimmings and all the desserts, even home made icecream, and all of it from scratch. I have motorcycled the Himalayas in Bhutan, camped out under the stars in western Egypt and central Australia, hot air ballooned in Cappadocia, and caught the train from Lhasa to Beijing. I have seen Antarctica. And that’s to name just a few.

I have things that I can look back on with pleasure or pride, and that reminds me of who I am. I’m still that person in many ways,  even though I may not be able to do the things any more. I have interests and experiences and opinions; I am not a mere protoplasmic couch blob.

Species 2: Crocodylus niloticus

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C. niloticus

The dangerous crocs are the ones that can mess up your life even more than it’s already messed up. It turns out that there are a couple of subspecies of niloticus, but I really have beaten this theme to death so I’ll stop except to note that the Denial also has subspecies. I’ve identified several so far.

Type 1: The denial of being sick at all

I don’t really do this any more. This was a danger early on, when I had no diagnosis. And some doctors were pushing exercise as a cure for deconditioning from post-viral fatigue. And I pushed myself and I got worse. Yeah, not a good idea in hindsight.

Type 2: The denial of being sick right now

This is more dangerous to me these days. If you have a good day, it’s so tempting to use that rare energy and do as much as you possibly can! And then you wreck yourself for the next few days with post-exertional malaise. But also, this kind of denial can mess with your head.  If you’re not sick, why are you lying on the couch doing nothing? Even if you’re in a good day, and have actually done something, like maybe had a shower and cooked a simple meal, then why aren’t you doing MORE? You must be some kind of lazy stupid slob… that way lies depression and self-hatred. Beware!

im-drawing-about-anxiety-and-depression-588efbc997a9a__700(credit: https://www.boredpanda.com/anxiety-depression-illustrations-comics-sow-ay)

Type 3: The Denial of being sick tomorrow, and tomorrow and tomorrow

This is still an issue, but I am managing to handle it a bit better. The thing here is that you do still have to get stuff done, no matter how sick you are, and you can’t wait until you’re better. This one is all about working within your envelope. Schedules and lists and asking for help are the main tools. Sadly I HATE asking for help, and I’m not much good with arbitrary rules.

Still, routines are good for things that are hard to face up to. For example, I am getting better at money since deciding that the first of the month is the day to wrangle the finances. And so I can allow myself to forget it most of the time, and not feel guilty, and not feel terrible about losing my independence every damned day.

I also have this idea of certain days and certain times of day being the ones for doing some self-care things, but that’s not coming together quite so well. I think I’ve scheduled too many things for Mondays, and I keep forgetting to do some grocery orders on time.

Type 4: The Denial of the mental harm of being sick

I AM COMPLETELY FINE I TELL YOU.

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Spoiler: I am not fine.

This whole thing sucks. Not only am I sick, but this stuff is COMPLICATED to manage. It sucks brainspace away. Sometimes not doing things is totally warranted; sometimes I have to do the things. But which is it? I’m too tired to think it through. I don’t know. I’m confused and I’m sure I’m somehow doing it wrong. I am a nerdy logic and maths type person and if I can’t reason my way through things, I am lost.

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So there’s the procrastination, the missing motivation, the donwannas, the sulks, the won’t shan’t can’t make me moods, the avoidance tactics like endless games and books, the hunkering down and hermiting. It might be nice to talk to friends, but that’s way too hard. It’s easier to avoid human interaction – which is also not good for me.

Some of these are not directly to do with being sick, but they are still indirectly so. I had a difficult childhood in some ways. It may seem stupid to harp on that when you’re pushing sixty, but like many people I never really came to terms with it. I might never have, had I remained well: I kept myself busy and spent almost no time thinking about my self. But no activities any more? Oops. Maybe if I had not been sick, I would still be filling my days to the brim with work, travel, music, dance, cooking, weight lifting, cycling, yoga, and everything else. But now there is much less to keep those demons from crawling up out of the well.  MATCH-3 GAMES 4EVA… possibly not the best idea, but as my counsellor says, sometimes you need the Minimal Energy Dopamine Supplement. (That’s MEDS, LOL.)

This stuff? Not doing so well there, though I have made a little bit of progress. Things that help me here are the aforementioned routines, lists, and asking for help. But also counselling and medication. I’m currently propping myself up with a cocktail of no less than four mental health related medications, more if you include the relaxation herbs and teas and the occasional alcoholic nightcap. This post brought to you by the letter V, for Valdoxan, Valium, Vitamins, Valerian, Verbena and laVender.  Also V for Valour because, shit, this stuff is not easy to post about, even if I do only have like five (V) readers. (Thank you.)

