It’s been a while since I wrote, and I really don’t have much to say. This has been my most recent earworm: and so this is christmas, and what have you done? Another year over, a new one just begun,
And so that was Christmas. There were presents, of a most satisfactory nature, and far too much food and a bit too much drink as is customary. We had a very quiet one, just with the Bloke’s Mum for a guest.The Bloke cooked half a ham. I cooked a Turducken, bizarrely enough. Jordo’s had them all ready boned and stuffed and tolled, so I could just bung it in the oven. I added an orange and whisky glaze. It was OK, though I forgot to account for our oven running hot, and the outer layer of turkey came out dry. Meh. It was still edible. I also made potato and bean salads. And on the next few days I rested. I had some mild malaise but nothing spectacular.
Another year over, and what have I done? At first thought, not very bloody much, but I suppose there has been a lot of knitting, and I have learned some kanji. Most of kindergarten, though not all (horse and bird and thread keep being troublesome), but also a smattering of more advanced. We did have Easter guests, which was a delight, but our springtime Melbourne trip was ruled out by more lockdowns. I turned 60, which still seems weird, and had a brilliant if small birthday celebration. My metal health continues to be a tad precarious, though better than 2020. I have been a bit more social, via Zoom knitting and a Zoom ME/CFS support group, but am still very shy of social media,
A new one just begun. And what will I do? During my holiday of not doing or planning anything Xmas-NYE, I mulled this over a bit. There are many things I want to do, some of which may even be within my capacity.
Getting my knitting in order is a very big one, as my project log has been affected by my avoidance of ravelry (social media!). I have some photos and yarn weighing and sorting and tidying to do. I intend to finish a project that caught mt attention part way through last year, of knitting every hat pattern in Kate Davies’ Milarrochy Heids book, plus a couple of other Kate Davies patterns. I’ll add the Alice Starmore Mary Tudor set to that, too. And then I will move on to another book, which I intend to be socks. Also, a jumper for the Bloke, two shawls with birthday yarn, and almost certainly the Stephen West October MKAL and Hiberknitalong. And in between, when I can’t think enough for charts, there are simple brainless hats, scarves, bandanas and so on for the charity bag.
So I got started on that on New Year’s Day: writing some ravelry notes, printing some patterns, taking some photos – and by the time I’d done that I was out of breath and had to have a rest. Instead of playing a game I started writing this, so good one, me! Here are some of the photos, from the Mystery Knitalong. I went with a wild colour palette. Not my style, but fun to make and I do know someone who loves it.
So anyway, exhaustion and writing can go together as long as it’s physical, not mental, exhaustion. I do suffer from both but not always simultaneously. I have some alert hours most days, as long as I’ve slept well. This brings me to my personal goal for the year, which is to work out how to use these better.
I’ve been trying to avoid saying that I “should not waste them on games”, which is my natural go to. My counsellor is trying to get me to stop that kind of self-bullying with “shoulds”. It’s better to say and think about what I want, than to beat myself up for my shortcomings. That way if I don’t get it done it’s OK, I didn’t get what I wanted, but no biggie. The other way lies guilt and self-hate, and let’s just not go there.
So what I want to do in the coming year is to work out how to live my life better. This includes dealing with the sickening horror of the fact that just standing up to move a few things around and take a few photos is a very arduous task. The sweet denial of fluffy books and games on the couch is soothing, but also numbing and addictive.
I can’t give them up – it’s not the kind of addiction you can cold turkey on. They have a legitimate place in my life; they are my MEDS – my Minimum Energy Dopamine Supplement. For a lot of the day, I can’t do anything else that I can think of. Which has led me to a thought, no more than a faint inkling of an idea at this point, that maybe I could write a book. I don’t know if you’ve ever noticed this, but mental health self-help books tend to assume that you are not disabled. Go for a walk! Get a shower! Find a new interest and go out and meet people! Umm, no, sorry, that is not happening. So what can we do? There’s a gap in the market for a book like that. Maaaaaybe I could go there? I’ve never written a book, but I like to think that I can write. Something to ponder.
So anyway, my main aim is to get a better day plan, so I can use my alert hours to do stuff I want to do, like learn Japanese, read challenging books, do complex knitting, write stuff, do maths puzzles and cryptic crosswords. Getting things better organised is part of this: sometimes I have the mental energy to think what to do; sometimes the physical energy to do a small part of it. Separating that out could work – I already do it with cooking. Plan and prep when alert, minimal effort doing the thing when I’m foggy. Keeping myself clean is another related problem. Showers are difficult and too much effort to do daily, and my former work-around of showering at night seems not to be working so well any more. The neural overstimulation messes with my sleep. So maybe that can also be done when brain-foggy?
If I had the answers already, it would not be a goal for the year. But it’s something to work on. Maybe today I can get my language learning resources positioned closer to hand. Tiny steps.
You can never have too much yarn or chocolate. Like books, it’s never a question of too many or too much, just not enough storage space. Ebooks have helped with part of that, but yarn is really on the edge and I need to reduce. So of course I got more. Oh well. Chocolate is consumable – I always have a stash, but I get through it slowly. I’m one of those people who can eat a small amount, and not pig out. (My weakness is sweet nuts and seeds. Dark choc coated or caramelised nuts and I have no restraint. Or sesame snaps or halva.) I’m well set now until Xmas.
So this is kind of a birthday followup post. Because it’s a big birthday, there’s also bureaucracy. I had to get an eye test for my driver’s licence – tricky, since the Access Canberra offices were closed for lockdown, and you can’t get them done by telehealth. I’ve also got myself a Senior’s card. The Bloke is thrilled with his, since he gets free off-peak tram rides, but I’m not sure how much use mine will be.
Medically, the rules mean I get to do lots of assorted blood tests and a mammogram, but the doc has said it’s fine to wait until after lockdown to get that done. A couple of weeks yet for the blood tests, and I’m booked for mid-November for the mammogram. Surprisingly, they asked which arm I had my vaccination in. It seems the lymph node can look a bit over-excited on that side, even a couple of months later.
One really weird thing about this becoming a senior business is that I have realised I have no idea what growing old feels like. My last memories of being healthy (ish) are from my late forties. If I were miraculously to become well overnight, I would wake up as a deconditioned, very overweight sexagenarian. What is that like? I don’t know. At least I could do something about the deconditioning – it would be so marvellous to go for walks again – but what would a baseline average fitness be like for me? Not what it was as I last remember, I’m sure.
But enough about being old and sick. The fun part is yarn, chocolate and games. Chocolate is non-seasonal, but this October is a big one for yarn and games.
Haigh’s, Federation and Enigma. All awesome, and it’s hard to compare. It’s a matter of personal taste. Me, I like dark chocolate and extra-strong flavours. Not milk chocolate, that’s just wussy stuff with not enough chocolate. Why bother? I do like white chocolate, though, because it’s not chocolate at all (cocoa butter but no cocoa solids), and therefore can go well with some fruits that chocolate doesn’t match.
Haigh’s is a fairly big brand with multiple shops in Adelaide (where it all started), Melbourne, Sydney and Canberra. Federation is a small Tasmanian business, with a bijou factory near Port Arthur and a Hobart outlet. Enigma is a single shop in Braddon. All of them ship Australia-wide. I got a box and some bars from each.
