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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Managing Adrenal Insufficiency

So, now that my ME is under control by applying the things I learned from Reverse Therapy (RT) there remains the adrenal issue.

The ME is gone, I’m in recovery. The past three months I no longer had the Wired & Tired and general “I’m so dead why am I still breathing?” feelings that go with ME.
But I did have the consistent nausea, especially in the evenings, and I did have to pace myself severely. I even had an adrenal slip up on March the 5th. When I was in a new surroundings, was too cold, had been upright for 5 hours on end and was too stressed.
I started crying uncontrollably which is an alarm signal from my body that I need to make it safe asap or otherwise an adrenal crisis is in the works. It’s a scary route.

I cried. Took my pills. Took a long lie down in the car. Then drove home and went to bed. Took three days of rest.

Me resting in my car. I was wearing my hand felted princess dress and handknit socks. You should always be warm. And being wrapped in wool gives you a feeling of safety.

I’m not too good in the RT thing yet, I have to practice over and over again to relax, feel safe, and calm down the nervous system. But I’m well enough now to address the adrenal thing.

That’s why I had a battery of blood tests done, talked to my GP and had a consultancy with Adrenal expert Dusty Hardman from AddisonsSupport.com.

Dusty is not a doctor and will not make any decisions for you. But to the educated patient she’s a welcome sparring partner with lots of experience and knowledge. She herself has Addison’s and runs marathons -even wild ones, which lasts days and days- and researches Addisons’ medical info.

The blood tests were: hormones, electrolytes and more hormones.
My primary goal was, for both GP and Dusty, to find out whether I was wrecking things the way I’ve been supplying Hydrocortison until now. Secondary was to learn how to improve my protocol.

The risks of long term corticosteroid use involve loss of bone density; getting too high eye ball pressure and some other scary things. There’s also suppression of residue adrenal function, if you take too much.
When your adrenals cannot produce cortisol when you need it, say in an emergency like a trauma or dehydration, you run the risk of death. Quite quickly too.

As Pathology Personified illustrates it:

when vomiting twice, call the emergency services. Addisonian crisis is life threatening.

When vomiting twice, call the emergency services. Addisonian crisis is life threatening.

Addisonian Crisis: Medical emergency
14. Severe vomitting
15. Severe chest, abdominal pains
16. Back pain
17. Severe diarrhea
18. Syncope, fainting

Refs: 1-13 Merck Manual 18th Ed (2006); 1-4 Souhami & Moxham ‘Textbook of Medicine’ 4th ed (2002); 1,2,8,13 Goodman & Snyder ‘Differential Diagnosis for Physical Therapists’ 4th Ed (2007); 1-15, 12 Gray & Toghill ‘Symptoms & Signs of Clinical Medicine’ (2001); 1-3,7,14,15,18 Ballinger & Patchett ‘Saunders Pocket Essentials of Clinical Medicine’ 3rd Ed (2004)

But I haven’t had an Addisonian crisis yet. I’m still in the process of determining how my system is doing.

The electrolytes showed that calcium-magnesium was ok-ish but low on magnesium. Natrium-kalium was perfect. My kidneys are troopers!
I’m having a bone density scan done soon (DEXA) to tell me more about the bone density. In the mean time I have started to do weight bearing exercises. It’s the only thing left to do at my age.

Don’t go taking calcium enriched supplements!
You’ll only put your bone-cells into overdrive and exhaust them before you’re old. Have you never wondered why the country that drinks the most milk, the Netherlands, has the highest portion of osteoporosis? Calcium from dairy is bad for you. Lies:

This is all lies!
Don’t eat so much calcium. At least fill up on Magnesium if you do take some calcium. It’s such an easy and unlogical assumption to think that because your bone is brittle and it’s made from calcium you need to take more calcium.

My GP taught me about a complicating factor: that the bone cells needs vit D receptors and these decline with age. You should have maximum receptors at age 30 because after that they dwindle and cannot help your brittle ass enough.
I asked whether I was perhaps lowering my amount of vit D receptors with the large amount of vit D I take. Just like you lower the amount of Progesteron receptors when readily supplementing. He found it an intelligent question.

The eye-thing has been checked by an optometrist and the eyeball pressure will be checked in two weeks by an opthmologist.

The hormone ACTH is the hormone the brain releases to get the adrenals to produce cortisol. My value is 19 in a reference scale running from 0 to 50.
With my supplementation of 20 mg of Hydrocortison my brain is still asking my adrenals to put out more cortisol. Hence: my brain has not shut down my adrenals. And: my adrenals/supplementation do not provide my body with enough cortisol.

Not enough cortisol also explains my residu symptoms:
– nausea (not enough stomach acidity. Not enough HCL in the world to help with this)
– not able to make choices. See last posts. Who’d knew this was a symptom?!
– crying inappropriately
– dropping blood pressure
– losing words when tired. I especially lose my Dutch nouns and verbs. English ones pop up instead.
These are all adrenal symptoms.

My blood work showed I don’t supplement cortisol enough. There seems to be no damage with the supplementing I’ve done so far.

