happy egg spelunking in the new house

I did a thing! We moved into a new house three weeks ago and today I went into the crawling space and investigated why we have damp problems. It’s a space under the living quarters, it’s barely 50 cm high. I was so brave!

It’s a bit of a maze down there, with dividing walls that have little crawl through openings. Only a petite human like myself can go through these. My husband was waiting at the opening of the maze, hoping he didn’t have to go in and rescue me.
ri-keukenachter-haardfundering

There’s wet sand all along the west wall and also a “sink hole”. The coax cable goes through the wall here, we think it lets water in from the outside:
gevel-westkant-kuil-coaxkabel2

Floor beams look good. Dry:
vloerbalk

Lots of cobwebs and calcified “spider winter fest dresses”:
spinnehuid-calcified

The ground is dry save for 1 meter along the west wall and the north wall.

We’ve put a ventilator in to get rid of the damp air and hopefully the dampness in the sand. This will take a few weeks. We’ve asked a professional to come and have a look and probably install ventilation shafts in the outer walls. I sincerely hope the dampness hasn’t taken up residence in the woollen carpet that’s installed in the living quarters. We will be ventilating the living room a couple of times per day too.

This was quite a feat for me today. Now I’m also going out and walking to the bakery and get an oliebol. And I took a shower! I am working hard on getting rid of this stress and depression. But if things are too much I am fine with spending the rest of the day in bed. Spelunking and showering is enough results for one day.

To help with making myself smile I am wearing a new dress. Look how fun:


Wrong fabric (jersey, not sturdy enough to do the things I do. Like sitting on the pavement or spelunking. Also not lined so it clings to my underwear and is a bit thin.) Wrong shape for my body.
But who cares? Funny sunny side up robins!

We also bought some fun beautiful things for the new house. Hat stand and bird bath:
Hat stand is the only x-mas tree we have this year. I really didn’t have the energy to organize the tree and the decorating. It was a bit empty in our house, this week, because of that. But I spend the energy I did have on drawing a new catvent-calendar, with cats in the shapes of x-mas baubles and I had fun. So: good trade off.

Spend your little amount of energy on something you really like. Even though sitting down at the table to draw is no fun at all. This is a quirk of many illustrators, we’d rather think up excuses not to sit down and start, even though drawing is the thing we love most.

In the past few days, I have just sit down. Once I’m there there’s plenty of inspiration on that table. And I do like to draw.

Also bought two bird baths:


Photo’s by vogelbadjes.nl, the site of a nice man in the north of the country who likes stone, nature and birds, just like we do.

Lastly I think Zolpidem, known as Ambien to American friends, might interfere with Serotonin.

Most nights I take 2,5 mg of Zolpidem in the middle of the night, when my IBS wakes me up violently. The stress of the IBS gives me lots of excitatory neurotransmitters (serotonin and dopamine) which my faulty MAO A and MAO B enzymes fail to break down in a fashionable time. As a result of this I have a 1,5 hour insomnia and lay wide awake with a brain like a pin ball machine.

This happens every night and has caused my adrenals to give out, after a few decades. Seeing as they weren’t capable of providing me with anti-stress hormone cortisol to counter this stress and also counter the lack of Human Growth Hormone which is supposed to surge in your REM-sleep in the early hours of the morning. The REM-sleep I miss because I am awake. (Also they had to make up for a Progesteron shortage and counter Oestrogen dominance and endometriosis. Top it off with a virus, most likely Q-virus, and you get CFS/MEID which turns out to be a lot of mitochondrial hindrances and busted adrenals Addison’s disease.)

Anyway. I wake up somewhere between 2 and 4 o ‘clock in the morning (4.45 hours after I fall asleep.) I take 2,5 mg Zolpidem/Ambien and fall asleep for another 4 hours. I wake again in the morning and have no residual tiredness from the Zolpidem. It has left my system (thank you liver enzymes P450).

The thing is: Zolpidem acts on the GABA receptors. Or releases all the GABA that’s in storage. This causes the sleepiness within 10 minutes of taking a pill.

The thing the second is: don’t fuck with hormone receptors. They will react. They will get less sensitive. There will be other receptors reacting.