If I had to pick, I’d say the bars from Federation are best – rich dark chocolate and strong flavours. Haigh’s are also excelllent here. The boxed chocolates from Enigma are best: fillings strongest in flavour, even though the chocolate was milder than the Federation. And you can choose your box contents. The passionfruit is amazing, which makes it odd that their passionfruit bar was so weakly flavoured. Haigh’s is the old standard, and until I discovered Enigma, I would have said their boxed chocolates were the best in Australia. I love their creams – lime, violet, rose, tangerine. And their marzipan bars, which Enigma does not do.
The annual Stephen West mystery knit-along is released, and I have been doing that for some years. You get a section of the pattern every week for the month, and apart from knowing it’s a big shawl and needs so much yarn is no many different colours, you know nothing. Shape, texture, stitch patterns, all a mystery. This is a very weird one. It has a row of i-cord loops. It has bobbles coming up. I don’t usually do bobbles. Umm. Well, it’s all about process not product so whatever. (Bobbles??? Maybe I could swap in beads.)
Also, a very good friend gave me a gift voucher for Skein Sisters, and I decided I needed to spend it on one specific special project, rather than an assortment of odds and ends. I have been very attracted by Lucy Hague’s Newgrange, and the canonical yarn for that is a rather special and expensive yak/wool/linen blend. So I bought that, and because I’m thinking of altering it from a triangle to something else, some more yarn to make a contrasting colour in the plain sections. I’ll use a light watery blue, although a licheny green would also have been good.
In game terms, this month features the start of a new Critical Role campaign. I am excited! I am a big fan, a “Critter” as they say. This is a D&D game that I watch on YouTube, or in other terms, a fantasy improv story guided by D&D rules, as told by a troupe of professional voice actors. I have tried other D&D podcasts, and not cared very much for them. It’s the character acting skill that makes the big difference, along with DM Matthew Mercer’s almost Tolkein-level world-building. (Without the poetry, and with some malapropisms that I forgive, because improv.)
Also, I decided to spend a chunk of money on my favourite game that I actually play, Fallen London. This is a really good one for chronic people, since it’s interactive fiction. No twitchy hand-eye coordination required. It’s kind of like a massive choose your own adventure book in your browser – except with ability checks for success, and repeatable options to build up skills, and more choice of goals. And it’s highly literate and amazingly deep. They say it’s about three War and Peaces in total text content. (Wars and Peaces?).
It’s Victorian Gothic in style: London has been stolen by bats and is now underground in a huge cavern, atop the remains of older stolen cities. Cats and rats speak, and there are tentacled rubbery people roaming the streets.You can hunt monsters, compose symphonies, become a medium, engage in jewel heists, zail the wide black unterzee, duel with dead people, build a railroad to Hell, attend society balls, excavate the older cities, become an oneiropomp. There’s also humour. You might go to a party and wake up naked and honey-smeared in a coal bin clutching someone else’s shoe. I just speared a Storm Bird, which you can only find on the other side of the mirror, and it told me “Your knowledge of Monstrous Anatomy has increased. Or your Anatomy has become more Monstrous. One of those.”
I don’t usually spend very much money on games, and especially not on those that annoy me with nagware and money-grubbing – but this one is worth it. Programmers and creative writers all have to eat, you know, so I don’t expect everything for free. Fallen London doesn’t nag, and you can play it very well for free. The premium content is always optional. I have a lot of opinions about games – perhaps another post.
A birthday in lockdown. Despite my normal life looking a lot like lockdown, the COVID lockdown does actually make a difference. The regular delivery services are overloaded and unreliable, but some really amazing places are now delivering. Also, I have usually made an effort to go out for dinner on my birthday. Fine dining is normally quieter than pub grub, so I tolerate that better. Plus I mostly feel more well in the evenings than mornings or afternoons. I’m hoping to go out for some meals after lockdown, so this is birthday part 1. Who knows when part 2 will be? The Bloke predicts November.
For me, it’s been “Birthday Season” for decades, as the Bloke’s birthday is a couple of days before mine and it’s also the anniversary of when we met: my 18th birthday, his 19th. A mutual friend asked me to a party, which in those days meant squeezing as many people as possible into a college room, playing music – cassette tapes or a guitar singalong – and drinking really cheap and quite horrible stuff like blackberry nip or flagon port, because we had no money. Sometimes we made fake Bailey’s with cheap rotgut whiskey, cream, instant coffee, and sweetened condensed milk. As I recall it, the Bloke was sitting under the desk. I may be wrong, as he often did that. Different events may have blurred together.
I started preparing in advance with researching good food delivery. And I placed some orders for presents to be delivered, for both of us (I got him some brew kit that he wanted, plus a few Mexican cooking goodies and Federation chocolate). My mother usually gives me money, so it’s nice to convert that into some Stuff. Yes, you guessed it, yarn and chocolate! See above. But also some French marrons glacés and griottines, and a decent bottle of Tassie sparkling (Arras Brut Elite).
I’m not a big wine drinker, but I did feel that something was required. I asked the good people at Ainslie Cellars for advice, and got a $50ish bottle. We’re basically beer and whisky drinkers, so I don’t have the specifically educated palate to care for even finer wines. I recommend Ainslie Cellars very highly. They sell a really good range of spirits and beers and I presume wine, many of them local or unusual imports, and the staff are all friendly and happy to advise. They’re a little indie business, not quite as cheap as the big box places, but the service and range make it well worth a couple of dollars extra.
The lead up was the Bloke’s birthday. We had one guest for lunch – his mother, as she lives alone and we are her designated household. And we had pizza for dinner, from Solita. This was our first order from them, but it won’t be the last! The pizza was the best I have ever eaten outside Italy, made in a proper Neapolitan blast oven. Chewy, lightly charred crust, perfecto! The warm olives were a very generous serve, the salad super fresh, and the cannoli superb.
Next day is the in-between day where I get to rag the Bloke for being SO OLD. This is compulsory. Especially good this time, since he’s in his sixties while I’m only in my 50s. Ha! Food is basically light, recovery, leftovers, and getting ready to tackle the big day.
And for my birthday… a big surprise! Lockdown rules lifted so a couple of local NSW postcodes are allowed to visit, and we’re allowed two visitors! Our Jerrabomberra friends can now visit after all. I was so pleased. Company at last, and our regular Friday movie nights can now resume.
The day started a little early and headachey. Slightly underslept, in part due to a massive storm last night, with great crashes of thunder around 11:30pm. Pity I couldn’t sleep in, but sadly illness does not take a holiday. I did a few basic stretches but was too tired for weights.
When the Bloke woke up there were presents! A truly massive amount of Haigh’s chocolate from him, and also a very cool Catzilla T-shirt sent by Melbourne friends. This seemed a good time to also spend my planned money on game currency for Fallen London. I don’t usually spend money on games, but this is a very special one. It’s hard to explain just how awesome this is – a text adventure in an underground gothic Victorian setting, with talking cats, rats, spiders and who knows what else? The language alone is exceptional. Go play it and see. It’s free. Spending money gets you some premium content, but it’s not pay to win.
So, the day started as with lounging on the couch, sipping coffee and hoping my headache goes away. Playing some games, as usual. Keeping quiet and resting in anticipation of the evening. The Bloke went for a bike ride before the predicted storms. I got phone calls from my Mum & my Melbourne friends.
