no pressure…

Old Town cardi is back at the top of the back panel:

I’ll just start knitting on it again. No pressure.

I wouldn’t mind a bit more pressure though. Adrenal Insufficiency has left me with permanent low blood pressure and last week it got extremely low, due to the tropical temperatures we had in the Netherlands.

Vianen, 35 graden #weer #hetweer #rtweer #record pic by Julian Lim

The heat made my blood vessels dilate and as a result my blood pressure (BP) dropped below functionality and I’ve spend two mornings in bed, unable to think or move for hours. My usual supplement of hydrocortison and salt water did not have any effect (apart from preventing me getting worse).

Hedge in bed pic by Tomasz Stasiuk

It’s very weird, not being able to think, to speak. I was slurring words. Didn’t find the right words and didn’t mind anyway. I only wanted to sleep. But it wasn’t sleep. It was… something else. Where you just… exist? But not consciously. You just lay there. Not even breathing consciously, just letting the parasympathetic nervous system run things, I guess. I did think a few things but they were slow and dream like and not very coherent nor interesting.

Just being. Not even in a profound way.

Old Friend Guarding Home pic by Scott Johnson

I’ve been like this before, a few years back, when I was really really ill. Then too I could not get out of bed in the morning. Couldn’t even lift my head. Couldn’t think, couldn’t talk. Each morning my husband had to put something salty in my mouth before I could lift my head. The thing was: he usually woke up before me and would be down stairs, sipping coffee. So I had to summon him to help me but I couldn’t call him. Each day it would take all the concentration and will power I had to initiate the action to knock on the side of my night stand to make some sound and “call” him that way. He’d hear and come up and ask what I needed and I’d lay there, trying to make him read my mind and feed me some of the salty cracker that was on my night stand. This went on for about 2 years I think.

That was really bad hypotension. Or maybe just adrenal problems. And we let it go on for too long. But we were surviving back then, we weren’t thinking straight, we didn’t know what it was.
I should have told my doctor sooner. I thought I had described it to him but apparently I hadn’t, not really. I remember that when I eventually did, my GP got pale and stared at me and wrote out a prescription for cortisol without breaking eye contact. It was surreal.
It made me too scared to ask how bad these episodes had been.

Doctor pic by Jeff Eaton

Nowaways I cruise at a BP of 90 over 60 with a heart rate of 60 bpm when resting and 80 when standing. The daily doses of hydrocortison (= cortisol) insure my body is up and running again -or at least sitting and knitting- and there’s enough to get me through the day 24/7. I no longer have those weird zombie spells.

"Don't worry about those cream-filled idiots. At least you have a brain." pic by Josh Wedin

A blood pressure of 90/60 is still too low for me, it’s hypotension. It should be 120/100 at least. One of the troubles is there’s not enough pressure to push nutrients and sugar and oxygen into tissues, muscles and brains. Because that’s what blood pressure is for. It’s not for keeping your arteries nice and round.

This failing to deliver goods to important places results in malnutrition of organs, in weakness in muscles (including bad coordination) and mental symptoms where you cannot think properly. I still struggle to notice when these things present themselves, due to the brain fog it brings. Also I have no solution for this low BP, I cannot get it up. I take salt by the bucket, straight out of the shaker and with everything I drink. I drink a lot. And I once experimented with taking higher doses of cortisol but that didn’t raise it either.

Day 19 pic by Pascal

Last week with the hot weather temperatures rose to 35 degrees. I didn’t recognize fast enough how vulnerable I am too heat. I had two of “those mornings” again. You just have to lay there. There’s nothing else you can do. Head full of cotton fluff. So tired, so tired. Clammy skin. All you want to do is sleep. But it’s not sleep, it’s existing, without time or plan.

Blood pressure monitor pic of blood measure by Tunstall

It would get better around noon, as the natural cortisol levels of the circadian rhythm lessen. I’d get out of bed and write on the legal report I have to submit next week. I’d forget about the morning, too busy to catch up on the day. After two days I recognized that this was not good. We tried to take my blood pressure but it took a whole other day for me to remember where the meter was (in my night stand, where it has always been but I was sure I put it somewhere else and I didn’t even check. That’s how messed up the brain gets.)

Anyway, on the day it got cooler I found my wits again and was able to sort things out. I got out of bed, got dressed, found the meter, BP was 79 over 57 with a heart rate of 57 beats per minute. Ridiculously low. But I was functioning.