Talking to Dusty and reading everything on her site has given me a new look towards Addison’s. Doctors still know very little about it. And what they know they haven’t thought through very well it seems. They are so scared of suppressing adrenal function that they rather have people on too low a dose, causing them to have a poor quality of life.
Whenever someone needs an acute higher dose they linger to give it to them, wrecking their body unneccessarily.

I have educated myself and have started a trial of higher cortisol replacement. I’ve upped my dose, with blessing from my GP. And boy, do I feel alive!

pic by St.Mattox

Suddenly the quality of my life has shot up. I’m nowhere where a healthy person is, who runs after the children or doesn’t think twice about getting some groceries before cooking dinner.
But I can take a shower when I feel like it. Not make it the one thing I do on a day.
I’ve just been outside, puttering about in the garden. It’s a gorgeous Spring day out there! I came inside and sat down to write this post, I didn’t have to lie down first.

I’m now on 25 mg HC per day. And I’m going to up it to 30 mc because over the past few days I needed to stress dose each and every day because one day we were taking a drive of 1.5 hours. The next day the optometrist was about to put painful drops in my eyes which would annoy my body for three days. The day after I had stomach pains. And today I worked in the garden.

These are all activities/events that require a little bit of cortisol extra.

Yesterday I was hormonal. I was cranky, weepy and aggressive. Looking at the calendar I saw it was ovulation day. I never have these symptoms on this day. At best I can muster up a little bit of arousal but overal I’m a very tame woman.

With the upped HC I am pouring extra hormones into the adrenal hormone cascade. Less of my Progesteron is needed to make cortisol and it’s probable that it flows into Estrogen and Testosteron production. (Test. was low in the blood test btw)

I took extra Progesteron to counter it. Problem solved.

This HRT is all a delicate dance. Luckily I supplement physiological doses so anything I overdo or underdo leaves the system within a day. And I’ve danced with my Progesteron and Estrogen for a few years now, all the HRT things I learned from that I get to apply to cortisol replacement.

Lots of things happening, in just these 5 days since my trial started. For example I also noticed that my thyroid is picking up. I had it tested too and it is within range but not optimal. Which explain the residu thyroid symptoms I had:
– poor digestion
– poor intestines motility
– hair loss

With only a few days of extra cortisol my thyroid is feeling more comfortable: no hair loss and a more warm body. No more cold from the bones!
I do need to take my Iodium/Kelp supplement every day though.

Kelp by Donna Adenine

Adrenals and Thyroids are the battery and the gas pedal of the body. I’m revving and going through my minerals and co-factors faster.
I now take diligently daily: Zinc, Magnesium, Selenium, Kelp, vit D and Q10. If I forget any of these the system bucks.

I also take Lithium (the mineral, not the drug) and Progesteron (and Zinc to keep an even brain chemistry.

The action plan I wrote out with Dusty:
1. take two weeks to figure out correct HC dosage.
2. in two weeks test to see if Florinef is needed. This helps blood pressure. The test to take is: Renin, at 8 in the morning, sober without breakfast and without having gobbled salt the previous day.
3. in two months test Thyroid values. They should be better than they are now. If not supplement.
4. around that time: test sex hormones. They should be ideal. If not I should supplement. We’re talking DHEAs, Estrogen, Progesteron and Testosteron. Testosteron for females should be a 0.2% solution.
5. in 6 months time retest the whole shebang as these are the values I need to monitor my supplementing and my well being. DHEAs, Renin, electrolytes, FREE T3, FREE T4, Total and Free Testosterone, Progesterone. All of these things need to be supplemented if deficient.
6. Repeat this monitoring battery of tests every 6 months.

Also. Now that I’m probably on full replacement of the adrenal cortisol, I’m now in danger of my life should anything happen to me. Addisonian crisis.
Because of this I will ask my GP for an emergency injection kit for 100 ml of Solu-Cortef. It’s a cortisol you inject into a muscle in case of adrenal crisis. It’s pretty much like an epi-pen and it will save my life in the same fashion an epi-pen saves someone with sever allergies..

I’ve also ordered two wristband tags that state my needs. I hope, should I ever end up unconscious or wounded, a smart bystander will find me, read the tag and do what’s needed.
In my case: reach into my bra and feed me the pills you find there. Then call the emergency services.
Or give me the shot.

OMG feeling alive again is serious business.

by Mark Aplet

two more things to tell you:

  1. the court case about the manure plant was lost. Don’t know how that happened, I had such solid and scientific arguments. I guess we lost to political agenda and biases. I will now learn to live with a manure plant next to my cabin. But I did manage to write three engineer rapports last year, when I was still ill from ME and adrenal issues. That’s something to be proud of.
  2. I still wake up after 5 hours of sleep. I can’t find a consistent factor. But the stress system is involved, that I know. I’m now looking into problems with the intestines, specifically the Ileocecal valve, which lies between the small and large intestine. This bit hurts, at night. And I have circled towards a dietary habit that is THE diet for problems with the valve. Two coincidences that prompt me to look into this ileocecal valve.

How come I end up talking poo to you again? Twice!