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.
I’ve been slowly filling out my surveys on the You+ME Registry, which BTW you too can do, even if you are well: they need some controls. It is new to Australia, still a little buggy, but I’ve been reporting and they’ve been fixing and so it moves along.
Anyway, one of the surveys asked me what percentage of my waking hours I spend in bed or reclining on the couch. I actually don’t know. I chose the 50-90% option, thinking it’s probably 80%, but was that correct? I’ve been meaning to do some sort of “day in the life” thing. You can look at my busy schedule, and I can look at the numbers.
In reality, the times on this are not identical every day, it’s a decent approximation. I am in bed asleep (I hope!) from 11pm-7:30am, so that makes 15.5 hours to account for. Let’s pretend it’s a day in a reasonable week, with no PEM and no extra illness.
There are three or four kinds of days, each different. In decreasing activity order, there’s an outing, a light potter around the house, or a rest. There’s also a collapse option, which is worse than a rest, but I’m not using that for my calculations. A good week would have two outings, two rests and three potters.
1. The Morning
7:30-8:30am Wake up slowly. Do some stretching. Get up. Wash, exercise, dress, take meds, make coffee, prep breakfast, maybe get some dinner prep started. Some of the exercise is lying in bed and stretching but I’m still counting it as action. 30 mins movement. 45 max, or it could be less on a day I plan to go out to save energy. It’s also way less on a bad day with illness, PEM or bad sleep. I’m thinking of a fairly normal week with ME so say 30min average. (Tally: 30min)
8:30-10:00am Couch. Coffee. Games. Rest. Nothing strenuous. Every day.
10:00-10:15am Stand up. Finish making my breakfast. Bathroom break. Maybe get some dinner mise en place done. Maybe a spot more exercise. 15 mins. (Tally: 45min)
10:15-11:30 Eat breakfast on the couch. More games or web surfing. If I’m not too anxious I might read the news.
2. The Good Hours
The window of 11:30-4:00pm: I am mostly alert. That’s the absolute tops; it’s often less, like 12-3, and none at all on a bad day. I can’t use all these hours for activity; if I do something active, it will be curtailed.
This is the hard one to estimate. I may well be alert, but I am most likely still on the couch, barely moving. I could be writing a blog post or some emails, studying a bit of Japanese, ordering some groceries online, or reading a good book. There could even be visitors.
This is the window where I schedule appointments, shopping trips, or the odd lunch out. I don’t feel safe driving before or after this time. And it’s when I do any household chores I’ve planned, or any serious dinner prep if I’m cooking. (Yes, yes, “serious” means peeling a few veggies and putting some things on an oven tray, but it’s STANDING UP, yo!)
We have three basic options here.
1.Go Out I can usually only make it out twice a week. The length varies, but let’s say 3.5 hours a week. (Might be three hours one day, might be only half an hour, but it probably includes driving wherever so it can’t really be any less than that.)
2. Rest (or Collapse) I’ll have two days of minimal action, probably the days after the excursions. Or the 24 hours after, but we’ll assume this averages. In this case I won’t get off the couch much. A few minutes to get lunch, or tea, and a bathroom break. The very barest necessities. Say just under 10 minutes a day, or call it an hour a week. Add another 15 minutes to do some small thing if I’m just resting, not collapsed, so this is 1.5 hours in a good week.
3. Potter Around On a reasonable day if I’m not going out, and not decisively resting, I’ll get off the couch more often. Hang out the laundry. Do some dinner prep. Go pick some herbs and lemons. Get in the mail. Clean out the fridge. This would probably be about 30-45 minutes (over 3 or 4 sessions, not all at once!) on top of the minimum on a rest day. Let’s call this 2 hours a week – two at 45m and one at 30m. Seems legit.
Do the arithmetic: average of (3.5 + 1.5 + 2)/7 = yes, that’s exactly one hour a day! You may suspect me of fudging the numbers, but really all I did was some rounding off and it just happened. (Running tally: 1h 45m)
3. Late Afternoon & Evening
4:00-6:00pm. Watch YouTube and knit. (Or on a bad day, play games.) Even on a good day I will be very low and exhausted here, and it will be the simple mindless knitting.