I haven’t figured it out yet but I suspect the GABA action of Zolpidem/Ambien causes effects in the serotonin-receptors. I have been very sad the last two weeks. Of course this could be many things. The moving house. Female hormones. Dark winter days.

But I didn’t take Zolpidem tonight and today I am happy again. My own self. The happy egg with high serotonin levels because I am homozygote for both enzymes that are supposed to break them down: MAO A and MAO B. (I have the opposite of what people with ADD have.)

Sleep well or be happy. I will alternate I think.

handling depression

Today I had to handle some serious depression. I’d like to talk about it, mainly to record what I did so I can do it again.

Thing is: I don’t want to spend the hour or more writing it up.

In shorthand:

About these thoughts about the world falling apart, life gloom, world doom, trying to find a right attitude towards all this misery = these are the wrong questions. You are going about it wrongly. These are not the legit problems neither is your approach the right one. (you are trying to sort something with logic and reason but it’s ultimately about the meaning of live and that’s not a subject founded in reason and logic).

Secondly: your brain chemistry is off. Don’t try to fix it with thought or will power. Human kind is optimistic, curious and playful in nature. If you are not these things than your brain chemicals are off. This needs to be remedied with chemistry. (Don’t feel guilty or weird about taking store bought neuro transmitters. You’re just supplementing a shortage.)

Hormones are neuro transmitters. These are powerful things. You also need the right minerals. Zinc, Lithium, Molybdenum, Selenium. Vitamin D. Buy them. Sun isn’t going to work.

In my case: blood pressure is too low and isn’t pushing stuff into your organs including the brain. Take salt. Take a cup of black tea. Lady gray with full fat cream.

Do this: actively shut down this train of thoughts. We will think about this another time, tomorrow, at 14.07 o’ clock to be precise. For 24 minutes. But not now.

Now. When you feel a bit better, chemically, there are some things about the state of the world that need to be discussed. Because your feel of doom and gloom is with merit.


Thing the first: word has always been on fire. We’ve always been threatened that the world would collapse in our life span. Cold war. Acid rain. Hydrogen bomb.

At each of these era’s the people living felt just as under threat as we do now from climate change, burning Amazon and loss of forest world wide etc. (Make no mistake: these ARE threats and we ARE at risk and it IS the eleventh hour.)

What I want to say is: people live under global threat for decades now. Those generations have found a way to cope, way back then. Perhaps we can learn from them. (It has something to do with choosing your scope of life. Impulses from outside that radius must be met with a hard skin.)

Thing the second: it’s been only 100 or 150 years that we concern ourselves with global trends and threats. Before that we just didn’t know. We knew a bit about European wars going on. The crusades. Coronations. But it was all “somewhere else” and quite detached from daily life.

Thing the third: This having an opinion about global things and how society should be is something from my generation and a bit around, 1920 – 1980. We grew up in the society that took care of you. We had social studies and history at school and learned to identify large patterns and we took lessons from history. Coupled with a sense that as a society we should stick together and take care of each other. Through government.

This has changed. Nowadays government won’t help you. You need to help yourself. Privatisation is an example. Profit models applied to care services are too.

The thing I want to say is: we as a generation have a handicapped point of view. We are biased towards old political habits. We have our eyes closed to how society is nowadays.

Thing the last: we are handicapped by our human ability to think in terms of cause and effect. We CAN predict the future. We can correctly predict that and how the world’s weather will grow more extreme. How things will be destroyed. Things on which our health and well being depends.

Science and logic are the systems of this ability. They are magnificent. They make our progress possible. Put man on the moon. Unravel galactic truths and mysteries.

However. We are easily lured in thinking that this cause-effect-way of looking at the world is also the correct way of experiencing time. It’s the way that chops up an hour in sixty minutes. A minute in seconds.

This is not the whole truth. Time also exists in another way. The way you know when you sleep. When you pet an animal. When you meditate. When you practise mindfulness. When you lie in the grass and close your eyes. When you are playing a videogame and are immersed.

Neither one of these two time-flows is the correct one. Neither one is better than the other. Both exist. Both are worthy.

OK. Hour is up.


Final thing: nobody blamed Bill Watterson for making comics. Nor Astrid Lindgren. Nobody said: “You should have saved the world instead of this scribbling you do.”

