A Day in the Life, with Percentages

This is normal.

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.

Summing Up

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.

The Vexes of Vaxes

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.

The Best Things About ME/CFS

Depend upon it, sir, when a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully.

Samuel Johnson

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
  • Finding friendship
  • 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.

There’s so many memes out there that are so relatable. So very many memes. I mean, sometimes you have to laugh so you don’t cry.

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)

Wait, actually I DO have all day. I just can’t really meditate much, as the emotions get bad. My counsellor advises against most kinds.

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.

Finding Friendship

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.

It’s That Day Again: May 12

I made a poster for the campaign. Also apparently missing: any sense of style.

I’m participating in the awareness campaign from my couch, and I supplied a little story for the organisers to use. It’s over the 200 words they requested, and they were able to pick and choose, so it may not have made it into the press release in this form, or even any form. But here it is for you.

In 2011, I was happy and active. I was in my dream job, as a statistical programmer working in public health, doing techy things for good. I was having singing lessons, singing in choir, and doing dance and yoga and going for regular long walks. I’d recently come back from a trip motorcycling around Turkey when I came down with some respiratory illness – and I never came back up again.

It took three years and many specialist visits – expensive and with long wait times – to rule everything out. I saw several cardiologists, respiratory specialists, an infectious disease specialist, sleep therapist, a rheumatologist and even a nephrologist and urologist as my GP valiantly battled to track down even the tiniest anomaly in my blood work. All to no avail, as I became sicker and sicker. I was constantly exhausted, with fatigue so deep I sometimes could not bring myself to lift a nearby glass of water when I was thirsty.

A couple of the specialists were very dismissive: it was deconditioning from the illness, it was “conversion disorder” (ie, hysteria), I was just fat, I needed to exercise. And well, I did try. And I got worse and worse. I did a reconditioning class with cardiac patients, and there’s nothing like being out-walked by an 85 year old in recovery from a triple bypass to let you know how sick you are.

The most important thing that helped me was a class run by the ME/CFS society, in which I met fellow sufferers and learned about pacing. It didn’t help me recover, but it did help me to lead a better life through acceptance of my limitations.

So that was my short story. I also got interviewed on the phone by a City News writer and got myself into print. You can read that story here if you can’t find one at your local Canberra supermarket freebie news bin.

It’s That Month Again

This blue ribbon does not mean you’re a winner.

It’s May, so that means ME/CFS awareness month. Somewhere embedded in there is ME/CFS awareness week and ME/CFS awareness day (May 12 but sometimes events get moved to nearby days). The official colour is blue; the official hashtag is #MillionsMissing – that’s for the specific event, otherwise it’s just #mecfs and similar. Whatever. I am planning to write more this month because, well, I feel obligated. I have been planning these out, which is partly why I had no post in April.

Let’s start with a video. You don’t have to watch it if you don’t want to.

In case you don’t feel like watching, the things are

  1. Invisible illness, people not recognising that you are ill
  2. Long time to diagnosis, not knowing what’s going on with you
  3. Being dismissed by doctors, whether by denial or helplessness
  4. Friends and family not understanding
  5. Guilt – blaming yourself for being sick, and for letting people down.
  6. People who think it’s all in your head.
  7. Not knowing how to recover, trying all the advice, getting confused

To which I will add:
8. People who are convinced that they have The Cure and will share it with you. Sometimes it’s for large amounts of money – like we even have that, after being forced to quit our jobs. And sometimes it’s because they’re evangelists for their personal approach and just will not accept that it’s not one size fits all.

There’s a lot of reasons why people may imagine they have The Cure. Sometimes chronic fatigue is not caused by ME, but by other conditions. Anemias, vitamin deficiencies, cancers, slow post viral recovery (hello long COVID maybe?), thyroid problems, allergies or sensitivities (mould is commonly mentioned), depression, sleep apnoea, and more, some of them quite treatable or even curable. By the way, the research seems to be showing that there are multiple kinds of ME/CFS – on a casual look it seems to be some are more gut based and some more neurological, so even if a cure for one kind of actual ME is found it still might not help everyone.

And I will also add:
9: BEING FUCKING SICK, DUH!!!

I mean really, this should be number one. This illness steals lives. I lost my job, my independence, my social life, and almost all my usual activities. Once I was a chorister, cook, cyclist, dancer, foodie, gardener, intellectual reader, motorcyclist, political activist, science nerd, singer, statistical programmer, traveller, walker, and more. Now I am not only physically too tired, but also mentally too tired.

How was that not even on the list? I mean, he’s only concentrating on the social aspects, and they are all true, but the title didn’t say so,and this is like number one, two, three and on to eleventy.

