Life: drop the ball, keep playing, muster magic.

On Friday I dropped the ball.
I forgot to take my hydrocortisone around 4 o’clock in the afternoon and also any dose after that. This happens. There’s so much I have to keep track of during a day that I just forget. There’s always medicine to take and bodily assessments to make and correct -all day long!-  and I’ve got to plan ahead a lot because things take time to take effect.

As each day is different, both in schedule and in how ill I am, there’s no fixed routine I can keep to. I have to tailor every day. The medicines I take I prefer to take in small doses through the day. Having a sensitive body and sensitive brain chemistry makes that this works better for me. Hydrocortisone and progesterone and magnesium and valerian are best dosed throughout the day instead of one big pill in the morning or at night. It’s a bit more work…

There’s also the added nuisance of remembering it’s time for medicine just when you’re sitting on the couch, deeply engaged in something interesting. While the medicine is in the kitchen.

Yeah, yeah, I’ll do it in a minute!

Somehow that minute never comes …

 pic by Odan Jaeger

So no hydrocortisone on Friday afternoon and I didn’t notice. I still had my dinner: fatty chicken soup and fatty chocolate ganache and lots of fatty whipped cream. And then I didn’t lay down after dinner… because we were all bundled up on the couch together, watching videos (dh and me), knitting (me) and snoring (the cats).

By 8 o’clock I grew nauseous. I realized what had happened but as it was a bit too late at night to take cortisol. So I started to sit upright and took npc. Later on I took a bit of diluted vinegar. While standing I remembered my body had been wanting to visit the bathroom for a while now, nr2. So I went to the toilet and had an unpleasant time there. I returned to the couch still nauseous and now topped with a vegetative reaction to the bowel movement. Was it a vaso vegal reaction? It was some kind of primal body reaction anyway: the one where you get either very hot or very cold, with clammy hands, shivering all over and you feel utterly rubbish.

Everybody got kicked off the couch so I could lay down. I took some hydrocortisone which is always nearby (by now it was nearing half past 8 at night, but it was needed).

 pic by Chris van der Berg

I remained on the couch, covered in wool.

I was cold and nauseous and miserable. And grateful to be in a horizontal position. After a while the cortisone was converted to cortisol in my body and I felt its effects. The reaction it provoked? I got extremely sleepy. There’s something to think about. Usually cortisol is an activating hormone. Unless it soothes the immune system.

I dragged myself upstairs and fell asleep. It was half past nine.

A small crisis, all because I forgot my dose.

 pic by Sebnem Imece


Of course it wasn’t over with one night’s sleep.

First of all, it wasn’t a night’s sleep. I slept from 21.30 until 2.30 hour. I woke up refreshed, in fact I was sure it was 6 o’clock in the morning or something because I felt so good and that’s why I didn’t resist waking up all the way. I wasn’t warm or cold either, just toasty. When I figured out what time it actually was I just laid there, waiting out the peak of excited neurotransmitters. I still felt a bit nauseous now and then. Could taste the ganache. Vowed to never eat again. Took some npc.

 pic by Esther Groen

My second sleep was from 5 till 8.30. From which I awoke very tired and groggy. It took a long, long time to arrive back into the world of the living. And lots of cortisol.

All of Saturday I had to carefully walk the fine line between too much and not enough. Take rest, take medicines, pace myself, have a bit of food, leave half of it, start a project, stall it, take supplements, take rest.

I felt utterly dumb for forgetting the afternoon doses the day before and bringing such a wreck upon myself. Now I was paying for it. I had to be really careful the whole day and the illustrating I was looking so much forward too suffered from it and was hard to do.

I felt dumb.

 pic by Judy Roberson

I felt so very dumb.

But later, that evening, I started to feel proud instead.

 pic by Sias van Schalkwyk

Yes, proud.

Because each and every day I do all the things mostly right. I eat the right foods, I make sure I have the right foods prepared, I plan things, I have clothes to wear, wear said clothes, brush teeth, take my medicines, keep my body warm, have an interest in friends, think onteresting things. When I was very ill I messed up on various of these elements, causing bodily or mental panics.

Nowadays there’s seldom a time anymore when there’s a panic.

There used to be panics because suddenly there was no food in the fridge or no supplements or I’d run out of important medicines or left them in the city or had no clean clothes or forgot to turn on the central heating or I didn’t shield myself from a glucose or salt deficiency. Those were daily battles. Nowadays they hardly ever occur and when they do they’re usually a buikd up of three things that go wrong.

Last time I messed up was around Sept.14th, when I ate too much weird cheese and bread and busted my kidneys while my adrenals were already out of commission which I hadn’t noticed and entertained too much visitors without taking the proper rests.

All other days I’m doing things right.

All day. Every day.

I can be proud. I am proud. I am doing this thing!

Every day, I am doing this thing well!

 pic by Andreas Krappweis


Of course it’s a shame I dropped the ball on Friday though. It’ll have repercussions for the whole of next week and the Christmas week after that and the week beyond. Which is a shame because I have things planned. Fun things.

