Tag: ME/CFS

Spoon Theory

In the ME/CFS arena it’s said that we have eight spoons of energy per day. And we do careful calculations so we don’t go over the eight because, woe betide me, going over means a week or more of resting and recovery.

Pacing is never going over your eight spoons per day.

Habits and routines are godsent, for they save me from having to make decisions. And decisions come at 12 and a quarter per spoon, if it’s true that we functionally have energy for only a hundred of the pesky blighters per day.

Habits and routines mean I am on automatic, doing stuff without consciously realizing it. Which can often work well. Though not today.

Today (Wednesday 10th) I sorted Lego in the morning. Used up eighty percent of decision making energy just deciding little things like which drawer, which container? More or less unconsciously.

This all, I am assuming now (Thursday 11th) so that I wouldn’t have any energy to do my usual wishy-washy, will I—won’t I, and just go … see Centrelink, and in the usual way fail to solve the problem due to not thinking it through before starting out.

Which is exactly what happened. I had about a quarter of the paperwork needed, and the operator organized me another appointment tomorrow (Friday 12) for an in-depth thing when they will put me through the wringer.

Own fault, though my good excuse is that I was, it turned out, half sick. Today, Thursday 11, whole sick.

What Happened Instead …

What happened instead of me getting back on the same day is the usual ‘fall-down’ where I got back from my little jaunt in high spirits but with my ME-generated infirmities taking me down down down.

The sun through cloud

Seems like I got up too early, walked too far, stood around too long, and saved my bones from an awkward fall backward with a sturdy four year old in my arms.

I played horses, explorers, and clambered over a few bits of kindergarten playground equipment merely to prove to myself that I still could. Had fun.

You get the idea. I was flat as a tin lizard all weekend, able only to veg, read, and think about everything else.

I wanted to use a different image, which is stored on my laptop, and I am one-fingeredly typing this on my mobile. The twain meet only in one direction IE the mobile sends stuff to the laptop, never the other way round.

I know. I know. There’s the cloud! Never mind the cloud, it’ll just rain on my parade. The rain of passwords, pins, usernames, you name it, that I don’t have glued to my fingertips.

I steer up over under and around the cloud. There are more than ‘enty-soben’ steps between me and you and the cloud, and plus cooling complexes use too much energy.

Cheers all

Books …

Some people keep their piles at their bedside. I don’t sleep when I read in bed. This pile —

is beside me, on my couch. Plenty of paperwork under them as well, as you can probably see. My tax return for 2022-2023, for instance. Late already, it’s very forgettable.

Three of the books relate to Interpreting Dreams, the online course I’ve been studying. I’m halfway through but seem to be marking time, like I’m stuck on learning about shadows, and getting side-tracked on a bunch of other interesting stuff.

Ursula K LeGuin’s Tao Te Ching is a wonderful interpretation that I wouldn’t like to do without now. I have three bookmarks in it but most often I “make my daily march with the heavy baggage wagon”. From 26, Power of the Heavy.

Second from the bottom is my health journal wherein I keep track of what my Low Dose Naltrexone regime is doing to me. Good things, so far. Much less inflammation.

Then Sapiens: A brief history of mankind by Yuval Noah Harrari. Have to admit I’m past what’s most interesting to me which is humankind’s early history. I’m struggling through Roman times and the age of the empires.

Next up, is The Three Body Problem by Cixin Lui, famous Chinese SF author. Translated by Ken Liu. Unfortunately I started watching the TV series of the same name before the book arrived via snail mail. While the TV series is an easy and engrossing watch, the book is every bit as cryptic as has been said. Reading it, I keep trying to match events in the TV series.

Last in the pile, there’s Revenger by Alistair Reynolds. It’s just as rich and baroque as the first and second times I read it. It’s meaty with a thick silky gravy, excellent food for my SF hunger. And in addition I’m on the watch-out for the pirate captain’s magnificent orrery that influenced me to purchase the much paler Lego version. My next purchase will probably be the third installment of this trilogy.

Go Low, Go Slow …

The above motto is the only thing I’ve retained from the exercise program I invested in September 2022. It was a disaster.

Graded exerecise is one of the worst things I could’ve done for my ME/CFS. In my defence, I was under the impression I’d fully recovered.

So. The motto. I apply it to every kind of new thing I need to adapt to, and this week that is LDN (Low Dose Naltrexone)

Last week’s dose of 0.1 mg per day went down very well. I had a great week, suddenly with a lot more energy every day!

Which felt amazing! I haven’t that kind of energy for years! And so much less pain. That means a dive down of inflammation.

These have to be taken at night. And their so-called half life is 4-6 hours. Meaning most of their strength is gone by morning.

This week I’m taking 0.2 mgs a day, at night. First 2 days I had a fatigue slump at 11 AM that lasted till about 2PM. Third day the slump started esrlier. Today, I slumped at 10 PM and am still in it at 6.45 PM.

Tonight I’m going back to 0.1 mg … going low and going slow. We’ll see what happens

My sky pic is from Saturday 5PM, beautiful!

LDN!

Yes!

This is the day I celebrate.

Finally I get a go at LDN, prescribed by my new super GP (general pratitioner).

I’m excited and hopeful this medicine will decrease some of the symptoms of the ME/CFS that I have been living with for 27 years.

We’re starting extremely small, with 0.1 mg in the evening for seven days.

The doctor warned me I might have dreams. I said I love dreams. Grist for the mill of my Dream Interpretation course.

Note that I said ‘decrease’. There is no cure and I accept that. I

f I have less pain that will already be an improvement. Less fatigue would be a wonderful win. I don’t know yet what other effects I can expect. There will be journalling

Liminal How?

Liminal space how, people will be thinking.

Liminal in that I am in a between space and time.

Up to yesterday I lived in a medium-sized all-ages complex with 90 separate households. At least 20 young children, 5 infants, and numerous teenagers whom I mostly didn’t see. A handful of elders.

Lived there for three years through recovery from chemo, through the latter part of Covid restrictions, walking and exploring nearby parks. Stone’s Corner was almost next door. I walked East Ekebin Park. Moorhen Flats. Bentley’s. The Common. Bowie’s Flat Park and all the little green places in between.

Lived there through the extreme disappointment that chemo didn’t also fix my myalgic encephalomyelitis, and so two years after the end of the chemo, my ME flared. A disease that once you have it you will always have it. Can be kept semi-controlled only by extreme pacing, strict dieting, a shoal of supplements and not catching any viruses. Continuing to live the Covid life, in other words.

Lived there getting more and more involved in Lego. thebrickarchitect.com ; AFOL. MOC. brickresales.com.au ; bricklink.com ; rebrickable.com ; all became part of my language. I packed a large stack of boxes, two wide four high, with the whole of Reet’s Brick Town in there, plus all the remaining parts and separate builds. Lol, a lot of rebuilding to be done later, I suspect. Bosley & Co will be busy for months on the repairs.

The place between, as I mentioned yesterday, is Isla House. A compact room, with a large communal living space at the back of the house, kitchen dining facilities, and garden strip alongside the outdoor areas. Pity that the weather is still so hot. Summers are spinning out. I’m very tempted to go out and get some cuttings for my new place. I wonder if figs will grow from cuttings?

Below a pane in the bathroom for my frosted glass collection, looking out on the perimeter fence and the garden section.