6:00-6:30pm. 3 or 4 times a week, do some dinner organising. This will probably be a couple of 5-10 minute sessions, with more sitting in between. (Possibly some at 4pm when I suddenly realise it’s now or never, but we’ll fold that in here) If I’m not cooking, 5 mins to pick up whatever the Bloke has cooked, or what we have ordered, or 10 minutes to re-combine some leftovers into a meal. Oh, and there’s a loo break. Let’s say an average of 10mins/day. (Running tally: 1h 55m)
6:30pm – 10:00pm, eat dinner, watch TV (well, usually streaming), chat with Bloke, knit. This is mostly a nice bit of the day, unless I’m collapsed. It seems like almost normal human activity. Especially so if I am feeling alert enough to knit something complex – fairisle, lace, something with charts to follow, some new technique. I’m usually also alert enough to drive, but that option rarely arises. Maybe if we’ve had a dinner out and the Bloke’s had some beers. This would be less than once a month, but it’s still an option.
10:00-10:15pm. Get ready for bed. Bathroom, wash, tidying etc. Maybe a bit less, but maybe a bit longer if I’ve managed a shower. Say 15 minutes average. (Running tally: 2h 10min)
10:10-11:00pm. Rest in bed from the labours of the past 15 mins. Lying in bed, reading something light, reviewing a bit of Japanese vocab. Lights out at eleven.
The end result averages out to 2h 10mins per 15.5 hours, which is 14%. I was right! It IS less than 90% couch-bound, though only just. But that’s in a good week,with no collapses, a couple of outings, and some decent home time. Sometimes some of those 15 minute blocks of activity shrink to ten or five, and sometimes I might do one fewer. The first half of this month has been extra low because of a cold and the aftermath of the fluvax, so I’m sure I hit the 90% mark.
Two hours a day doesn’t initially sound too bad. You could imagine getting quite a lot done in two hours. But most people don’t think of a “two hour” slot as including things like getting dressed, showering, using the bathroom, making a cup of tea and so on. Or packing a bag, driving and parking and walking to the meeting room, and then repeat to get back home. That’s just taken for granted.
But for those of us with ME/CFS, this is a part of the budget that has to be considered. A one hour tai chi class sounds nice, and sure, I’d have the spoons for that on a good day – if only I could wish myself magically dressed and packed, and teleport there and back. In reality, it isn’t really just one hour, it’s two and a half hours. Zoom sessions and Youtubes are a great option here, if you can find good ones, and that’s something I’ve been investigating more recently.
Some people with ME/CFS decline the fluvax on grounds that they have terrible side effects.They’re not antivaxxers, I won’t discuss those fools. These are people who have weighed the balance. It’s a legitimate cost-benefit analysis for us. People have reported being flattened for months after their shot – and if you don’t go out and see people you’re not very likely to be exposed to the flu. So what is the point of suffering a bunch of very nasty side effects for a very low chance? I’ve certainly had far fewer respiratory illnesses than I did before ME/CFS confined me mostly home, and worldwide cases of flu dropped drastically with COVID quarantines and restrictions, so I do see the point.
(That said, last week I ventured out twice, once for a brunch that was my first non-medical outing since Easter, and once for a meeting at the ME/CFS society. And now I have a horrible cold.)
I’m on the pro-fluvax side of the equation, as my side effects are pretty mild. Occasionally I will point out on the various forums that flu is a really terrible disease, and if you only get mild side effects like mine, it’s totally worth it. I had real flu once and it is nothing like a bad cold. It’s more like getting run over by a truck. For weeks. So, although I expect I will be feeling quite ill and so-called “flu-ish” for a few days after, I still get the fluvax. I’ll cope. It’s quite like PEM, actually. I get the nasty body aches, headaches, sore throat, painful swollen glands, and super-extra fatigue. This is familiar territory for me. Chow down on the panadols, don’t schedule anything that requires even minimal effort, and wait it out.
The COVID vax is much less familiar ground. Obviously it’s a good thing and we don’t want COVID, but when, and which one, and what do we expect? Once again ME/CFS is in the “not really serious” group (really? still?) so we were excluded from rollout 1B. Bummer, I thought, well, I can wait. I don’t get out much and there’s no COVID in Canberra.
BUT here’s the rub. As an over-50, I can go get my vax right now. Or at least, two weeks minimum after my fluvax. So I’m booked in for late June. But it’s Astra-Zeneca and I think I probably want Pfizer. And now the government is saying Pfizer should be kept for under 50s and group 1B, so I don’t qualify. Ummm, what? NOW I care.