More Spoonless Baking

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I felt quite inspired by the success of my sweet potato and walnut loaf the other week, so I thought I might try some more microwave baking. This time it’s a fruit loaf, kind of. I was inspired by two things: a Welsh bara brith (“speckled bread”) and the fact that I had fruit juice in the fridge to use up. Traditionally the fruit should be soaked in tea, but hey, why not fruit juice? This will make it sweeter, so I’ll leave out the sugar.

I had juice that I did not want to drink courtesy of the delightful Siam Twist in Hackett. It’s a cafe by day with western style food on offer as well as the excellent Thai. This is a favourite for our regular Friday nights with friends, delivery food, and Netflix or YouTube movies or theatre. The food is awesome, and they often throw in a freebie dessert or drink for us. You can order delivery from their website; they are not on menulog or ubereats or whatever. It’s a bit clunky but do persevere! Some dishes are listed as specialities rather than curries; just browse around. My faves are the Massaman beef and the Nam Tok salmon, but it is all good.

Recipe: A Peculiar Bara Brith

  • 450g mixed fruit (mostly currants)
  • 400ml apple & guava juice
  • 2 tbsp blood orange marmalade
  • 300g self-raising flour (half white, half wholemeal)
  • 1 large egg

Soak the fruit in the juice overnight, with the marmalade.  Next morning, beat the egg in a cup, then stir it through. Fold through the flour.

Pour into a microwave safe loaf pan. Bake off-centre at half power for 30 minutes or until done.

Serve plain or toasted, with butter.

The Verdict:  Not bad, though I think I should have kept the sugar, and I’d prefer tea to juice. The juice and cranberries are both quite acid, so it’s quite sharp. Also the marmalade citrus flavour didn’t come through as much as I’d hoped. Still, it’s quite edible.

The Commentary: To be a traditional bara brith, you want black tea to soak the fruit, and a couple of tablespoons of brown sugar. You’d also use white flour, but I had some wholemeal in the pantry to use up. Ancient recipes are yeast based, but the soda raised version is perfectly cromulent.

A teaspoon of allspice, or mixed spice, is also traditional but I was not quite sure how it would go with the guava. So I added the marmalade instead. I used a thin cut blood orange marmalade, but you could use a thick cut, any flavour, and chop the peel chunks if you must. Too much hassle for me, though, as was the orange zest I was envisioning.

My mixed fruit was 300g currants, 90g mixed blueberry, cranberry and raisins from three little individual school-kid packs, and 60g raisins. Blueberries and cranberries are also not traditional, but there is a Welsh blueberry-like fruit called whimberries (also wimberry, winberry, bilberry) so who’s to say they never used them here? But cranberries would be right out.

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Microwaving is also not traditional, and you would normally bake this bread at a moderate temperature (180C) for about an hour. But the popty-ping (sorry, actually ffwrn meicrodon) is where I’m experimenting. In this case, you MUST be careful to use a low power setting. Dried fruit, with its high sugar content, can scorch and burn, as anyone who’s ever microwaved a slice of Xmas pud on high will tell you.

This one also can’t sit in the microwave quite as long as the moister sweet potato bread. The bottom will get soggy from the steam. Best to take it out and put it on a rack ASAP but yeah, standing up to order is not my forte. So I have a soggy bottom (snerk), and it’s better toasted than plain.

I’m still pretty happy about my expanded microwave cooking repertoire. I do so miss being a capable cook. Next time: apple cake! (No, I am not going to peel and grate the apple. I have An Idea.)

I Baked a Thing

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My small handful of readers know that I used to be a very keen foodie and cook in Ye Olde Days BC. (That’s “Before Chronic”). I used to keep a food blog. I even had a stint as restaurant reviewer for the Canberra Times. That, by the way, is somewhat less fun than you might imagine: you have to pay so much attention to detail, and the lawyers will cut anything they think is too negative. But anyway, I’m still very glad to have had the experience. It was a lot of fun for a couple of years. Losing that part of life has been one of my many ME/CFS sadnesses.

So I’m pretty excited that I actually managed to make a loaf cake. It’s sweet potato and walnut, and it’s a very tasty breakfast or tea bread. Serve slices with a bit of butter.

I made up my own recipe based on internet searches for microwave banana, pumpkin and sweet potato breads. This isn’t a hard thing for someone with plenty of baking experience: baking is a lot more forgiving than most people imagine. Much more so than bread making; yeast is such a fickle beast. And the microwave is definitely the way to go for us spoonies.