It was a wonderful evening. The Arras sparkling was lovely, the food utterly delicious, and matched well with the red wine that M brought from his favourite winery. H gave me a gift certificate for a yarn shop and am tying to decide how to spend it. I want a specific project, not an assortment, but which? I am very drawn to Newgrange, by Lucy Hague, though I do not normally make triangle shawls. Perhaps I could reshape it to a rectangle or a parallelogram.
For dinner, I ordered from Inka, a Peruvian-Japanese fusion place: not as mad as it sounds when you realise that a lot of Japanese people settled in Peru in the early 20th century. And what’s not to love about miso-jalapeno glazed beef? Seriously excellent sushi, sashimi and empanadas, too, and some exceptionally good vegetables (OMG those crispy roast brussels sprouts!). And I got gelato from the new Spilt Milk Bar in Dickson. With six very fine flavours, the griottines, some wafer roll bicuits, and cream, we could make our own sundaes. Mine was chocolate, sesame and pistachio, but I did taste the rest (the lemon-blueberry sorbet was amazing, honeycomb good, fudge brownie a bit meh but only in comparison to how great the rest was.)
We ate wonderful food, and drank wonderful wine, watched a wonderful production of Hamlet, and engaged in wonderful conversation. I loved it all. We were merry and silly and intellectual and discursive, and I felt almost normal for a few hours.
I knew there would be payback, of course. I ate too much (3 courses of restaurant style food); I drank too much (5 drinks over 5 hours); I engaged in too much mental effort (Hamlet and conversation); I stayed up too late (11pm). The Bloke and friends did nearly all the fetching and carrying of plates and glasses and cleanup, so I didn’t move around too much, at least.
The payback started more quickly than I expected, though. I had thought I might sleep like the dead, with the booze on top of my meds, but I could not sleep. My heart was racing. I ended up reading Sherlock Holmes stories from 2am to 4am, when I finally felt calm and tired enough to drop off for five hours.
The next day was a complete write-off. Exhausted beyond belief, sore and sick and immobile, unthinking and aphasic, wincing at every sound. I was unable to eat, or even drink coffee and take panadol for a few hours. I could do nothing but mindless games. I did get to open my delayed present from my sister. It was a fun collection of buttons and stitch markers and a tissue box (that I wanted to contain yarn for colourwork) plus a nice pen and whisky glass. I managed to post a pic on FB to show her it had arrived, but I had no ability to form words. By evening I was just recovered enough to eat a light dinner and watch Midsomer Murders (good brainfog TV, that), and even say goodnight to the Bloke in actual English sentences.
Today, as I write, although I have slept adequately, I do expect malaise. And indeed my glands are up and painful and I’m aching, and no way was I going to exercise this morning. But I CAN use words now. I plan to check facebork for the messages I saw notified on my phone, and basically rest up a lot more. I hope, since there was not very much movement and the excess effort was mental and digestive, that the malaise will be mild. So far, so good. Anyway, even if it isn’t mild: 100% WORTH IT!
Most of this is sorted. I have a wish list at Amazon that a few people know about, where some nice chocolate and yarn brands can be found. Also graphic novels and a few other odds and ends. But to make assurance double sure, I have already bought myself some good chocolate and yarn. (Note to friends & fam: yes you can still buy me more, LOL!) The booze, well, I will probably just drink what I already have. I go through my fine whisky extremely slowly.
So, I got some choc truffles from Enigma, a relative newbie on the scene in Braddon. I can’t review them yet, I’m saving them for my birthday, but the service was outstanding. Personal delivery! Yarn is Singaporean Parkour Kitties: a wool/silk blend for the KAL and a couple of other kinds for fun. I’m planning to order a carrot cake from the Knox, when I can work out what day my afternoon crafty visitors will be allowed over.
The meals will depend on lockdown status. Even when ACT lockdown is over (which won’t be until two weeks after my birthday), when will our NSW friends be able to make it? When will the restaurants be open? I’m hoping for Les Bistronomes, Ottoman, Raku and some other more low key places.The idea is a sort of Tour de Restaurants, if you will. Catch up with old friends, some of whom I have not seen for a couple of years, in small groups so it’s not too stressful on me.
David Tennant will not be attending, sadly. Though honestly, he’s far too young and bouncy for me anyway. But my current best option for a lockdown birthday looks like a quiet night at home with the Bloke, with high class food delivery, and Tennant’s Hamlet on DVD. The Canberra Times has a piece on which fancier restaurants have delivery or takeaway in lockdown. There’s some really good options: Otis cook at home, Chairman group, Rizla, Italian & Sons and more.
So given all this uncertainty, I’ve decided that my birthday can last for a good month or two, with maybe even more to come when we finally see our Melbourne friends again. If the Queen can have multiple birthdays, then so can I!
This is quite a confronting birthday for me. It’s not the COVID. It’s not just that I’m going to be sixty, which makes me officially Old. It’s that I have now been sick for ten years. Even without COVID, I can’t even think about having a big party like I did for other big birthdays. I catered my own 21st and 30th, and hired a band for a big party with a friend for my 40th. Despite being rather ill, I still had a decent 50th at home with many choir friends – most of whom I no longer see. My social circle has shrunk a lot. Anyway, even if I could get people back for a big party, big gatherings are a lot of strain. Too much sound and stimulation, I would not be able to cope for long.
Where did my fifties go? I had intended to work for ten years more before considering retirement, enjoying my professional nerdery in public heath statistical programming. I loved my job. I was very active – taking up weight lifting, walking, doing yoga, cycling, taking dance classes. I was reviewing restaurants for the Canberra Times, though also getting rather over it. I was doing classical singing lessons and some occasional choral singing. I liked adventure travel – I’d just got back from motorcycling around Turkey, and was wondering if I could get fit enough for more energetic walking or cycling trips. (I could go forever on the flat but hills were hard.)
Instead, there was a decade of loss, as I went into a slow decline after my triggering illness in 2011, where I could work part time for a while, and travel somewhat, and resume exercise. This was, in hindsight, quite a mistake – but how was I to know? I had no diagnosis until late 2014, and even now, the Australian medical advice is hopelessly behind the times and recommends graded exercise (protip for newbs: DON’T! Unless you can find an exercise physiologist with ME/CFS expertise). I was hoping to get better from this weird post-viral fatigue thing. Instead I got worse and worse, and eventually was forced to quit my job, along with all my activities.
It wasn’t a 100% dead loss of a decade. I learned a lot. Knitting, of course, and I’ve been studying Japanese. I went to Japan early on, taking it easy while my friends did more active things. Later, I went on a knitting cruise to South America and the Antarctic, a trip to New Zealand and another knitting cruise to Tasmania and New Zealand. Also there’s been some self-discovery (oh look, there I am!), some new friends, and willy nilly, a lot about ME/CFS. I knit for therapy, creativity, and donation to refugees. I am on a reference group consultation committee for the local ME/CFS group. So, you know, I’m still alive and kicking, if somewhat feebly.
I’m even considering buying a new vehicle. This is what I got myself for my 50th. Sadly, mostly wasted money.
And for my sixtieth, maybe this. I’m not even sure if I’d use it enough to be worth it, so I’ll consider further after lockdown. Though I have rented them a couple of times when I was in Melbourne, and I found it pretty useful for enlarging my options. I had to use the trains there, you couldn’t get them on trams. But I think you can get them onto Canberra light rail, which would be awesome.