One could have suggested that some of the worst things are, like, some of the ACTUAL SYMPTOMS! Like the sleep deprivation, a well-known torture method. (Luckily I seem to have this one mostly beaten at last, after almost a decade.) The constant head and muscle aches, perhaps, and the brain fog. The light and sound and smell sensitivities that can make going out to a bar or restaurant into a torment, even if you have the energy. Or the gut symptoms and stronger pain that many other people with ME/CFS have.

Or you might mention the astonishing depths of fatigue – have you ever felt thirsty but also too tired to pick up the glass of water that was right next to you? I have. I mean really, people, fatigue is not just being “a little bit tired”. It’s crushing. Like wading through concrete. I had to cut my hair because I was too tired to wash and brush it. I get exhausted standing at the kitchen bench chopping up a few veggies. I can’t walk around an entire supermarket and restrict any trip to an aisle or two – and I count myself lucky that I can do that much maybe once a week. Other people are totally housebound or even bedbound. If I just kept all seven of his “worst” things, but could lose the fatigue, my life would be a joy and a delight in comparison.

When the Bloke’s Away

…well, it could be, but coke is too sweet and ridiculously fizzy for me, and even if I were hosting craft friends this week, there’s no guarantee anyone would be crocheting.

Old joke is old, sorry. I do get this bizarre sense of freedom when the Bloke is away for a day, as if somehow I will be truly free to do whatever I want. Not so much coke and hookers, as maybe going out for a nice long fresh air walk, or going to see a movie or have cocktails at a nice bar. It’s utterly nonsensical. He is not in any way confining me, it’s my illness and that is going nowhere. I am not going to paint the town red with or without him, and given the choice I’d prefer with. He is my support and helper and carer as well as my very dear life partner. But my brain has this weird glitch. Maybe if you’re told often enough that your illness isn’t real you start believing it a little bit subconsciously?

Things I actually feel free to do when the Bloke is away, and also am actually capable of:

  • eat an eggplant-based meal for dinner
  • eat dinner at any random time of the evening
  • watch anime and historical costume drama in the evening

This wild freedom is balanced by the things I have to do for myself when the Bloke is away:

  • feed the cats twice a day
  • clean up any random cat barf or rat pieces (only one)
  • make the morning coffee, trying to remember not to make a full pot
  • get my second mug of coffee
  • take all my own meal dishes to the kitchen
  • box up and put away any meal leftovers in the fridge
  • fetch or take away things that I forgot to do last time I stood up
  • load the dishwasher
  • clean up any spillages or breakages (only a couple, not too bad)
  • run the dishwasher, and empty it
  • run the roomba, move it when it gets stuck, and empty it
  • get the mail in
  • get the laundry in after we’d had a dry day
  • answer the door for all packages, and any stray people
  • fill and fetch my water jug
  • set up my chair in the shower if I’m feeling too tired for standing
  • make the bed, if it’s got into a super tangled mess
  • go out and buy essential groceries
  • drive myself anywhere that I need to be
  • take out the rubbish
  • pick up my printouts (usually knitting patterns)

I do normally do all of these things some of the time, but never all of them all of the time when the Bloke is home. It’s significantly draining. At least I don’t need to cook. I made a big spag bol just before he left, and he made a big chicken curry, and there’s ready-meals in the freezer, so there are plenty of dinners for the week. Also Friday delivery leftovers. My plan is to rest as much as possible to enable self-care.

One small hitch in the plan is that we had a scheduled long power outage on Thursday. So I picked that day to go to the hospital for some tests – it’s for a study I volunteered for, not anything serious – so woohoo, chatting with strangers and lunch at the hospital cafe! Yay! One must take the thrill of novelty anywhere one can, these days.

Breakfast looked a bit harder. We have a gas burner stove, so I had the option to heat water for coffee if I didn’t feel up to visiting the local cafe that early. What I actually did was to grind the coffee before I went to bed. Next morning the power hadn’t gone so I was able to boil the kettle and pour most of the coffee into a thermos. And then, ha, there was no outage after all. They did say rain might cause rescheduling, and it rained overnight.

I quite enjoyed the hospital visit, chatting with Dr Richard about arterial elasticity and blood velocity and techy med stuff. Apparently my heart is still in excellent nick. But the hospital cafe looked quite unappealling, so I just grabbed a sandwich and a kombucha (Emma & Tom’s passionfruit, v. disappointing, no discernible passionfruit taste, stick with Remedy brand in future). I did get my panadol at the chemist there, so a small double dip. I still needed bread and milk so I stopped in at Ainslie IGA on the way home

MUCH more successful than lunch. Bread and milk achieved, plus they had raspberries on sale at 2 punnets for $8, and Italian & Sons tiramisu. Dinner was AWESOME: rare roast beef & muenster cheese & salad leaves on sourdough, raspberry tiramisu. However, I was so tired after the outing and the aftermath that I didn’t manage to put the wheelie bin out.

