Working again

I’m working again! But not really.

Since January I feel so much better and energetic that I’ve got actively into art again. I’m not ready to declare the project yet because these young saplings need a lot of protection before they’re viable. But I think about it all the time and go to sleep with many plans and visual images. That’s what I recognize from when I was full time working. Be it in art or in engineering.

The thing is: I cannot get myself to work every day. It’s the weirdest thing. Still so much time is needed for maintenance of the body, the house and the social life that not much energy is left for doing the thing I want to do most.
Houseworkpic by Pascal

This “getting healthier all the time” is not an easy task. So many days I’m back in the half-brain-state, where I have to just rest and pace and not push myself. So many other days I crumble under the pressure I put myself under and have to actively back off and take it easy. It’s really weird.

On other days other self chosen tasks take up my energy allotment. There’s again court documents to be written and I’ve taken it upon myself to do that. It gives great satisfaction to work on them a whole day and then send it in. But it’s not the thing I want to do the most in the world. Or is it? The thrill is real. The feeling of accomplishment. These emotions are confusing.

I feel I need to choose because I cannot do all the things. The art is suffering from the time I spend on the intellectual things but both give me great pleasure. And then there are all the things I do not do: the physical things such as kayaking, singing, dancing Flamenco or playing slap bass guitar.
Banksy in Boston: F̶O̶L̶L̶O̶W̶ ̶Y̶O̶U̶R̶ ̶D̶R̶E̶A̶M̶S̶ CANCELLED, Essex St, Chinatown, Boston pic by Chris Devers, art by Banksy

Of course I’m also terrified any time I don’t feel well, be it physical or mental. Terrified I’ve finally broken “the black box” and will be permanently ill. And if the present situation doesn’t terrify me I’ll think about the future and let that scare me silly. “How will I fare in an old people’s home? Surely they won’t cater to my diet or to my need for silence. I’ll die early!” “What if my husband dies? There’ll be so many things we didn’t get to do! And I won’t know how to command the Wifi and all the other hacks he installed in the house.”

I actively have to take in the mental reigns and put my mind onto other tracks. Live in the here. Live in the now. But it requires management energy, sigh. This on top of checking my mood all the time because it wanders so easily off track when not supplied with the right minerals. That continues to be a real nuisance. O man, imagine being pregnant or at puberty! When your mind is not your own. Awful.

So now I have a dial to tweak my sleep and guess what: I feel a failure every time I wake up after 4,5 hours again. If I manage to succeed (yes, with the 5-HTP and the FODMAP and the low-fibre and the stomach exercise AND THE HOUSE DUST) I don’t wake up after 4,5 hours. I wake up after 6.

sleeppic by masha krasnova-shabaeva

That’s my current reference for succes…. 6 hours of sleep. Still not enough to live a healthy life on. But not as wrecking as 4,5 hours. Still, with the good diet and other de-stressing measurements I now have a peaceful lying awake after those 4,5 hours. Not the tossing and turning and brain burning scheming social justice/world domination plans. It’s more of a 2 hours surfing imgur kind of insomnia. Then take some Hydrocortison and then get another 2 hours of restorative sleep. That too is different from before. But still, it makes me get out of bed at 10 instead of 6.30 and it steals my productive hours of the day.

Today I had a CT colon scan, a virtual colonoscopy. Hopefully it will show an anatomical reason for my lifelong waking up after 4,5 hours. The measurements I state above do not give me 100% result. Not even 50% anymore. Don’t know what’s going on. But I now feel like a failure almost every night, just because it’s no longer a total mystery. It’s a 85% mystery…

Doctor, please!pic by Edwin van Geelen, carving to be seen when floating on the canals of Utrecht.

I do know the colon-doctor rolled his eyes when I first came to him. It’s so out of the ordinary what I told him.

This attitude of his alters my approach of him next week. I’m no longer expecting him to announce an all-relieving “duh!” diagnosis. (I was hoping but now I’m no longer). I’ve set my aims at getting a copy of the scans, so I can look for myself whether there’s a steep bend in the colon (at the hepatic flexure) or perhaps a narrowing which can explain the symptoms. Perhaps take it to an expert in a different hospital. From the man himself I hope to learn a bit about how long people can go on eating low-fibre. I’m guessing one needs to shave off the villi in the small intestines every once in a while. Hoping to learn as much as possible from the man. Jotting down questions throughout the week, as they come to me (usually at night).

Well, that’s it. Just wanted to make a note that being in recovery from ME/CFS is not easy and is not a straight line. And it doesn’t make one happy per sé. Being happy requires quite a bit of work from me.

And I now have to deal with “normal people” stuff again such as: “there are only 24 hours in a day”.

24 hours neon Sign pic by Mike Mozart

I have now learned to prioritize the one thing I love to do most in the world. And I am very surprised to find I cannot do that thing every day. And there’s also sadness that one can choose only one thing to prioritize. I have to put so many other dreams aside. I have to be frank about them never coming to fruition and I need to shed some tears about this. There’s just no time nor energy. Weird world.

Little bit of blues while I continue to work my way up without any guarantees whatsoever:

Ladybird and the Blues!
pic by Danny Perez Photography

Don’t worry. Just focus on your happy dots and beautiful face markings, on the sunlight and on walking on a surface with all these funny little hairs. It’s a marvelous world, once you allow it to touch you instead of trying to command it.

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