Even so, a sad exchange. How are the mighty fallen.
What keeps me going? Is it hope? What even IS hope? What can I hope for? Dickenson imagined hope as a ceaselessly singing bird. Keats also envisaged wings, in his early piece To Hope, though perhaps it is an angel:
When by my solitary hearth I sit, When no fair dreams before my ‘mind’s eye’ flit, And the bare heath of life presents no bloom; Sweet Hope, ethereal balm upon me shed, And wave thy silver pinions o’er my head …
If Hope is a bird, then to ME/CFS patients like me today, it’s not a pretty one. The COVID corvid, bringing death and misery to many, but trailing a little sparkle of hope for us as it goes. The black eater of the dead flashes iridescent feathers. Long COVID research might help us, we the medically abandoned and gaslighted. Long COVID research might find us a cure, we, the underfunded, unnoticed and often suicidally despairing. Maybe others’ suffering will bring us a glimpse of light ahead. We thank you for your service. May the Morrigan treat you kindly.
I do not actually hope for a cure. It seems unlikely, given the long lead time in medical research, and my age. I am, strangely, missing out on the experience of ageing. I do not know what changes in me may be attributed to illness and what to age. I do hope that I do not lose more abilities.That I may regain the function that I lost over winter, and then some more. That I will continue to find my chosen activities possible and sustaining. That my current sleep medication continues to work. That I may find some other treatment that helps in some way. That my mental health improves. That I do not fall into despair.
So what is hope?
“A hopes that p” is true iff “A wishes that p, and A thinks that p has some degree of probability, however small” is true.
Well, alrighty then. That’s a definition and we can go on to argue whether it’s a rational position or a “passion” – which seems to be philosophy-speak for emotion. Does it have a moral value? Can it be taken to excess? Is religious hope different from regular human hope? It had better be, since I am 1000% non-religious. I find the Dickenson poem a little diminished for its talk of souls, though I do accept it as a metaphor. For the record, I also do not believe in the Morrigan. Metaphor and myth.
I found the philosophy profoundly unenlightening. I mean, good on you if that’s your jam. I read through that Stanford review essay. I can appreciate an analytic intellectual exercise as much as the next person. Probably more, since I am a nerdy nerd who usually likes that kind of stuff – but what I want now is not theory but praxis.
Perhaps hope is nothing rational. Perhaps it is a pure emotion, that deep instinct that attaches us to life. We cannot lose it: “despair and die”. More than two thousand years ago, Cicero’s wrote a letter mentioning “dum anima est, spes esse dicitur”: it is said that while there is life, there is hope. This most ancient saying is sometimes shorted to the motto “Dum spiro, spero” – while I breathe, I hope. And we don’t define what it is. Dickenson’s wordless song and Keats’ silent silver pinions speak more loudly.
Poetry seems to make sense. Sometimes I wake with a fragment in my mind. Light, light, do not go — Word over all, beautiful as the sky — Send not to know for whom the bell tolls — I can’t go on, I’ll go on … Recently, strangely, I even composed a poem in my sleep and remembered most of it. I have never been a poet. I have not even so much as imagined writing a poem since high school English class. I won’t inflict it on you, but I did like one line: “hiding book-huddled in high places”.
Less surprisingly, I have often thought of Lovelace: “Stone walls do not a prison make/ nor iron bars a cage./ Minds innocent and quiet take/ them for a hermitage.” An introverted reader may barely notice confinement. While I live, I read, I learn, I make beautiful things. I attempt peace of mind. I attempt the difficulties of love, kindness and human connection. And sometimes, though perhaps not often enough, I read poetry. There are many old favourites and forgotten works at Project Gutenberg, and there is a lot of more modern work to be found at Poetry Foundation. I recommend Ghost Choir,
Not the all-but- muscular ache, the inner sweep of woundedness; no. Not tonight. Say the part again about the bluer flower, black at the edges. I’ve always loved that part. Skull of an ox, from which a smattering of stars keeps rising. How they decided never to use surrender as a word again.
were lifted over the valley, its steepling dustdevils the redwinged blackbirds convened vibrant arc their swift, their dive against the filmy, the finite air
the profession of absence, of being absented, a lifting skyward then gone the moment of flight: another resignation from the sweep of earth
jackrabbit, swallowtail, harlequin duck: believe in this refuge vivid tips of oleander white and red perimeters where no perimeter should be
here is another in my long list of asides: why have I never had a clock that actually gained time? that apparatus, which measures out the minutes, is our own image forever losing
and so the delicate, unfixed condition of love, the treacherous body the unsettling state of creation and how we have damaged— isn’t one a suitable lens through which to see another: filter the body, filter the mind, filter the resilient land
and by resilient I mean which holds which tolerates the inconstant lover, the pitiful treatment the experiment, the untried & untrue, the last stab at wellness
choose your own adventure: drug failure or organ failure cataclysmic climate change or something akin to what’s killing bees—colony collapse
more like us than we’d allow, this wondrous swatch of rough
why do I need to say the toads and moor and clouds— in a spring of misunderstanding, I took the cricket’s sound
and delight I took in the sex of every season, the tumble on moss the loud company of musicians, the shy young bookseller anonymous voices that beckoned to ramble to be picked from the crepuscule at the forest’s edge
until the nocturnal animals crept forth their eyes like the lamps in store windows forgotten, vaguely firing a desire for home
hence, the body’s burden, its resolute campaign: trudge on
and if the war does not shake us from our quietude, nothing will
I carry the same baffled heart I have always carried a bit more battered than before, a bit less joy for I see the difficult charge of living in this declining sphere
by the open air, I swore out my list of pleasures: sprig of lilac, scent of pine the sparrows bathing in the drainage ditch, their song
the lusty thoughts in spring as the yellow violets bloom and the cherry forms its first full buds the tonic cords along the legs and arms of youth and youth passing into maturity, ripening its flesh growing softer, less unattainable, ruddy and spotted plum
daily, I mistake—there was a medication I forgot to take there was a man who gave himself, decently, to me & I refused him
in a protracted stillness, I saw that heron I didn’t wish to disturb was clearly a white sack caught in the redbud’s limbs
I did not comprehend desire as a deadly force until— daylight, don’t leave me now, I haven’t done with you— nor that, in this late hour, we still cannot make peace
if I, inconsequential being that I am, forsake all others how many others correspondingly forsake this world
light, light: do not go I sing you this song and I will sing another as well
So my big news is that I am now fully vaccinated, two shots, Pfizer, done. I had it on Friday 6 August, at the Garran Surge Centre again. In case you were wondering, GPs generally can’t do Pfizer because of its super deep freeze storage requirements. It was a little different to my first: it was defnitely a lot less spooky in broad daylight. Also there were fewer people in the queue, and they’d reorganised the flow somewhat. Same mask requirement and ID and counterindication check scripts and efficiency. All went smoothly, though they do stall slightly at the “are you well?” “no” stage before moving on to ensure it’s nothing new. No, I don’t have COVID. I have ME/CFS and asthma.
Once again I did the pre- and post-vaccnation supplements I’d planned before. The shot was again a little ouchie – more painful than the flu vax, but less than a typhoid shot. The next day I was again achey and exhausted and the site was sore. On Sunday I was still in some pain, but I was slightly less flattened – flat as a fine crepe, but not quite so steamrollered. I think this one went a little easier than the first one. By Monday I was getting closer to normal (for me) but still resting. I didn’t cook and I took my shower seated instead of standing, but I only took one lot of panadol.