I may have to reconsider my plans… Here’s how my calendar looks:


Today Dec 15
Today, Sunday, I already pushed the envelope and drove an hour to a wool party (where I presented the illustrated notebooks and got praise!). And back. I was delighted to see my friends again!

Tomorrow, I’m resting. And preparing dinner for the rest of the week.

Tuesday morning is spinning group. That’s half an hour’s drive. And back.

Wednesday I’m driving myself and the cat to Den Bosch. Somehow a x-mas tree has to appear magically in the house that day too.

Thursday I’m traveling to Amsterdam for a mumbo jumbo medical procedure I have calculated expectations of (tell you more about it when I know results). One hour travel to. And fro.

Friday I’m resting. And baking cookies. Probably should take a showe. And figure out new clothes to wear.

pic by Michael Faes

Saturday my friend Pippi comes for a visit. She likes cookies. And x-mas tree. (which better be magically decorated by then too)

Sunday I’m resting. And baking cookies. What am I eating for dinner these days?

pic by Michael Faes

Monday my friend Tinkerbell comes for a visit! She likes cats. My cookies are shaped like cats, it’ll be great. (I’d love to illustrate a notebook with a cat for her as a present, we always exchange presents. When will I have time?)

Tuesday I’m resting. And baking cookies. Also x-mas roast dinner will happen that day, magically I presume.

 pic by Michael Faes

Wednesday we’ll travel to Utrecht to spend x-mas with my family. I promised cookies. (one hour travel… and also back)

Thursday we’ll travel to the south to spend time with other family. There should be cookies. And ganache these should be prepared on a previous day. The travel will be 35 minutes one way by car, fairly stress free for me.

Friday and Saturday I’ll be resting. What’s for dinner the coming week?

Sunday I’ll get my period.

Monday we’ll travel to the cabin to spare the cats New Year’s Eve fireworks. And ourselves too. We’ll have to visit the baker in town to get ‘oliebollen’.

 oliebollen, by BarisArt

Tuesday I’m resting. In bed by nine.

it’s a new year! We’ll be traveling back to the city.

 pic by Adyna

Thursday my friend M. will visit. I imagine she loves cat cookies!

Friday I’m resting.

Saturday I’m visiting a friend for her birthday. (gotta organize a present)

Sunday the 5th of January…. I’ll be resting. And probably clearing the rest of January’s calendar.

hmmmmmm. This is not a very smart calendar. It looked good last week, when I was up and running (on lovely cortisol and estrogens). But now that I’ve dropped the ball and need to recuperate AND visited the knitters party today I know I’m in for trouble.

 pic by Mike Wilkinson

If I could just switch faster between ACTION! and RRrrrrrressssst.

The getting-into-action-bit I’ve got covered. It’s my natural inclination. But the getting-into-rest-bit….not so much.

I wonder….. could I do a bit of an experiment the next couple of weeks? Up the rest-bit? Actively pursue it?

Usually when I come back from some activity, such as a visit or the spinning group, I relax like most people do: surf the computer, watch some tv, have a drink (herbal tea), pet the cat, read amusing newspaper ( Some low cerebral activity. Just marinate in life, so to say.

It’s fine. It’s relaxing. But it doesn’t get my body into that parasympathetic state of Resting and Digesting. (And healing)

What if I pursue this state actively? What if I see “relaxing” as:

  • actual lying down (a.k.a. move butt and stuff to couch or bed)
  • do something non taxing to the mind (a.k.a. no envigorating movies, news or surfing. Stick to knitting -chose pattern you have to watch your hands with and wear your reading glasses- or illustrating (yay!) or writing or reading (health research or a novel) or sewing or bend those pins you’ve been meaning to do for a year now for those two dear women
  • ease up on the body (a.k.a. preserve digestion energy by eating small portions of good food (a.k.a. stocks, no more sjoko-kerstmannen) and lie down after one hour (my body needs it! do it!)
  • spend time in Faraday tent (you lazy bastard, you get distracted by the higher energy you have in the city and think you don’t need to but you do. Get your butt in that tent!)
  • Use progesterone liberaly. Already symptoms are showing of shortage and you need more now that adrenals are down.


This requires quite a strict regimen for the next couple of weeks.

And some preparations (have materials and designs for leisure projects prepared; locate the clocks in the house and learn to glance upon them and noting at what time from now it’s time to lay down; make sure the right foods are in the house or know where to get them.)

But I think it’s the only way I am going to pull of the scheme I’ve planned and enjoy it too. There’s nothing on my calendar I’m prepared to cancel. Luckily I know that all visitors to my house don’t batt an eye when I flop down on the couch or when my eyes glaze over. I do hate when it happens though, it robs me of fully enjoying the moment. But half a moment is still better than no moment.

So there it is. A plan and intentions. And I know where my weaknesses lie. I know I’ll get buzzing when I get to the city. No way am I letting that get in the way of taking the necessary rests. Especially when I don’t feel tired, I need to keep the scheduled rests. Twice a day I need to see the couch up close.  It’s a lie, the wiredness!

PS. don’t tell the funny birds that I just blew my planned bedtime writing this post. Good intentions always start best tomorrow.

 pic by Susan Fernbach


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