Three hours out – especially with a fair deal of walking in it – means that I’ve got nothing left. This makes things even worse, because I get brain foggy and have to get up and go back to the kitchen or bedroom for things I forgot. So I move even more often, which makes me even more tired, and I’m more likely to spill things and have to do clean up, which makes me even more tired. That did happen: I knocked my jug of water on the carpet & couch, so I had to go get towels to soak it up. At least it wasn’t anything too messy. Coke would have been bad 😉 The only mess was very confined; some spillage from cooking apricots in the microwave. I ignored that one and left it for the next day.

Well, that was the most notable day for exertion. The most fun day was Friday, when our regular visitors came for movie night. We watched the 2020 film of Emma, and ate excellent Thai food from Siam Twist – our favourite. Try the outstanding Massaman beef, and the Nam Tok grilled salmon! But it’s all good.

How did I do? I’ve been writing this on and off all week, so I wouldn’t forget anything. I survived, so that’s good. I had hoped to go to a knit group on Sunday but I had no energy. I didn’t run the roomba or get the wheelie-bin out. My exercise routine really fell over. But I kept myself fed, clean and mostly hydrated, and the kitchen is mostly tidy, so I’ll give it a “Meh, I coped”. VERY glad he will be back today, though.

Double Dipping FTW!

Triple dipping is good, too. Quadruple is really pushing it, but doable with rests. More is just a really bad idea.

What I’m referring to here is managing outings. Today is a good example: I had a dentist appointment, and also I needed to get my meds and to post off a parcel. Luckily for me, my local post office and chemist share premises, so I could drop off the scripts and the parcel in one trip. The plan was then to go to the dentist, treat myself to something after, and pick up the meds on the way home.

It kind of worked. Post office business & drop off the prescriptions, check. (That’s one)

Dentist, fine. I had some peaceful sitting in the waiting room with a book, and somewhat less peaceful lying in a chair having my teeth scrubbed, but at least I was off my feet. (Two down.)

The treat went a treat! The Lyneham second hand bookshop had a dollar sale out the front, and I spotted a nice looking mystery set in 1886 Istanbul, so very little time standing and browsing. Yay! Lunch out seemed plausible, so I stopped at the Front, and had an amazing cured salmon salad and an iced latte and some more rest time with my new book. I’m enjoying it so far – author Jenny White is a scholar who knows her stuff. Also the lunch was both beautiful and delicious – so beautiful that I took a picture. A real success here. It’s actually the first time I’ve been to the Front since they renovated it and gave it a soul-ectomy. No more funky old lounges and mismatched crockery and bohemian hipsters. It’s kind of sad that it got so boring, but at least the coffee and food are good. (Three. Watch out now.)

I pass the Lyneham IGA on my way back to the car, and dropped in remembering we needed a couple of things. And as always I bought a few more than I’d intended. This IGA stocks those fantastically good sausages from Country Pride, which is also just across the way in the same set of shops. They’ve now branched out into rissoles. I’ve never been a rissole eater, but I do trust Country Pride so I got some to try out tomorrow. And a few other bits and pieces that we needed. (Four. And there was walking, I am seriously exhausted now.)

So picking up the meds would have made it five. That’s clearly a bit much, but at least brief, and there’s awaiting chair. I thought it would be OK, and then I could go home and collapse for the rest of the day. The Bloke is cooking tonight so no need to save that last spoon. It didn’t work out, though, since all the parking was taken. I’ll have to go back for them some other time.

And that’s how outings and errands work. I always try to double dip, to use my limited energy to the best within reason. The physio and the bakery. The chemist and the Filipino cake shop. Lunch and a few groceries. It’s always tempting to overdo it, but I have learned much about pacing over the last almost-decade. Social activity and physical activity are the most tiring; sitting quietly alone with a meal is minimal. Loud noise will make it worse. So will pain, as I learned from my torn calf muscle recently. Even if I’m not using my legs, being even in mild pain reduces the amount of sitting and socialising that I can do.

After today I won’t be leaving the house again for a while. I will be exhausted tomorrow but I hope with no PEM. I’ll have some visitors at home on Thursday and Friday, and with enough rest I may be up for another outing by Sunday. I’ve been missing the Tradies Sunday knit group since having to go to the physio, but it couldn’t be helped. Maximising the fun and achievement while minimising the effort is a complicated game.

Habits and resolutions and such

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

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

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

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

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

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

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

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

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

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

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

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


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

This is not the Bloke



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

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

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

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

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

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

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

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


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


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


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


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


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

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

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


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


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


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


Pyjamas: OMG I have NEVER been so fashion forward!


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


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


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


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


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

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

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

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


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

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

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


Snippety Snippety Snip

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

Things that have made me tired and short of breath recently

Showers, every time, of course.

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

Standing up and peeling an orange.

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

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

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

Sitting at a table and wrapping a couple of parcels.

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

Weird Shit

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

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

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

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

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

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

Other Stuff

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

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