By Tuesday, my arm had stopped hurting, and I thought my energy levels were back to my usual normal (which is of course horrifyingly low to most people). I managed some morning stretches. I cooked dinner.. But I had a very bad afternoon slump, just like the previous few days. I still couldn’t watch my YouTube regulars – too loud, too much focus needed – so maybe I’m not quite there yet. I still haven’t knitted anything that requires a brain.
Perhaps tomorrow, or perhaps next week, I shall go back to afternoon Critical Role and documentaries, and morning strength exercises. I’ll need to step back my weights: what with the cold, the Bloke travelling, the two vaccine preparatory rests and post-vaccine flattening effects, it’s been a long time. I’ll have to build back up. Maybe I can have some nice biceps again by the time it’s short sleeve weather.
As in, purchasing things. Not as in going anywhere; I haven’t left the house since my vaccination, except for a visit to the counsellor and chemist.
Set One: Kitchen Gear
Yes, I did buy a turnip twaddler. Or at least, an assortment of kitchen gear. This is all very sensible and I ordered it shortly before the Bloke left without even asking him. Why would I ask? He is not the boss of my personal money, and definitely is not waving any controlling red flags! But when I had some medication changes, my common sense and self-control vanished for a while, and I bought a million assorted craft supplies for crafts that I don’t even do. So I decided it was a good thing to get a reality check for online shopping. Is this a reasonable purchase? Let me just get a second opinion here. This one seemed so reasonable that I didn’t bother.
Behold my loot! It is all reasonable. I bought things on special from Victoria’s Basement.
So, one is the apple twaddler (name is now canon), which I have had on my Xmas and birthday wishlist for years, and yet no-one has bought me one (sadface). I have not yet tried it, but I am sick of planning to cook old apples, and being too tired for that whole peeling and coring and chopping shenanigans. And then they go in the compost. I hate waste. Maybe this will help. Also, I have a silicone loaf pan for microwave baking – an apple cake, perhaps?
Next, there are two thermos mugs. The mugs are because I ALWAYS let half of my first cup of coffee go cold. If the Bloke is here, he will often fetch me a reheated top-up, but if not, that’s an extra stand and walk that I may not have the spoons for. The red travel thermos has a popup lid, and it worked OK. Though I think there is a knack to using it without spillage. The handle bumps against my glasses if the spout isn’t fully open, which wasn’t obvious n first use. The shorter, squatter one with the green handle has a screw on lid, and can be used for soup as well. It’s also effective and I am less bothered by the screwing on and off and the feel of the threads than I had thought I might be. Spoonie life hack victory!
Finally, we have a collapsible travel straw and a tiny insulated water bottle – the animal print was random, it was a special offer. I was hoping I’d get the blue watery one, but OK. This is part of a grand plan that I have to design and knit the ultimate handbag. It will have compartments and loops for everything! Carabiners for keys and the straw and anything else that I think of while I’m planning. Pockets for wallet, phone, tablet, disabled parking tag, emergency meds, small water bottle, tissues, hand cream, a mini knitting kit, pens, passport, travel documents etc. Enough space for a medium knitting project such as a scarf of shawlette, but not a jumper. Big enough for a few A4 documents – like a small display folder but not a ring binder. I am going to make it at a tight gauge in Japanese silk tsumugi wrapped yarn. This will be quite hard going, so I want to be sure I have the design right. It’s a long term plan.
Set Two: Yarn
Errr, this one maybe was excessive. In my defence, it’s WOLLMEISE. Knitters know what that mean: very high quality German stuff. Like the BMW of yarn. And it was on sale, and Wollmeise is notorious for not having sales. And I have a plan for some of it; there’s this Kate Davies design Shetland lace 8-colour cowl that I really want to make. I’m on a big Kate Davies kick this year. These are “birdies”, or mini-skeins, so I will have plenty of choice.
That’s the one I want to make, and here is a set of ten colours that I have ordered. It only takes 8 colours so I will probably drop a beige-pink and a blue-grey, but I’ll decide when I have it in person.
Does that sound like self-justification? Well, yes, I didn’t really need it. I was feeling a bit down and self-pitying one day, after a really rubbish night’s sleep. I hate it when that happens. I get anxious that my pills are going to stop working, and that my illness is getting worse. Or was it that I had too much caffeine too late in the day? I’ve been drinking black tea. Or was it stopping the supplements suddenly? Overstimulating actions and exciting TV and the physical effort of a shower? Just random chance?
And of course, the Bloke was away, so no reality check. He’d probably say I have enough yarn and he’d be right. It is beginning to be a burden: there is more than will fit in the designated storage space. But anyway, I suppose a bit of comfort shopping now and then is not too harmful. I don’t think it was entirely wise, but I WILL use it, and I don’t have a lot of indulgences, now that travel and fine dining are mostly out.
At least I resisted ordering from Haigh’s, or the Cheesecake Shop, which is alarmingly easy on menulog! The Cheesecake Shop has no baked lemon cheesecake, and their carrot cake has no cream cheese icing and doesn’t come in quarters, or things might have been different. Also their cupcakes are at least 50% icing by volume, so even more by weight. Ridiculous.
Food is an indulgence, and I don’t worry too much about healthy stuff. The occasional dessert is fine but I am trying not to overdo that. A $6 punnet of raspberries, oh yes! Some fancy cheese from Ainslie IGA. One can also order cheese online, but the prices tend to be a little steep. Normally I would buy one piece of fancy cheese, not four. So I was very surprised when such a package from Cheese Therapy turned up yesterday morning. I assumed it was the Bloke, but he said no! I did not discover from whom until the evening, and that was another surprise: it was from the Bloke’s family.
I did also indulge today with a delivered breakfast. This was somewhat practical, though. We had a scheduled power outage, and despite me putting it in my calendar, noting it in my journal, and the bloke sending me a reminder, I STILL forgot. Mornings are not the best time of brain. So it was berry pancakes and coffee from Ciao cafe in Braddon, via menulog. (Plus a piece of cannoli for later.) It arrived just before ten, which is when I usually eat breakfast. Yummy. And the coffee was decently hot. And wouldn’t you know it, the power came back a couple of minutes before the delivery arrived – two hours earlier than the notification said. I could have made my own breakfast after all. Womp womp. But oh well, I was not to know and now I have cannoli!
This month is all about COVID. I have my first vaccination on Tuesday the 6th, and I start my supplement regimen on Friday 2nd (today as I write, but it won’t be when I publish.) How well this will go is quite the mystery. Read on for the answer!
It’s also the month when the Bloke was to be travelling the outback for two weeks. The Simpson desert – oops, but SA is now out of bounds. And Alice Springs is in lockdown, and he’s supposed to be flying home from there, while some of the group proceeds to WA. Where currently they can’t go, unless they’re somewhere other than NSW for 2 weeks. Some people are cancelling. They’re having meetings to discuss alternative possibilities. Also, of course, if I get really badly sick, that would also change. Is it on? Again, read on.
I had my vaccination on Tuesday 6th, at night, out at the surge centre on Garran Oval. The Bloke drove, because although I could have got there alright, I did not know if I would be OK to drive back. It was kind of weird: who has medical appointments at night? The odd wooden makeshift parking barriers, the bright lights in the darkness, the pre-fab building, and the queue of masked people gave it an air of something from a post-apocalyptic movie.