Got to the (new) doctor, asked for a mineral corticosteroid called Florinef (= fludrocortison) which solely busies itself with raising blood pressure. Got it. Felt better.
Then felt worse. Because one of its side effects may be depression.
Oh please! Give me a break!

The kettle just won't shut up! pic by Benjamin Lehman

Today I ruled out it is anything else apart from the Florinef making me sad. That it’s not from something I ate (vanillin, vanilla essence) or a shortage of Progesteron or Zinc or vit D or Lithium (the mineral, not the drug) or Choline. I have a whole array of things that can cause acute depression in me and it’s driving me mad!
I established that yes, it is indeed the Florinef causing my depressive mood. Well, that’s new.

Luckily my husband read online that this may be caused because Florinef uses up a lot of the Kalium which is supposed to be in balance with Natrium (= Sodium = table salt) to keep your BP up. And also the brain chemistry of ridiculously sensitive people.
I ate half a banana (chuck full of Kalium) and the doom and weepiness seemed to lessen.

Tomorrow I try again. Take Florinef, see if depressive feelings rear again, see if I can curb them with half a banana. So I can be happy (or just merely OK) and do some knitting or other stuff.

I’m sorry. I don’t usually post these things here, I hope, with al this grievance and so little knitting. But it’s on my mind now and it colours my every day and it explains why there are few knitting blog posts these days.
I’m so tired of this shite. All these variables and this sensitive, sensitive system I’m working with.

I wouldn’t mind one bit to be a robust extrovert for a month and just enjoy things!

happy banana pic by ingridf

(Luckily I match my list of chemical imbalance culprits with a list of tactics to get rid of them. But today I feel the need to gripe about it all and couldn’t keep it away from the blog. Sorry about that.)

PS I did do some knitterly things today. I knit four rows on the Old Town cardi and then I saw I’d better go down a needle. My gauge has changed since I knitted the top of the back panel. So at the moment I’m in the middle of trying to pick up stitches four rows below where I am but this is fiddly and needs a bit more brain power than I can muster in my free time.

Instead I spend an hour making a new ravatar for Tour de Fleece, carefully choosing the right shade of pink for the cat’s wig:

Tour de Fleece starts in week. Sshh! I haven’t finished that blue Shetland I wanted to finish before. Haven’t carded the Swifter fleece I want to spin so bad during TdF either! And also… before TdF starts that court document I’m writing must be submitted. Oh man… the heat is on.

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6 thoughts on “no pressure…

  1. Weird to “like” a post like this – it means “I hear you,” more than anything else. So sorry you struggle with low blood pressure, I really wasn’t aware it could give such symptoms. Do they be sorry for sharing how you’re doing. You only drop hints, and even here, where you’ve laid it all out, your focus is positive. It’s all on what you can do to manage this crap and the good things you manage to do. No “woe is me” going on. I wish you good health, that you’ll suddenly stumble across something that helps loads and push you towards healing. Have you had a look at what you can do with your microbiota, and the effect this can have? Have to ask, as it’s very much on my mind… 🙄
    Enjoy your knitting and everything else, just hope you have the energy to get it all done.

    • Thank you! Such nice words.
      I’ve only just started looking into microbiotica but don’t know much about it yet. I’m on low fibre and Fodmap diet which influences this. Am taking some biotica strand called “Juvenis” but wasn’t sure whether to continue.

      • (I fell asleep in the tub, which was rather lovely actually, so now I need to cool down a bit before bed. More time for WordPress! 😆)
        There’s a blog here on wp called CFS remission that I quite enjoy, even though I don’t have CFS. I have MS, but I think there are several similarities, especially with imbalances in the gut. It’s a blog I wholeheartedly recommend. For anyone, actually.

    • what a good blog is CFSremission.wordpress.com! Complete with DNA SNPs etc. I’ve been reading on it for hours, nodding and saying “yes! yes!”. Thanks 🙂

      I had my genome written out in 2014, with 23andme, and it showed why my blood levels of vit D and B12 looked good but I was still showing all the symptoms of shortages. Can’t use the stuff when your enzymes are double broken… homozygote for vit D receptors and MTR/MTRR.

      if you ever want to read more about my story it’s over on forums.risingphoenix.com under my name WoolPippi. Thanks for the tip and yay for bath tubs 🙂

  2. I´m so sorry to hear that you´re not doing well! Please don´t apologize for not only sharing your chipper moments, sometimes life is just not kind.
    I hope you´ll be feeling better soon, and that the side effects of the Florinef are only temporary.
    Good luck with the court documents, and enjoy your knitting!

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