The thing is, reports are coming in from the ME/CFS community that the Pfizer vax is a breeze, while the Astra-Zeneca is leaving people with bad side effects. It’s currently a collection of anecdotes and an informal poll at Health Rising, but it does seem to go with the larger scale population studies. More local side effects with Pfizer (pain, swelling, redness, itching, swollen armpit glands), but you still get a strong chance of those with A-Z. But very substantially more systemic side effects (diarrhoea, fatigue, headache, chills, nausea) with Astra Zeneca.
So it’s pretty well guaranteed to be a little ouchie. But it looks as if the Astra-Zeneca side effects might be more severe and linger longer. It’s a gamble, essentially. Plenty of people have problems that last a week or less, and I can deal with that. But I don’t want to get seriously sicker – and maybe ten percent seem to be seriously sicker for a long time. I’m not keen on those odds. Still, eventually the national borders will open, and there will be risk, and I don’t want to die. So I can’t postpone it forever.
I will be discussing it with my GP very soon, and we shall see what the practice can do. I might get stuck with Astra Zeneca and just have to hope it’s OK. You never know, I might get super lucky! Like some people with “Long COVID” report recovering after the vax. And do you know what Long COVID looks like? Yeah, it looks very like ME/CFS. Hmm. Even if I don’t get personally lucky, maybe at least the research will get a nice boost.
So what I’m guessing is maybe 1% chance I improve, 10% chance nothing happens, 50% chance I get sick for up to a month, 30% chance I get sick for rather longer, 10% chance I get six months or more of being extra sick. This does not add up to 100% for two three reasons: a) I don’t really believe in the 1% b) origin of statistics = pulled out of my arse c) a typo that I left in to emphasise point b).
I have heard that anyone can reduce the chance of bad side effects with seriously good attention to hydration before and after. People with ME/CFS should also take antihistamines before and after, plus some supplements that I may or may not have handy after I experimented with them a while back. The advice is unpublished, but it comes from the highly knowledgeable and respected Dr Nancy Klimas, so it’s as credible as anything can get right now. It’s also advice regardless of which vax, so it must be time for some more supplement shopping.
Depend upon it, sir, when a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully.
I really must get around to reading some Samuel Johnson.He seems to have been a pretty smart cookie. While checking wikipedia for this famous quote, I also found this rather Buddhist-seeming item:
The fountain of content must spring up in the mind, and he who hath so little knowledge of human nature as to seek happiness by changing anything but his own disposition will waste his life in fruitless efforts and multiply the grief he proposes to remove.
This is very apropos to living with a serious chronic condition.
So, in my first post this month, I shared a video on the WORST things about ME/CFS (which weren’t actually the worst). This is extremely easy, because there are a LOT of horrible things about it. I didn’t even go near listing out most of my symptoms and limitations. It’s much harder to think about good things, but there really are some. And on some days, I can sometimes even think of what they are!
So let’s itemise:
The funny stuff
Appreciating the small things
Finding some peace
Learning new ways to do old things
Learning new things
Appreciating my memories
The Funny Stuff
You don’t have to dress up for it! Or even make the effort to wear matching clothes without holes in them. Bright green and orange tie-dye PJ pants, a weird purple goth Totoro T-shirt and a red cardi with holes in it? Who cares? You are warm and cozy all set for your day on the couch.
And then there’s all the running jokes. The Bloke has recently been to the Far Wilds of QueenBeeAnn, where he sampled the local cuisine. Something called a Suteiki Sanduiccho, I hear. Such daring!
Appreciating the Small Things
The first time I became aware of this as seriously important, rather than a casual pleasantry, was when I had a very bad scare. I had been tentatively diagnosed with a fatal disease, with a life expectancy prognosis from 6 months to maybe 6 years. It actually took a good 6 months to work out that I had only a very minor variant that wasn’t going to kill me after all. I spent about three weeks thinking I was going to die soon, and then when the bone marrow biopsy came back negative, I had another six months of tests for the less severe variants that might kill me more slowly. I am so far the only person I’ve ever heard of who was actually PLEASED to be diagnosed with ME/CFS. Hey, not dying! Great news!
I remember vividly that day I had the scare. The doctor hadn’t told me what it was, so I was sitting in an armchair at a friend’s house looking it up on my phone – and growing steadily more concerned as I read on. I drove home and went for a short walk around the block to clear my head a little. (I could still do that then.) I was looking at the autumn leaves, the blue skies, the birds, the late blooming roses in people’s gardens along my route, and wondering if I would ever see an autumn again. It was so intense and powerful, as if the whole world was beaming in to me, and everything was unspeakably beautiful.