Checking in, questions, sanitiser, it was all supervised at every step, and very efficient. Once I got in, I was sat at a nurse’s station where she asked me the usual verification questions and a few extras about counter-indications before I got my jab. The vaccination itself was a little more painful than a flu shot, but much less painful than a typhoid shot. I was expecting to be asked to move to a waiting zone then, but instead she pushed a button on the wall and moved her kit away on her trolley to go to her next patient. Huh. Anyway, the button set a 15 minutes alarm, and when it went off I was allowed to leave – after some checkout questions and followup appointment set at the departure station.
The Bloke drove me home. I then took all my supplements, with the addition of an antihistamine, and panadol at bedtime. I slept very well. Random? The antihistamine? The panadol? I do find that panadol helps me sleep. Sometimes I forget that I’m in pain: I live my usual life at one to four on that 0-10 pain scale and 1-2 have come to seem like baseline normal.
Day one after the vax (Wednes): I feel pretty normal by my usual standards. My arm hurts a bit; I feel a bit stiff; and my morning headache is a bit above normal, but otherwise it’s all good. It’s less than 24 hours so too soon to tell. High fatigue, at times too much to read even fluffy murder cosies. Also I had a strong appetite – I ate a lot more than usual (antihistamine, probably). Early to bed, and cautiously optimistic.
Day two (Thu): more good sleep, though high fatigue is present. I can’t summon the energy to talk to people so cancelled my usual afternoon guests. I’m more optimistic now. I don’t think I’m going to have a very bad reaction, just this general enhancement of the ME/CFS. Achey, tired, meh, take some panadol and rest. Still extra hungry, and I still needed to go lie down early. (In TMI: I finally peed bright yellow after starting my regime last Friday. Obviously I need to take more vitamin B more regularly.)
Day three (Fri): I doubt much will change now. I am absolutely not having a bad reaction. In fact, I feel quite good in comparison to yesterday. My energy is back up to “normal” ME/CFS levels (i.e, about 85% couch-bound). My arm has stopped hurting. My aches are much reduced. I have visitors not once, but twice, and I can chat away. I still went to bed early, but I read until my normal lights out.
I’ve stopped the antihistamine, and my appetite is back to normal. (This is so weird, and it explains a lot about my weight. Why is this not common knowledge?) I’m still taking the other supplements, and will continue that for a week.The Bloke’s vacation is definitely going ahead. Not that there was a lot of doubt on my behalf, but that small percentage was always there. He’ll be back by the time I get my booster, so even if there’s any problems there, I’ll be cared for.
The Bloke departed early Saturday morning in his mate’s 4WD. I’m 100% OK with this. I didn’t for a moment consider asking him to stay; I feel well enough to cope with a couple of weeks on my own. There’s lots of food in the fridge and freezer, and there’s always Menulog. I have the car, and if I have any trouble, I do have a friend or two I can call on. Cleanliness standards may slip somewhat, but it won’t get too bad.
So he’s off somewhere, but where? It’s still a desert 4WD trip, with lots of camping. On the first day, he was off super-early – in theory to Ivanhoe via Wagga (to collect someone from the airport there). That was not on the original plan, but the Simpson desert is now mostly out of bounds. Both SA and WA are closed to all of NSW. In practice he seems to have ended up at Hay. Something about someone losing a wheel. Did they check under the couch? That’s where I find my lost things all the time.
Currently the other states are only closed to Greater Sydney and specific lockdown areas. So it looks like the plan, once they get out of Hay, is to noodle around outback Queensland and the Northern Territory for a couple of weeks. He’s supposed to fly home from Alice, which was locked down last week, but should be fine by the time he’s ready to come home.
The Bloke is away for just over two weeks, and I’m actually quite glad of it. He says I’m not much trouble, but nonetheless I’m sure it’s important for him to get away from the carer role for a little while. A break from responsibility will be good for him. OK, I don’t need personal care. I can wash and eat and get around a little bit. But he has still had to pick up almost all the housework, and he’s constantly fetching and carrying things for me. Get me water, get me coffee, change the bed, do the laundry, do the dishes, clean everything, cook and shop quite often, drive me places when I’m too tired. If I were on my own, I would definitely have to get home help.
So it’s a bit hard for me, but I believe it’s worth it. I miss him, of course, and it’s harder work just getting by. I drop my exercise in favour of stacking the dishwasher and other household tasks. I’ve written about this before, so there’s not much point rehashing it. It’s pretty much the same as last time. Two weeks? No problem, I know how it goes, I can cope. Eggplant and anime and historical dramas FTW!
As you know from my previous couple of posts, June was a month with vaccinations. Will I get anywhere else? How ill will I get? I’m thinking a monthly retrospective might be of some interest. This is long, but it starts with a summary, which is all you need. It’s been a bad month, but I’ve made it through.
Finish off & label my Companion House knitting donations for the year, and deliver them.
Finish making my red cardigan.
Get a notes app for my tablet.
Get a good e-reader for the tablet.
So how did that go? Since I started the month on a nasty cold and then had the fluvax and its aftereffects, actually not so well. I definitely made it well over the 90% couchbound level, which I manage to squeak under in better times.
Well, I had some tech problems with the ME registry so it wasn’t as simple as I’d hoped. The app was also a bit tricky as there was no auto-respond to the request, but I eventually got an email. (I’ve tried some symptom trackers and gave them all up as no help. But this is one is for research, so it makes me feel helpful anyway.) This is incomplete, but not because of my lack of attention.
Tablet apps: the notes was easy. I looked at a couple of alternatives, but Google Keep was far and away the winner, simply because it synchs automatically between phone, tablet and laptop. Done.
The e-reader question is rather trickier. I have the Kindle app, but I keep that for Amazon purchases. But I also have quite a collection of epubs and pdfs – knitting patterns and language resources and ME resources; Baen books, the odd kickstarter or humble bundle, Project Gutenberg books etc etc. I probably need less brain fog to decide on a solution. Right now I am trialling MoonReader and FullReader, but I miss the iOS GoodReader app’s tabs. I like having more than one book open at a time. At the moment I’m keeping them both: one book open per reader! This is sub-optimal; how will I remember which books are stored in which app? But it will do for now. Further work needed.
Self-care was quite undercut by illness. Yeah, I washed and hydrated and took my meds. But I showered considerably less than I wanted and exercised a whole lot less. I did stretch almost every day, but didn’t touch my weights until the very last day. Though I did manage some bodyweight strength exercises closer to the end of the month.
Medical: the fluvax happened. The doc visit (chronic care management plan review, parking permit, mental health care plan, prescription checks, discuss COVID vax) went smoothly. And joy! The COVID vax guidelines changed, so I can now get Pfizer without having to write begging letters. I’m now booked in for early July, so not this month after all. I plan to start a supplement regimen a few days before; and I did all the research and organisation for that.
The parking permit could be got online, once I got the doctor’s stamp on the paperwork. The Bloke was kind enough to do that step for me. It takes longer to arrive in the mail than going in person: but then again waiting for the mail might take less time than waiting for a good day.
