Idle mind, idle hands.

I’m too ill to sit upright or even think. It’s quite annoying.
No spinning today but I’m knitting away on Pumpkin Ale. WM Mauseschwanzchen, such a nice colour!

I’m knitting the left side panel now, I’m about to cast on for the pocket I think.

I’m also watching a fun Australian ’20’s female detective series. Miss Fisher’s Murder Mysteries. But I have to pause often because I lose the plot, all these white folk look so much the same, especially when they change clothes.
Except for the lead detective, she’s very distinguishable. And fun! Imagine a cross between Pippi Longstocking and Dame Joan Collins.

In the mean time there’re also a few new theories about “vague” chronic illnesses for me to consider. I find these very interesting but cannot get my brain cells lined up properly to do constructive thinking.

one is Fibromyalgia where now is proven that people with this have significant more nerve endings in their blood vessels.. ?? … I don’t remember. It was on my Facebook feed. And in Dutch.
It explains why they experience so much more pain than other, regular people.

second is ME as a infection of particularly the Nervus Vagus cells which are the very cells that signal the brain when a body wide response to ilness is required (fever, fatigue, the works. It’s known as the “Sickness Behaviour Response” and is needed when you need to stay in bed to battle a sickness.)
The theory is that the infection prompts this response because the wiring is attacked, not the whole body.
This theory explains why antibiotics can restore health in some people with ME instantly, before an infection can theoretically be cleared up. Because we’re talking nerves here, nerves and restoring their function.

Thirdly an infection of the endothelial cells which line all blood vessels and control dilation. Malfunctioning of these cells causes typical ME symptoms such as low blood pressure and whatnot.
This theory explain why drugs that promote blood flow give health to certain people with ME.

I myself am prone to seeing the body as an ecosystem, not unlike a coral reef. All kinds of critters live in the nooks and grannies. No: crannies.

 pic by Vincenzo Piazza

There’s all kinds of bacteria and viruses living about our bodies. We co-exist and there’s no reason to get all panicky about their existence within our body.

The immune system picks out the obvious offenders but that happens pretty much in an old Wild West habit where bad boys run and hide and the killer cells hunt them down. Remember that awesome little movie of that white bloodcell gunning for a lone bacterium?
That’s how they get them, one at the time.

Unless there’s a full invasion going on, then the whole body response is needed and the place is set afire (fever) to asphyxiate the culprits. With considerable damage to the existing furnishings but hey, the goal justifies the means.

Tonight I had 3 theories of ME/CFS floating in my mind, building upon this image:

  1. infection makes it literally impossible for the ecosystem to function normally. It’s overrun and bodily processes are severely hindered. Solution = eradicate the infection.
  2. infection induces the body wide Sickness Behaviour Response not because it’s a body wide infection but because it bugs the very wiring that tells the brain to engage in the body wide response. This could be via the Nervus Vagus, its cells infected by a particular invader and thus thinking the whole body is under attack. But also other sites. Solution = get rid of bugs OR block this signalling to the brain
  3. this constant battling against invaders tires and strains the system so much that the very stress of the situation hinders its function overall. Since the ecosystem cannot be rid of its occupants a solution could be to teach the system to learn to live with it without assigning stress to it. Probably live a less intense level of life then advertised.
    Solution: stress management aimed at the CNS and its brain components in particular. And learning to live with disappointment (a basic life skill I think)

but this morning I lost my train of thought and have not regained it yet. If I could just hammer out a clear picture and the interesting leads it’d provide!

The frustration of not being able to tires me extra… it’s very VERY annoying when the brain won’t function and the body is so overwhelmed it just wants to crawl away and deny the rest of the world.
But still there’s food that needs preparing. And eaten. Lillepoes who needs medications. A toilet that needs to be visited.
I just had a bit of a cry because I’ve been making custard since 10 o’clock this morning and have only managed to crack the eggs and pour the cream.

So this is how I spend my day today. Thinking in circles but not able to think at all.
Luckily the pattern for Pumpkin Ale cardi is clearly written, line by line, and I only have to follow instructions. Something beautiful is growing out of this chaos.

 pic by Mark Morcom

PS I hope this is not whining or fishing for your sympathy. It’s just how my day to day life is. I’m frustrated that everything is so mediocre when I give it my best. Getting D’s (or a 6 minus) is all I can hope for.
Doing laundry? forget some important items and give everything a nice shade of pink to boot. But at least things are clean. Better be thankful for that. Because things could have end up worse (forget the laundry’s in the machine, grow mold, flood the place).
That kind of thing. In every thing, all day. Getting D’s while giving it my full effort.
Like I said: hopefully not whining, not fishing, hopefully just illustrating.

my solutions for this kind of life is:
– minimal requirements regarding the logistics of daily life (all clothes match all other clothes; always have broth standing by; don’t panick over dust bunnies)
– surround yourself with lovely items. Handmades from friends; use luxury materials when knitting or lying on the couch; the best organic foods and supplements. Take time to pick up an item and admire it.
– mental hygiene. Don’t dwell on negative things; actively steer your thoughts towards positive things; avoid news channels and toxic people; allow for “lost time” such as leisurable surfing or just mindlessly petting the cat.
– be surprised often that the value of a life is not measured by economic output, by getting fame or by achieving things. Take note when life does have value: when you hold someone dear; when you experience beauty; as you add your own personal colour to the palette of human life just by being you.


One thought on “Idle mind, idle hands.

  1. Wat wordt je Pumpkin Ale mooi, zeg!
    En leuk, hè, Miss Fisher 🙂 ik moet ook nodig weer verder kijken!

    Ik heb het artikel over fybromyalgie voor je opgezocht:
    (ik wist nog dat Rachel het had geplaatst).

    Je theorieën klinken interessant – ik denk ook dat bij ME je lichaam bezig is met het vechten tegen een infectie (of in ieder geval iets als zodanig interpreteert). Ik ben benieuwd waar het naartoe gaat.

    Maar voor nu: dikke knuffel. Het is echt naar dat je lichaam je zo tegenhoudt.

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