I am allowed also.

And as it is the thing I like best, this is a subject I can turn my attention to when I am in need of active tuning out thoughts of world gloom and doom.

But also, since it is difficult: it is also OK to just sit on the couch, knit a bit and binge watch series on TV. At least until I feel human again: optimistic, curious and playful.

Bergen: day on the couch

Well, today I crashed. Not adrenal crash, thank god, but I found myself crying over lunch at Godt Brød organic sandwich shop and knew I had to take the venicular up and lie down for the rest of the day. A pity because it was another sun filled day in Bergen and I had plans!

But lots of nice things happened over the last few days and here are some of them:

Beautiful textures on the mountain side of the roads.

A dodo for my dear friend The Woolly Dodo and a unicorn too!

The museum of Natural History just reopened after restaurations and we would have loved to visit there. It’s part of what made me cry.

I bought a funny cat illustrated mug for myself:

“password hint: favourite animal starting with a c.”

“I tried cow and calf and crab…. How about centaur?”

The table in the apartment I sat on yesterday and drew some art. Such a view!

I frogged a lot of Serra cardigan because I made some mistakes I’d rather not live with.

And finally: I liked what I saw in the mirror. By colour coordinating my wardrobe I can now just pick any dress shirt and hand knitted vest that’s in the closet and they all go together. With wrist warmers too. And skirt.

I save time and (mental) energy by this. No time wasted on what to wear. My condition, Adrenal Insufficiency, comes with the weird symptom that I now have trouble making choices. I’m fine with deciding, since decisions are lead by pros and cons. But a choice is a choice between two options of similar value, just different content. And somehow I have trouble navigating choices.

(I go with “left” now, mostly.)

This wardrobe trick really works for me and I’ve made all these sympathetic shirts and vests and they are so fun to wear and comfortable too. I am really content with how this plan works out. I felt very nice wearing this combination today, even if it was just in the apartment. Felt like an urban illustrator 😊

only one day per week is for drawing

alright.

Inktober day 1: “ring”
1ring

Inktober is here and I love doing that and just draw every day. Turns out I can’t. Today it’s the 7th of October and I’ve been feeling bad and inadequate all week for having only drawn day 1 and not draw on any of the next days. It’s what Inktober is about, after all: getting in the habit of drawing frequently. Every day preferably.

Turns out I can not draw every week.

Tuesdays are for ceramics.
Wednesdays are for sewing (lessons).
One day I must stay in bed and not want to do anything.
One day per week I have a meeting out of townm “far” away. It’s usually a council meeting about manure plants or biomass plants; last week it was the annual ceramics fair and yesterday it was a textile workshop at the national textile museum. These meetings are important.
One other day I’ll have a useful appointment close by or at home. It could be the dentist; a moving company coming by to make an offer; the builder who explains the plans for next door.
One day I like to see a friend.
That leaves one day for something my heart desires such as drawing.

On any day I must put in the effort to get out of bed. To get dressed. To organize food. To do the minimum of house chores. To rest. And to calm down in the evening so I can go to sleep.
On the days without appointments this leaves, when done right, about 45 minutes to do something I want. Twice a day if I’m lucky and have had a non-eventful week otherwise.

I’m conceding that I have not healed to the level of a normal healthy person… that I have a chronic illness and limited energy. I have one day per week to draw. Today was that day. I did not draw on my cat-art-business-plan-thingy but I did draw a few more Inktober drawings:
Day 2 “Mindless”:

Mike the headless chicken. Lived for months after getting his head chopped off.
Day 3 “Bait”

Day 5 “Build”

Day 6 “Husky”

I had fun. I love to draw.

Every time I draw it gives me such enjoyment. I have a hard time getting started (really! I have to circumnavigate procrastination while there are so many other things I could do) but once I’m going I’m going. Today, these are all just warming up drawings. Once they’re done I’m ready (and eager!) to do the real stuff. The cat stuf. But by then it’s been 45 minutes and I’m tired and I need to take a break. Which always last an hour if not more.

If I’m lucky I can then return to drawing. Today I did some sewing instead (still working on that August quilt. That I was going to start and finish in …. August.)