Knitting pottered along. I’ve been mostly doing simple things, as I’ve had a lot of bad days. I did manage to finally get my stash catalogue up to date on Ravelry, though not my projects. I also ordered some yarn for a jumper for the Bloke. It’s green. His last one was green too. He likes green. He also likes this one pattern that is only available in Norwegian. I think I’ve got it translated OK, what with Google translate, and my own and a friend’s knowledge of knitting, and a different free pattern with a shawl collar (that was the sticking point). One Herrergenser med sjalskrage coming up.
I’ve made a few things – a little finishing off of works in progress, and some new items. The charity bag is pleasingly substantial, even though I did not make it out to the drop-off. I also did not finish my cardigan, though I did get the seams sewn up (which was the sticking point; I hate sewing.)
Left the house: social or other non-health – 1 Left the house: health-related – 4 Had visitors 7 times, only cancelled once. Showered only 6 times, which is bad. I usually manage every 3 days; the illness and post vax symptoms hit badly here. Cancelled two social events, one visitors and one outing. Missed almost all of my exercise program, except for the stretching.
Knitted items finished: 4 hats, one scarf, and one cowl (aka infinity scarf). One of the hats was fairisle, but the rest were mindless things, good for the bad days and the bad times of day. I also got the red cardi well progressed; it needs only half a sleeve, a bit of collar finishing, and pockets attached.
Day types: Collapse: 7 Rest: 13 Potter: 5 Out: 5
And that’s it. A pretty crappy month, but it had its bright spots.
And now it’s July. On the 1st I did a good exercise session, had an overdue shower, and had a visitor, so that’s a decent potter about. ONWARDS! I shall probably be not going out much, with the latest COVID anxieties. Canberra is not locked down, but Sydney is not so far away and people travel a lot. We have actually had a case here, and a few self-isolating after Sydney trips, and we are sensibly on mask mandates. I have my vaccination soon, hurrah! I hope it will be mild, and that I won’t have to put off so many showers. The month looks very uncertain: will the Bloke be going away or not?
Full Details (only for me and the masochistic)
You may choose to read my detailed daily notes, but I’m not sure why you would.
Unless otherwise noted, I am on the couch playing games, reading light novels, or watching Youtube/TV and knitting. I get my own breakfast and lunch, though on a collapse day, lunch might be a muesli bar and some dried fruit from my cache by the couch. Or nothing, if I’ve delayed standing up so breakfast was extra late.
Tuesday, 1 June: Starting the month on day 3 of a nasty cold. It’s settling in to the chest now, so that means asthma meds. Tired, sneezy, clumsy spillage, necessitating extra energy that I don’t have for the clean. Half a cup of cold coffee went all over my couch corner, my PJs & dressing gown. I’m definitely NOT going to the new tai chi class I found! Also not cooking, although Tuesday is usually one of my days. Did contact ME registry over some tech problems. Feeling too brainless for complex knitting. Even managed to mess up a simple hat decrease.Too tired to shower. (Day type: collapse)
Wed 2nd: day 4 of the cold, well into the chest though otherwise rather better. Asthma meds. Being sick adds to brain fog so today’s clumsiness issue was cutting my finger while slicing bread. Also knitting errors. Did some more ME registry emails and ordered some groceries online, so there was that. Shower postponed again (Day type: collapse)
Thu 3rd: day 5 of cold, much the same as yesterday. No energy. Had to ask the Bloke to go to the chemist for me, which I don’t often do. Also had to cancel my regular arvo visitors. I did hang out my laundry, see my counsellor (the Bloke drove) and have that overdue shower, so it was still a pretty big day. (Day type: out, but also cancelled stuff, but then did other stuff. Umm. Yeah, out.)
Fri 4th: day 6. Poor sleep, woken often by coughing then a long spell around 5-6am (over-stimulated yesterday?). Got back eventually, with a little help from half a pill, but this always leaves me feeling groggy and dazed. Nothing really done in the day. But we had friends round in the evening for pizza and movies, so that was lovely. (Day type: collapse)
Sat 5th: day 7, surely the cold must be over now. But I’m still coughing and low. Today we are getting a delivery from Harris Farms, and I have some meals planned. (As long as the meat and fish were actually included, anyway – which they were, but no bread. I’m finding Harris Farms to be irritatingly almost but not quite reliable.) Put the cold stuff away, then the rest later. Feeling a bit better, and was able to cook some rhubarb, clean out the fruit crisper, do some complex knitting for the first time this month, and go to bed on time instead of early. (Day type: potter)
Sun 6th: day 8, still coughing but not much any more unless I try to talk. Or laugh. Or move. Assembled a dinner, cleaned up a bit. Didn’t shower but washer wipe quite thorough. (Day type: potter, though light.)
Mon 7th: peak flow back to normal, so no more asthma meds. Did about half my exercise. Pottering – to garden for bay, lemon, oregano. Slow roast lamb on, spuds cleaned, tea made. Full dinner done, shower later. (Day type: potter)
Tues 8th: slightly poor sleep. Still a bit of a cough, but basically recovered from the cold. OUT – to counsellor and a brief stop at the local supermarket. Crashed out in arvo. (Day type: out)
Wed 9th: still very slight cold after-effects. But also outing after-effects. Not full on PEM, but hints at it. Achey, headaches. (Day type: rest, though verging on collapse)
Thu 10th: a big day. At doc for fluvax and chronic care review; then a couple of afternoon visitors. Very tired in evening; skipped my planned shower though I knew I would regret it. (Day type:out)
Fri 11th: woke achey and with a sore arm. Actually, I could feel the ache expanding down my body throughout the day. Was OK enough for evening guests with Shakespeare & Thai food. Henry VI pt 1 is, as the Bloke put it, a train wreck. No shower. (Day type: rest)
Sat 12th: oh yeah, those full body aches. Pass the panadol. Yesterday Me was smart and ordered extra Thai so we have dinner sorted, and I have Tom Kha Gai for lunches – the ULTIMATE chicken soup. Siam Twist are the best – it’s not on their current menu but the chef did it for me specially. Still no shower. (Day type: collapse)
Sun 13th: aches subsided but not gone. A reasonable rest day, with a brief visit from a friend. I finally managed a (seated) shower – those wet washer wipe downs are all very well, but my hair was getting unpleasantly manky. (Day type: rest)
Mon 14th: I had some to-do items but a) I forgot it was a public holiday and b) I relapsed. So many aches and pains. Much panadol, little movement. (Day type: collapse)
Tue 15th: bad sleep. Much coughing. Missed going out to a small social ME group meet. (Day type: collapse)
Wed 16th: bad sleep again. Less coughing, but oddly exhausted in the evening. (Day type: rest with a hint of collapse)
Thu 17th: On the mend again? Had visitors and a telehealth consult. Unusually exhausted in the evening again. Wanted shower, but too tired.(Day type: rest with a hint of collapse)
Fri 18th: not too bad, but I’m not pushing things. I got a little more exercise (stretch and a little strength), and some online and phone things done – vax appointment, dinner order. Evening visitors for our regular Friday movie night – Henry VI pt 2 this time; we are running through The Hollow Crown. Dinner order went wrong and things ran late. Still no shower. (Day type: rest)
Sat 19th: Bloody awful. Could not sleep. Achey everywhere, nauseous, throat glands painful. Why??? Had midday nap. No shower. My hair feels horrible. (Day type: collapse)
Sun 20th: Good sleep – I feel cautiously optimistic, but glands are still sore. Showered in the day, made a casserole. (Day type: potter)
