Right. Time to get an overview of my health and identify the various aspects and their symptoms. In order to have a clear understanding which daily medicines and measures are targeted at which aspect. In order to get a clear view of topics that are not covered and need more research.
My personal collection of issues, in no particular order:
- Progesteron deficiency. Not clear whether it’s ovary-caused or an enzyme issue. Clear is that I lack the hormone and, over time, my adrenals have not been able to keep substitute production up. Substitute; HRT. 10 mg per day blood level. Perimenopause is acting up lately, moodswings. Up to 20 mg.
- Nervous System not well instructed, tendency to do Fight or Flight as default. Three decades of this caused some damage and infavourable habits. Habits countered with therapy, Amygdala retraining, hypnose, EMDR. Daily conscious attention needed.
- some food and other sensitivities. Some are caused by gene make up. Gluten, dairy, green leaves, whole grains. Vanille flavouring, garlic, glutamate, caffeine. Blood sugar (and insuline) react intense to sweet tastes.
- immune system. Very robust, I don’t get colds or the flu. Needs more research though because I have a sore throat every night and react badly to dust. Gets influenced by cortisol-intake. Skin doesn’t heal well.
- adrenal insufficiency, acquired. They need fortification. Taking hydrocortison, 20 mg per day.
- explainable other things: cold extremities when I don’t take enough Iodium; crankyness when PMS; crankyness when not enough sleep; light headiness when not enough salt/BP; shoulder impingement
- unexplained symptoms since birth: sleep pattern. Pillow = zonk! 5 hours later I wake up in a state, takes 1,5 hours to calm down and get normal body temperature. Then I can sleep another 1,5 hours. Wake up unrefreshed. Sore thoat every morning. Slow heart rate (42 bpm), it sped up since 2010, at 60 bpm now.
- unexplained symptoms since 2008: fatigue; difficulty maintaining homeostasis; not able to function long in upright position (standing or sitting); brain fog; duodenum uptake only works when lying down; “heavy” limbs and body; not able to handle sounds, stress, surprises or temperature changes. Liver and bile problems (not working). Some awful thoughts due to faulty brain chemistry. Something with vit D. I need to seriously pace myself, it’s a necessity. No pain, grateful for that.
There we are. An interwoven complex of symptoms. I can assign most of the things I notice on a day to day basis to one of these (and act accordingly). Apart from the things at points 7 and 8.
The other things require a constant managing. From my stress levels to my food, from my house chores to the choices of social interactions. Which pill to take when and how much. Monitoring thoughts and feelings and allowing some and blocking others.
It’s a drag and a full time job!
But I need to step up my game because new things need my attention:
Lately the Progesteron thing is getting more difficult, where the feelings of despair are more intense and the HRT doesn’t resolve it.
This needs some more research since it’s probably time to look at oestrogen replacement and the connection with vit D, considering my age (menopause is looming). Before, any oestrogen would give me endometriosis and phyto-estrogen (soya yoghurt) would cause spotting. This may have changed.
The immune-system: I have only a basic understanding of. Cortisol dampens it and this is desirable but not too much. Stress dampens it (via cortisol) and this is not desirable at all.
I’d like to get down to the details. Learn about the various cells (T-cells) and what they need to function. I bet the lymph system is involved and it’s fond of fat so that’s interesting. What proteins and enzymes do the immune system cells prefer? Do I have those in abundance? Are some gene mutations hindering functionality? Why does anti-histamine work so well to relieve sleep problems in people with ME?
Do I have chronic infections that could explain the rest symptoms? My onset of this chronic fatigue and other problems was typical for an infection: a short bout of “flu” in Spring 2008 and I never got up from the bed. Crippling fatigue, brain fog, not the strength to keep my head up and eat something.
Adrenal issues played a role in that, back then. Some symptoms, especially the not (mental) responsiveness until some (salty) food touched my tongue is illustrative of adrenal crash. My husband had to physically put something in my mouth, while I lay drooling in my bed, before I could open my eyes, think and talk.
But weeding out those symptoms and the ones caused by Progesteron deficiency leaves me with some that indicate chronic infection. My overall body system is hindered by something. Something clogging the system in the core. Clogging cell functionality. I just don’t seem to produce the ATP I did before.
There are some parasites who interfere with ATP production. Some bacteria such as Chlamydia Pneumonia and Rickettsia.
I’ve encountered the following parasites for sure, because my husband and my cats are proven carriers: EBV; Herpes; Chlamydia Pneumonia; Rickettsia. Coxiella burnetii.