But now I know. I have one day per week for drawing. No use feeling bad about the other days. I still get a lot done those other days. I’m not keeling over, even though there’s a lot of pressure such as the heat wave, the stress of the court procedures and those darned neighbours that have their builders cause a ruckus for whole days on end (days when I have to retreat to the cabin because I cannot escape Fight or Flight when the whole house vibrates) Any drawing or preparations I get squeezed into those days is a bonus.

I feel more calm now, with this knowledge. Even if it means my cunning arty business plans are even flimsier than I thought.

I will also take in to account that I get a lot of drawing (or sketching) done when I’m out of the house and in a city, in a café or library. Do more of that. Bring sketch book everywhere.

moving house, naming priorities

This is my house, we’re putting it on the market next week:
Brede-Haven-Panorama-Full
It’s a marvelous house! Historic, at a canal in the historic city of ‘s Hertogenbosch.

Lots of pictures at the end of this post.

One month ago we were having a talk, just checking with each other about how are you doing, how will we be doing the next five years, are there things in the running of the house hold we should change. And out of the blue my husband says that, actually, he’s ready to move. Move away to the country side. He’s done with being the custodian of the inner city, of the history. He would like to live a more internal life for the next decade. Focus on living together in a house, in nature.

This suits me fine. I will miss the city life. I am fond of city spaces and how people use and experience the city. But I am more fond of my husband and I would like to explore this new adventure with him.

Health wise I have now found my optimum. I am not well but I am functioning well enough. It means I have to set priorities and living in a quiet house, somewhere in nature, will nurture me more than an interesting city that offers impulses all the time.

In the past four weeks we have decluttered the house and done all the chores we’ve been planning for years. My husband is delighted with the space and room we have found. As am I!

For the first time in my life I now tidy up after myself. And enjoy it.

Look, this is my attic studio:

You see my press in the far right. I am going to use it soon, it is at the top of my priority list.  Wood block reduction prints. And blind printing.

Being an artist is my top priority, it’s my “daily duty”. My other “daily duties” are fighting manure fermenting and biomass plants; co-running the house-hold; managing my health and social engagements.

These are the things that have a place in my every day life. House hold and health are every day things. They get combined with one of the other three. So each day I determine: is today a day for social fun, for making art or for fighting pollution? That’s how I start my day. Because of my health it is OK if this main theme doesn’t get my attention until 14 o’clock, because that’s about the time my body gets going.

Besides three things that have priority every day there are my hobbies. These are my past times. My sit-down-and-enjoy-the-moment-things. They are luxury and are meant to be enjoyed. They are particularly enjoyed in a nice decluttered room!

My hobbies are knitting; spinning; quilting; ceramics, sewing clothes and doodling. For ceramics and sewing lessons there are fixed days in the week, because I have lessons in a studio. The other hobbies I do as I feel like them. But I should do one every day. It makes me happy.

So that’s how I do my days now, and it fits my health profile.

Here are some more pictures of my house. Lots of winter pictures somehow…

View of the bedroom at the back, over the river Dommel:
achterzijde uitzicht oliemolensingel winter 2018

view from bedroom at the front, at a Winter night:brede haven straatverlichting 1e verdieping uitzicht

My cat wants something….lillepoes wil kattengras

Poekie enjoying early Spring in my back garden:poekie in de tuindeur

Spring 2019, I saw how the harbour at the front made light dance in my bedroom door:weerspiegeling gracht op de eerste verdieping

Poppies at my front door every year:
poppies bij de voordeur

View from my bed room at the front across the whole harbour towards the inner city of Den Bosch:winter kerstboom buren brede haven 2018

View straight ahead from the first floor bedroom at a Winter night:winteravond 2018 brede haven den bosch

Sun rise at an early Winter morning:zonsopkomst winterochtend brede haven 54

Full winter panorama of Brede Haven ‘s Hertogenbosch:
Brede-Haven-Panorama-Winter

determining the meaning of life: don’t use logic.

In the last decade I’ve learned that logic is not the right tool to evaluate (human) life with. Our knowledge of cause and effect does not render logic any authority for appraising life. Logic is just a tool for survival. Some specimens use talons to survive, some have whiskers, others have a brain. Probing the meaning of life with any one of these is legitimate. One is not a better tool of assessment than the other. Logic has as many shortcomings for judging life as do talons or whiskers.