One cannot live in this heightened sense of perception, I find. But there are possible moments, and the experience has taught me to savour them when I can. The sweet softness of a purring cat’s fur, the joyous hand of a bouncy wool, the calm feel of fresh sheets, the satisfying colours of a well-dyed yarn, the tranquillity of a peaceful night on the couch watching TV with the Bloke and exchanging occasional comments, the aroma of quinces brought over by a friend, the taste of a friend’s home baked pie, the warm comfort of a bowl of porridge on a cold morning… sensory joys are all right there for the taking. It is possible to enjoy even a very tiny life.
Finding Some Peace (some)
The things that have actually helped me are acceptance, pacing, careful non-aerobic exercise (stretching and strength), and medication for the associated sleep disorders. Acceptance was (and is) by far the hardest, because it meant acknowledging that my old life was really over. It’s involved a lot of grieving and I’m sure I’m not done yet. I’ve been lucky to find a very good counsellor. It’s been a long path, not least because I’ve never been very in touch with my emotions. All intellect, that was me! I am a Vulcan! I am a rock!
Well, almost all. The joys of physicality came late to me, after some horrendous experiences with school PE and childhood breathing problems. But I had always liked cycling and walking (and climbing things when I was a child). I got into yoga in my 30s, and in the last decade before my illness I had been learning various forms of dance. Cooking was also about non-intellectual activity and sensory pleasures and the joy of making. Singing likewise: there’s much joy in using one’s body to produce art with a community.
In hindsight, those non-intellectual things were the things that truly sustained my happiness. It’s those that I grieve for, surprisingly much more than for the fun of algorithms and maths and the satisfaction of puzzle-solving – although the flow feeling of being in the zone is pretty amazing, and I do miss that too.
My counsellor has helped me to feel much less achievement-driven, and I have hopes of further improvement. In some ways, being ill has actually helped my mental health by removing a lot of the pressure I put on myself. It’s perfectly OK to do nothing: I am sick. I do not have to judge myself or beat myself up for being lazy or whatever. I am learning to have some peace of mind.
Learning new ways to do old things
These things please me. I can feel smart and adaptable and still somehow myself.
So, speaking of movement, I still do some yoga. I’m not sure if I’ll be able to go back to classes ever, since most seem to be outside my good times of day. I tried out tai chi and found that quite soothing, and mostly within my capacity, but again the class times tended to be a bit awkward. I don’t rule it out. Maybe soon, actually – I have just discovered a short midday option.
I may not read much in the way of intellectual writings any more, but I do enjoy watching documentaries – reading science or archaeology or what have you is often too mentally fatiguing, and my eyes get tired focussing for too long. But there’s a huge amount on YouTube. I can still read, but lighter books and for shorter spells than I used to.
I can’t any longer cook curries and cassoulet from scratch, or bounce out of bed and bake a batch of muffins before breakfast. Hell, even boiling a pot of pasta is too hard, what with all the standing up. But I am getting significantly better at slow cooking and microwave cooking. I’m also making good use of convenience foods, whether it’s pre-cut veggies or zhuzhing up (how DO you spell that?) a jar or pack of something premade. I also enjoy making interesting combination out of my everyday food and drink. Successful experiments include the rooibos, rose and strawberry gum blend tea; the sour cherry, coconut and wattleseed sugar porridge; and the butter, honey and walnut sandwich.
In terms of travel, active and adventure travel are Right Out. I need a heap of comfortable rest time. I have been on a couple of cruises and would like to do more – not something I ever imagined myself doing. But effectively, you stay in one spot and the scenery moves past you. Not such a bad option for the ill. Just don’t pick the party cruises. You settle into a cabin and don’t have to pack up and move on all the time. Meals are all laid on. So far, I have been on two knitting cruises, with on-board classes and special outings to yarn and fibre related activities. I could be persuaded to do more, if only I had the money. The Rhine, the fjords of Norway, the Baltic, the Mekong, the Amazon… the world is still out there.