I’ve also been bitten by ticks when I was 23 years old. No signs of infection have emerged back then. I got sick when I was 37 yo.
I got sick 3 weeks after visiting a sheep’s farm with fresh lambing that later on turned out to have Q-fever (Coxiella burnetii.)
Ah and there is one thing I do not wish to research at this moment. My heart. I’ve been experiencing weird rhythms and tight feelings. But I know the heart does this in many people. And I know people with ME are prone to develop collapsed matrial valve. And I have long term high cholesterol, due to my medicines.
These heart things are recent, the last 5 weeks. They occur daily now. I’ll let my GP listen to my heart when I see him in 3 weeks. But I will not research this topic.
Lastly I came up with three theories of what has happened to me in 2008 and after that. Trying to explain for the weird bout of healing I experienced last year:
- I got infected in 2008 and now have a chronic infection that wrecks my body. This is what ME seems to be, a chronic infection with a bug that hinders normal cell functionality. Akin to malaria, Lyme, HIV, EBV, Hepatitis and the lot. It comes and goes. But it never leaves.
- I got infected in 2008 and conquered the infection. But somehow a switch got turned and now my body operates in a different way, not allowing for maximum health. These switches could be genes that were turned on. Or habits/modus operandi the body settled into. Perhaps I flipped the switch on May 1st 2014 but the stress of Spring 2015 flipped it back.
- Whatever happened in 2008 for certain is that on May 1st 2014 I healed overnight (the night I started 100 mg of daily Progesteron and Gupta Amygdala Retraining). I was slowly but certainly healing from that day on until Februari 2015. Then the cat got sick, I experienced some major stress and subsequently fell ill again (bile gave out, liver pain). Have not recovered. Did I get infected by her eye conjunctivitis bacteria back then? Is this nothing but a second stint of intracellulair parasites?
Just three things to keep in mind. To keep my mind open about what’s happening. To consider alternatives and not get stuck on one particular idea about what my illness is and where I am in the process.
My research topics for the coming months, in no particular order:
- HRT for peri-menopause: oestrogen, vit D
- immune system: T-cells and their sisters, fat digestion and distribution through body (skin, collagen), lymphe system, reaction to chronic infections, tools for intracellular parasites
- intracellular parasites. How do they live, what environment and nutrition do they want. What are the likely culprits in my case?
- are there alternatives to long term anti-biotics to battle intra cellulair parasites. Can cellulair environments be altered to annoy the little buggers for example? (acidity; flush out certain amino acids; ketogenic energy modus; aid T-cells)
- the liver problems. This is a specific thing in me. Bile production stops with stress. I want to help my liver. Research the amino acids Glycine, Taurine and Niacin.
Three and five are subjects I am genuinely interested in. Intellectual curiosity. I want to learn about these topics, regardless of my personal situation.
This is good. I need some topics of thought to direct my attention to when I start moping or thinking about the grand scheme of things (which leads to depressive fatalistic thoughts). Part of the mental hygiene routine that’s required when you’re dealing with chronical illness, moodswings and/or life in general when you’re a sensitive and alert human being.
Well this is it. The map. The routes. Better get started.
I estimate to ponder these things for about three months.
In between there will be that GP visit (main goal is getting psychiatric help for the brain chemistry thing).
And the manure factory plans are coming to an all high in the coming months too, it’s at the highest court of my country at the moment and the engineers’ rapport I wrote (in February 2014, right in the middle of the stress!) is one of the key features. I expect to write some more documents and meet with experts on a moments’ notice. This will put me to bed without a doubt.
I heartily hope no other stress factors emerge in my life because I do not have the reserves to cope. Please no family crises or friends in danger or cat-astrophies. In the mean time I shield myself from world news and noise and bad foods
I’m addressing the known health factors in the numbered list at the top like nobody’s business, doing all the right things. I can’t go out, I’ve already cancelled all wooly meetings I had planned, I’m resigned to being housebound again. Only with careful pacing will I meet the two challenges described (GP and court case) and preserve the current level of health.
Hopefully my research will unearth some new things to try and give me a leg up to get to better health again. I’ve also mourned the fact that I’ll never work again. And that I may never get to another level of health. This is behind me now, I’m now sailing through a blissful bout of denial about the latter thought. The realisation of a dwindling life comes and goes. But never leaves. The Nile is a lovely place to visit every once and a while.
pic by Sarah Corr