Mon 21st: Cautiously optimistic again, though some bad headaches. Since I need to go out next day, I only set myself one task: to cook dinner. Which I did. (Day type: rest)
Tues 22nd: A busy day. Plan was to drop scripts at chemist, go to counsellor, have lunch and a small shop at As Nature Intended. They are next to my counsellor, so it’s easy. Pierogi and salads are excellent. They also do a nice line in bakery goods and fancee organic paleo gluten free faddy stuff. Finally pick up scripts on the way home. Get home & crash. However, I was actually NOT due to see my counsellor: I had confused this outing with my parking permit plan. Brain fog or normal human brain fart? Who knows? Still did all the rest, oh well, we needed the bread & coffee, and a lunch out is a nice change. (Day type: out)
Wed 23rd: well obviously I am resting today. Hovering on the edge of PEM, aches & pains & glands up but not serious. Should have showered, was too tired. (Day type: rest)
Thu 24th: A quiet day, with a visitor, and also a shower. (Day type: rest)
Fri 25th: Up and down a bit dealing with the plumber (the biennial electric eel.) Some mental exertion sorting my supplements, blog writing, bill paying, food ordering, with an annoying power outage interruption. And our Friday evening visitors. Turkish delivery food and Richard III with Benedict Cumberbatch! The end of the Hollow Crown. Something lighter next week, perhaps. (Day type: potter)
Sat 26th: Finishing up planning my pre-vax supplement regimen. Started a new knit. Cooked a curry from a quality pre-pack, and used some Turkish stewed beans for a side dish. Should have had a shower, but too tired. (Day type: rest, not quite up to potter)
Sun 27th: The Bloke and I planned to go out to dinner, which we did because I felt OK (one can never be certain this will happen), to Kagawa in Dickson. (His treat because he got a windfall from being an Actor! On the telly! An extra in an ad, that is.) Also showered and posted my supplement plan on the blog, and started a new knit because I had nothing portable. (Day type: out)
Mon 28th: Need to rest because I was out yesterday and Tuesday is a big day. Cooked a quick pasta sauce. (Day type: rest)
Tue 29th: plans fell though, so a free day after all. Cooked a frittata with salad and wedges for dinner. Was a bit tired still so not much else. (Day type: rest)
Wed 30th: proper exercise in the morning, but then I felt too tired for my planned shower later. (Day type: rest)
Recently I mentioned to a friend about how I need to be cautious with alcohol but I still use some. It increases the effects of some of my medications, and is therefore counter-indicated. But sometimes that’s exactly what I need. He commented with some (genuine) concern that this is known as “self-medicating”. That is usually considered to be a bad thing. Just google it and see.
But there IS no standard medical regime for ME/CFS. You can’t go to a doctor and get proper treatment according to a standard regimen to maintain the best health you can. (Let alone for a cure, now you’re dreaming.)
I do consult my GP regularly. I have a chronic health management plan and a mental health plan. While I may take booze and pills and powders, I’m not worried. My alcohol intake is low (3-4 standard drinks per week) and my GP is OK with this. My pills are prescription meds, which are all legally kosher, or standard over the counter types. And while I don’t have much in the way of powders, unless you count sugar, I do sometime spoon some D-ribose into my coffee or porridge.
Everybody I know with ME/CFS is taking supplements – not just vitamins but some more obscure items from every tradition and research hint and fad. Or avoiding things like gluten and sugar and wheat. None of this is entirely research backed. We work on hints from super-preliminary research findings, and treatments for related co-morbidities or similar symptoms in other illnesses, and plain old gut instinct and guesswork.
We will do anything that makes us feel better. Probably some of it is placebo, some of it is real but small, and some things work for some people but not all. I’ve tried just about every sleep-promoting supplement and herb under the sun, and the only reason I’m not still taking them is that they just don’t work for me. A lot of the “refrain from” suggestions seem to work for people with more gut related symptoms, but I’m more of a neurological case. For example, I’ve never even heard of medications for sound sensitivity or POTS.
Apart from my prescriptions, I regularly take a few things. Vitamins for once medically diagnosed deficiencies that seem likely to remain problems, and some extra B complex. Herbal relaxing teas, hops, and kava for stress. D-ribose if I’m going out and if I remember – I often forget this one, but it is good for a tiny energy boost. Lots and lots of panadol. And the occasional shot of booze for a nightcap.
My latest venture in self-medication is preparing for my vaccination, which is to be Pfizer in early July. In doing so, I am being guided by recommendations from Dr Nancy Klimas, and by a discussion on Health Rising with advice from several experts.
So, let’s try to sort out a plan. I am liberally copying and pasting from Health Rising below.
Days after: (for a few days based on how you flared from the vaccine – take until you feel that you are back to baseline )
50 to 75 mg Benadryl
all supplements listed above
lots of rest
TWO: Dr Theresa Dowell Three days prior to the vaccine, increase antioxidants. Depending on which antioxidants you are taking, consider these doses: Vitamin C 1,000 mg twice daily, Ubiquinol 200 mg twice daily, Curcumin 200 mg twice daily, Glutathione 250 mg twice daily.
On the day of the scheduled vaccination, make sure you are at baseline. In other words, not flared. After getting the vaccine, REST for 2 days. Avoid stressors.
Before the vaccine, make sure you are taking enough antioxidants, particularly NAC or glutathione and CoQ10.
The big mediator of post vaccination relapse and immediate reactions is mast cell activation. If it happens immediately, that is anaphylaxis, but if it happens slowly and low grade over days, the mediators mast cells release can drive a classic ME/CFS relapse.
So, take an antihistamine before and for several days after the vaccine – the strongest one you can tolerate. (Benadryl is one of the strongest, Zyrtec is another good choice).
There are natural supplements that act to block or clear histamine and stabilize mast cells such as alpha lipoic acid, ascorbic acid, B6, diamine oxidase enzymes (DAO), luteolin, N-acetylcysteine (NAC), Omega-3’s, riboflavin, SAMe, quercetin, and natural sources of theophylline like green and black teas.
Putting It All Together
Antioxidants beforehand. I have Vitamin C, Cucurmin, NAC, glutathione and CoQ10. Ubiquinol is the same thing as CoQ10. I won’t bother with famotidine: it’s for reflux, and I have good guts. I don’t have quercitin but it’s just another antioxidant and is found in coffee, red wine, onions, berries, citrus & broccoli. Too easy. Also cherries, but they are out of season. Must ask the Concerned Friend to bring red wine instead of beer next Friday! I will be starting my regimen on Saturday, so that sounds like a great intro.
On the day, antihistamine, antioxidants.
For some days after, antihistamine and more supplements. Basically the same set, but add SAMe which I also have, and B6 which is easy enough to get. And real tea instead of my assorted fruit and herb tisanes. And REST, REST, REST.
If all goes well, at the end of that week the Bloke will be off for a couple of weeks touring the Simpson and other parts of Central Australia. I will be on my own, but well supplied and I can call on friends for emergencies.
The NSW COVID outbreak may mess up his plans, though, with border crossing problems. We’re not in Greater Sydney here, which makes QLD & NT OK, but WA has made it a blanket ban on all NSW. But also the rules are changing on a daily basis rght now. And I suppose that if I get extremely sick, that would mess things up, too, but it’s not something I anticipate with Pfizer. I’m hoping for an easy go of it, but some acute reaction that resolves quickly also seems possible.