Learning New Things
I’ve always been a learner. The world is so full of such interesting things. This is partly why the brain fog is so distressing a symptom: it hits at my deepest self. I gave myself some serious exhaustion the other week just trying to configure my new tablet. No movement, still got PEM. Bugger. UNFAIR! And don’t get me started on the update to the WordPress editor. Where did all my categories go?Oh. Duh. What brainfog?
I have a new hobby: knitting.This has been a massive source of comfort for me. It can be meditative with the repetitive handwork – and totally mindless when that’s what you need. It can also be artistic with colour combinations or even pattern creation, and there’s the intellectual aspect of learning new techniques. It can often be sensually pleasing – the different textures and feels of good wool or luxury fibres, and the visual appeal of the various colour combinations. And just making things is satisfying. I donate hats and scarves to refugees, too, so I am doing some very small good in the world.
I’ve also been ever so slowly learning Japanese, but even a single word a day adds up over years. Will I ever get to use it? Who knows. Nevertheless, it pleases me that I know how to say things like dinosaur, paleontology, mathematics, syllogism, the planets, some of the elements and various other totally nerdy things that are not in the usual tourist phrasebooks.
I’ve toyed with new ideas of music, maybe learning blues piano or slide guitar, but that’s been harder to manage both emotionally and physically. It might have slipped your attention that I didn’t include any music in my examples of tiny joys. I wish I could, but I cannot. I still grieve hard and deeply at this loss. Maybe one day. And I have interest and materials for an assortment of new arts and crafts. Yeah, I may have bought them in a semi-manic state of bad drugs, but it could still be worth it one day.
It’s not easy being friends with a sick person. They begin by standing you up a lot. You can’t go places with them, or do the things you used to do together. The active person has to adapt to the sick person, because they can’t adapt to you – no matter how much they might like to. I do welcome visitors, especially those who know not to stay too long or expect too much. Make your own cup of tea! Or house-guests who can look after themselves and leave me plenty of quiet time, and maybe even cook dinner or bring me great treasures from the world outside.
I’ve lost friends, through various means from fading away to active dumping. Most of the faders I don’t resent, merely regret. They have busy lives, and adding in visiting the sick would be an added burden. If their lives allowed, I’d be happy to see many of them again. But some people have stuck with me, and that has been invaluable. Even those I only see once or twice a year are worth more than gold.
I’ve also found new friends, through common experiences and interests. I met some people through a course run by the local ME/CFS society, and I met some people through knitting meetups. I also went to some board game meetups and was starting to get to know a few people, but COVID put paid to that. Maybe that can resume for me some day.
Appreciating My Memories
Some people like to save up all their money for retirement and plan to go travelling then. I am so glad I was not one of them. If you are young, my advice is DO NOT DO THIS! Carpe diem. YOLO, dudes! I mean, don’t be stupid about it, but life is uncertain and you might not make it to retirement unscathed and ready to go full-on grey nomad. I have done a lot of things in my life, and these memories are a treasure.
It’s not just that I know I have actually lived, been places, done things, had experiences. Though this in itself is great – it’s good to have memories of the stars seen while camping out in the central Australian desert; or camping amid weird limestone formations in the western deserts of Egypt; or of watching seals on Antarctic icebergs; or of looking down on turquoise lakes in Tibet; or motorcycling narrow cliff roads in the Himalayas. I’ve visited every continent and dozens of countries, and lived in three. I’ve not had a boring life.
But even more important are the memories of being, appreciated as a competent adult, a fellow human being with interests and conversation and skills and a history. Being sick makes you dependent, as if you were a child again. And if your childhood includes a lot of bullying, ostracism and unpleasable adults, this can put you in a very bad head space. I’ve had flashbacks.
But I am NOT incompetent and unwanted. I’ve sung in every major concert hall in every state capital except Darwin – including the Sydney Opera House several times – and under the baton of some major conductors. I’ve created glorious music in a community that appreciated my contribution. Also, I’ve earned three degrees; I’ve taught social research methodology at university; I’ve been a restaurant reviewer for a newspaper; I’ve managed large genetic databases; I’ve done research using highly secured guarded medical data – and been praised by my bosses for good work. Obviously it wasn’t all perfect, nobody’s jobs or activities ever are, but on the whole I’ve done well and been appreciated.
For a while, I avoided thinking about this, as the loss was too fresh. But as I go on, it’s been more important for my mental health to remember these things. In a world that asks “what do you do?” and means your job, it can be hard to retain self-respect. But while sickness can take your present activity and your plans for the future away, it can never take away your past.