Here’s the recipe:

Sweet Potato and Walnut Loaf

Ingredients:
1 cup mashed sweet potato
2 eggs
1 tsp vanilla extract
1/2 cup sunflower oil
3/4 cup milk
3/4 cup walnuts
1 tsp cinnamon
1/4 tsp ground cardamom
1/4 tsp ground nutmeg
3/4 cup dark brown sugar
1 1/2 cup self raising flour
Method:
Combine mashed sweet potato with eggs, vanilla, spices, oil and milk. Mix well, then add walnuts. Fold through the flour.
Add a dash or two of milk if it seems a bit too solid, you want a batter that is not solid like scone dough, but a very thick liquid that can be poured.
Pour into silicone loaf pan. Microwave on half power for 20 minutes or until done.

 

And in practice…

Here’s what I actually did. You most certainly don’t have to follow my steps exactly. Actually, quite obviously you shouldn’t. But this gives you an idea of how a spoonie can cook.

  • Wash and cut up two (unpeeled) sweet potatoes into approx 5cm thick slices and lay out on a baking dish.
  • Completely forget that you were going to bake them in the oven at the same time as the roast pork, and leave them on the kitchen bench overnight. Oh well, so much for a couple of pieces to go with the roast. Never mind.
  • Decide to nuke them instead. Set for 10 minutes on high, run it, forget about it again.
  • Discover half cooked sweet potato in microwave several hours later. Give them another ten minutes on high.
  • Forget about it some more, then next morning remove the skins (they slip off easily when they are properly cooked and it’s easier when they’re cold.)
  • Collect a cup worth. There’s a neat trick to do this: fill a 2 cup jug with water to 1 cup, then plonk in your sweet potato until it comes up to 2 cups. (Crying “Eureka!” optional. Props to Archimedes.)
  • Drain off the water and pop the sweet potato in a large mixing bowl. Never mind that it’s a bit damp. Add 2 eggs. Realise they are tiny, so add another. Attack with potato masher. Get tired and cover the bowl with a tea towel and go for a rest.
  • A couple of hours later add the vanilla and spices,  totally forgetting that you had intended to add nutmeg. Mash some more, add the oil and stir about. Maybe take another short rest. I think I did, I can’t remember.
  • Add the flour and fold in. Realise it’s too thick and add the milk. Give it a taste and suddenly realise you forgot the sugar. Add the sugar! Phew!
  • Now pour it into your microwave-safe loaf pan. Line with baking paper if you like (necessary with glass, not so much with silicone)
  • Nuke on half power for ten minutes. Forget about it for a few hours while you’re resting some more.
  • Return and check it – the classic knife to the centre will come out dry when it’s done, but at only ten minutes it isn’t. Nuke for another ten minutes (half power).
  • Next time you remember that it exists, check it again. It may need a few more minutes to finish off. Microwaves vary in power.
  • Cut a slice and butter it and nom it up.

So there, it only took me a few days. This technique works fine because it’s a moist loaf, not a delicate sponge or a souffle, or anything else that needs a lot of precision. Banana bread would be a good option if you like that, but personally I hate it. Pumpkin would work just as well, and you could switch around spices and oils and nuts and varieties of sugars and milks, to suit your taste or dietary needs.

I also fancy trying it with apple puree, and with purple sweet potato sometime. I’m fond of my local Lolo & Lola‘s ube desserts. I mean, look at this icecream. What a colour! It makes an astonishing thickshake, which they also sell. And they do cakes and eclairs and breads and drinks as well as amazing Filipino savoury food.
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The microwave is especially great because it stops cooking when your time setting is done. You can just leave it sitting there until you can summon the energy to stand up. By the way, several microwave baking recipes suggest the ten minutes, then turn it, then do another ten minutes, but I’m not convinced. Don’t all microwaves have turntables now? I would say set it to the side of the turntable, so it’s asymmetric. Otherwise the centre won’t cook as quickly as the edges.

I’m fairly new to microwave cooking, apart from the perennial reheating of leftovers and quick steaming of veggies, so maybe there will be more experiments. I wonder about adapting some Asian steamed cakes that are commonly made in rice cookers or other steamers, since a microwave is basically very close to a steamer in effect. How about Japanese cheesecake or mushipan cupcakes? Poh’s steamed sponge? I do have some pandan essence hanging about, so that could be a goer. Watch this space, but don’t hold your breath, I need a rest first.