One of those shortcomings is that logic uses premisses and those premisses are false for this particular task. Yet they are rarely examined when following a train of thought that leads to a desperate view on life.

Some of these premisses are: “What happens next is important.” “Human life is important.” “Human life is insignificant in the grant scheme of things.” “My life is important.” “My life is not important.” “Time is important.” “The flow of time is important.” “Time dictates something.” “Time waits for no one.” “Things should be different.”

These are all false because they have no place when trying to determine the meaning of life, when trying to attache a value to life. For example they prevent proper validating a gesture of care, of physically holding someone. And I hope we all agree that touching someone, holding someone, has a place when determining the value to human existence.
Another example: time flows different when you hold someone. When you cuddle your cat. When you’re about to fall asleep. When you meditate.

If you do accept any of these premisses and jump aboard that train of logic you’ll inevitably arrive at a dark destination. Not because the journey is wrong but because the depart was not fitting the quest and you shouldn’t bring a train to a daisy fight with kittens.

You should know that the very fact that you are trying to understand and overcome life and the world with your brain is a sign you are trying to regain control over something. It’s a defence against a feeling of powerlessness. That’s the real station of departure.

It is this knowledge that helps me actively step away from these trains of thoughts. I can’t ride them out, I know I can’t win on the logical plane. I should not examine the place of the court system in society. Not analyze the role of women in cultural interactions. Not ponder the way we humans organize our society. Destroy the natural world. Transport cattle and pigs on the roads. Dispose of our waste.

And although I cannot see the falseness of the premisses when I feel this way I have grown to trust that they are. Distraction is the solution I apply until I feel well again.

Haapsalu Blue Train 00252:
 Haapsalu Blue Train 00252pic by David Allen Wizardgold

you get the illness that humours the universe the most

OK, so I have this ME thing down now. I take my supplements, I take my hydrocortison, I take my rests, I wear my ear mufflers, I eat the fibre free FODMAP no oestrogens low tyramine diet and I take my daily walks to get the intestines moving and clear my brain chemistry. I have a life again! I’m not thinking about my body all the time, I’m thinking and doing other things. :)

Now guess who got bursitis of the hips?

No walking, sitting or using stairs for me.

Guess who lives in a house which has every room on another level starting with the two living rooms having a 1.20 m height difference between them and a kitchen that’s below ground level? Guess whose art studio is in the attic? Guess whose sewing room is somewhere half way?

Guess who now cannot attend events and knitter parties specifically chosen this year to celebrate recovery and getting back a life? I cannot get there because I can hardly sit in a car or train.

OK new game.

Guess who started to see double when she spend Summer 2014 resting on her back for ME with her first iPad about 30 cm from her face?

Guess whose orthoptist then told her it couldn’t possibly be caused by having your iPad up so close? So I spend the next few years enjoying my daily rests (and nightly insomnia) like that.

watching sid the science kid on the ipad pic by jenny cu

Guess whose diplopia got significant worse? I’m at prism 6 now. That’s really bad. Guess whose orthoptist now tells me this iPadding hurts my eyes and all the kids are getting diplopia and nearsightedness because they are buried in their electronics? I’m so hip.

(don’t talk about hips)

Guess who doesn’t need reading glasses anymore because the nearsightedness cancels out the ageing eye? Guess who still needs glasses because diplopia is up close too.

Guess who needs her eyesight for her most dearest activity: drawing?

Final question: guess who has the kind of personality to implement solutions in a rigorous way and get things sorted?

Muffin Tin Monday - puzzle time! April is Autism Awareness Month! pic by Melissa for Autism Awareness Month.

I am standing and typing this. I have arranged a stand up workplace in the front sitting rooms. I’ve brought my drawing equipment here. I am thinking of bringing the sewing machine here too. You can sew standing up.

I’m getting new glasses. I have a timer that reminds me every 20 minutes to look up and gaze afar, resting my eyes.

I found a blog about aligning your skeletal structure, your posture, so the long muscles and tendons work the most efficient and do not bother the bursea. It’s Nutritious Movement.com, blog from Kate Bowman. I now re-adjust my post every 7 minutes or so. Until it’s a new habit.

This is my timer, from Bengt EK Design:

Because life is so funny…

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.

Adequate Hydrocortison Supplementation

The past ten days have been a wonderful, wonderful ride. I’m alive again!

I’ve upped my Hydrocortison daily dose from 20 mg to 35 mg.  It may sound like a lot but actually it isn’t. Anywhere between 20 and 50 mg per day can be normal for an individual. 35 mg seems to be my sweet spot. I can feel when it’s too much or not enough. Very interesting experience!

I also learned how to spread the dose throughout the day in a more physiological way (take 2/3rds of the dose before noon, take it in increments of 5 and 10 mgs)

Alive again! I’ve got energy! I’ve got stamina! I’ve been doing things I haven’t done since 2008. Things like taking a shower before bed. Just because I felt like it and wanted to feel the warmth of the water. I could never do that because it would affect homeostasis badly. I had to plan my showers. Each day I could chose to either take a shower or cook dinner. Couldn’t do both.
Now I can :)

I’ve taken walks into the city. I’ve started to do a little bit of exercising. One morning I just took the car and drove to my friend, just to have tea with her and eat all her chocolates, and then I drove back home and did some other things for the rest of the day. Without crashing.

Reverse Therapy is a tremendous help in keeping things fun. Doing things because I want to do them, not because I can do them.

Suddenly giving my body the hormone it lacks has affected other hormones. I’ve noticed changes in Thyroid hormones, Testosteron, Estrogens and Progesteron. Insulin too, probably.

I have the good sense to do HRT on a dose that doesn’t exceed normal daily production so any effects I have filter out of the system within a day. It’s interesting how I can influence it though. With food, with Progesteron cream, with calming the nervous system.

Today my medical tags arrived. I’m going to wear one of these whenever I leave the house and am in risk of getting in an accident or experiencing dehydration.
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I may order some new ones, with less info on the front but more readible. These tags are quite small in reality. I doubt anyone who finds me collapsed in the street will notice. And/or has her reading glasses nearby to read the information ;)

  • I will wear it with a white band with red crosses on it. I’m thinking of embroidering them myself. I could also learn bandweven…
  • I will wear these “upside down”, not in the way that I can read it but in the way that anybody grabbing my hand can read it. Seems more sensible.

I ordered these medical information tags from a wonderful company here in Holland: Healthband. They are very good, fast and reliable. They keep an eye out for optimum spelling and lay-out of the text and won’t start engraving until you give the final consent. Really good costumer service!

It’s a woman and husband company. She’s a diabetic and wears one of these herself. They noticed we lack a good supplier in the Netherlands for sport id tags and medical id and sos tags.

The tags themselves are good too. No sharp edges and quality engraved.

I chose to direct my information towards courages passers-by who find me collapsed or delirious from dehydration. I don’t dazzle them with the medical info, that’s all on the back. I try and tell them exactly what to do:

  1. feed me my pills. They’re in my bra. Do it! I’m in danger for my life.
  2. call the emergency services and say this: “adrenal crisis!”
  3. say the name and dose of the solution of injectable cortisol I need. I want the medical personal to know.

 

The hydrocortison is wonderful :)
I no longer need a wheel barrow to be carried around in to enjoy life:

It may still be a honeymoon period. I’m still figuring out a lot of things, for example this morning I woke up a zombie, I have difficulty getting things right through the night when I’ve had my insomnia again.

Insomnia!
Now I know for sure! When I/you wake up at 3 AM and are wide awake for 1,5 hors, that’s a cortisol surge. It is!
I can now reproduce it. It feels exactly the same.

The insomnia I have had my whole life is that: a cortisol surge at 3 AM. Puzzle solved!
Now onto the next: what causes this surge? That’s one of the queries I’m on now. That and the relation between homocysteine and my weird (scary) heart rhythms that I have since 15 months. Because I’m still doing the mB12 thing, now combined with Phosphadytil-serine which drives another keg in the same methylation system. My GP put me onto this.

It causes mild brain storms, literally. But luckily I can move more easily now and movement is marvellous for levelling hormones and weird brain chemistry. So, I’m off for a little walk now. It’s beautiful weather outside here.
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