Begin again

I’m sorry if any of you worried for me, you had some merit in your concerns, but I am ok again – and I managed to make it through a rough period without hating myself, which is huge progress.

It’s been a while.

Why I disappeared…

To be honest, I am not sure exactly why or how it happened when it was happening. I just woke up one day and realised how much my life was packed for every waking moment. On top of the sense of unease as someone with social anxiety (which started when I started to get a decent following), I needed to take a break, but it was far more than that in the end.

For those who don’t know, things got pretty heavy in my life around December last year. I lost my dog of over a decade – Leela, and we ended up with a new puppy which was planned but came earlier than expected – Simba. We had a family health scare.

Along side that, for the first time since the pandemic began, New Zealand began a let it spread approach with Omicron (which hasn’t immediately come to break things, but isn’t great). I became a hermit, I have been out in public less than a handful of times since the change in policy. Being isolated in the country was already part of my life, it’s just become more extreme.

This was hard to deal with as I have a large Twitter network with people from New Zealand, and the shared anxiety made me want to limit my time.

The emotional and time toll this took on my life started a mini chain reaction.

Approaching burnout

I was doing a lot at the end of last year, and at the start of this one – the kryptonite of not being able to see when I am burning the candle at both ends struck again. This time I managed to pull back before I completely bottomed out. I have at least become far more compassionate to myself. However, this was an emergency stop, rather than easing back.

My to do list each day was nearly a page, with nearly every second from waking to falling asleep dedicated to some form of productivity. I thought I could do it forever, but all it took was a few days of feeling run down for the pin to drop. I was doing paid and pro-bono coaching, trying to advocate for neurodiversity, all the cooking/cleaning, trying a new way of dieting involving low-histamine, blogging, writing a book, researching, and reviewing nearly a book a week, walking my dog two times a day.

The amount of hours I was working, writing, researching, or doing non-fiction reading was roughly one hundred. It reduced to the minimum level I could while I still saw the clients I needed to, but I still at times cursed myself for not meeting my own unachievable expectations.

Scared about letting people down created an anxiety spiral – having published an ambitious schedule for myself and my blog at the start of this year – never considering that I needed a break – missing a single self set deadline for a blog started a complete withdrawal from social activities. I told myself – I had to get a blog done, I had to catch up… then I could re-engage – otherwise everyone would see me fail – but if I disappeared, maybe they wouldn’t notice.

Finding an escape in old comforts

I’d love to say I’d spent my time doing something truly noble, still working toward life goals, and doing something “productive”. The truth is that I took a vacation in the one place I have been escaping to since I was a young child – video games.

I picked up Final Fantasy XIV (the MMORPG). There were finally Oceanic servers, and the last few expansions for the game had incredible reviews. I had tried to play it early on but found that the pacing and speed of the game were too slow for my interests at the time (roughly a decade ago).

Now it became something to hide from the world, inside another one where everything was also going to hell… The main difference being, I felt like I had agency to help with the issues of this virtual world.

This ended up being the vacuum into which all my life got drawn into – in roughly two months I finished the Main Story Quest campaign. For people who don’t know, this takes roughly five hundred real life hours of effort, you can do the math to work out how much my life had been consumed.

Maybe at some stage I will talk about this game – as it’s impact on me, and the story it tells are perhaps the most significant I’ve ever had from a video game, and it contained a lot of thematic content that had messages I needed to hear in order to start withdrawing from the game when my time inside it started coming to an end.

Plans for the future

Look if the Musk deal goes through – I will leave Twitter. I don’t really want to see what happens when a billionaire edge-lord with the social maturity of a toddler takes over the platform. I am hoping the deal fails. In the mean time I am going to casually start using the platform – and trying to catch up with a lot of people I have been meaning to without knowing how to – there’s no perfect way and I will just get to it.

The near future

I am trying to get back into healthier habits, I am dedicating more time each day to returning to the work I want to do, but I am also trying to learn to identify my limits before I start to exceed them. As someone who spent their life just living according to other’s expectations, learning to set my own takes a lot of work.

My goals are as follows:

  • Blog more
  • Tweet occasionally
  • Re-engage with science reading
  • Finish my book
  • Grow my coaching business
  • Work on a project with my wife

Thanks for reading if you have, I am looking forward to contributing more – I just need to make sure I realise that I too have limits, and those limits need to be respected.

RTotM – 30ish days following a Low-Histamine Diet [Part 3]

At the end of December I decided that I was going to try giving a Low Histamine diet a try, on top of that I was also supplementing my health with a vitamin schedule. Details on the diet I followed can be found here: Low Histamine Diet.

There is quite a lot of conflicting information on histamine on the internet, and that is one recommended by a specialist in Mast Cell Activation Syndrome who treats it professionally.

I should point out I didn’t follow this religiously, but it did provide a lot of insights when I did follow it to the letter.

The Pros of Low-Histamine Diet

Honestly, there are changes here that are nothing short of miraculous for my mental and physical health. Luckily I can share all the data for the stuff I ate and the corresponding results from changing or deviating from the diet itself.

Memory Benefits

This is probably the area where I had the most significant change. My recall was excellent, but the main area of recall that improved is that I could tell you pretty much in totally what I had done that day once I got about 3 weeks into being on the diet. This is not something I have ever been able to do. Retracing my steps when I lost something (which did still happen) was an easy task, I never had to randomly guess at the location I had left something. If you have quite serious ADHD you will know how much time this can take from you.

My short-term memory was improved also, I was able to hold more information in my head, there was less interference that seemed to make this ability hard for me. As a result I was able to achieve a lot more each day, and I didn’t get lost while doing a task, I was able to execute it easily from start to finish.

Executive Function / Task Initiation

Planning became a breeze, not only that any fear that I would not be able to start just vanished, there was no invisible barrier to stop me getting on with doing something. I was able to keep an ever growing routine which was made up of many daily routines. This is how my day’s routines played out over the last few weeks (I consistently built up to this, I didn’t rush straight to doing this all in one go, I believe in steady progress, and then stopping and pulling back when you reach a limit).

Morning Routine:

  • Wake up at 6AM
  • Make Coffee for my wife
  • Drink a half glass of water
  • Drink a full glass of water with 15 mls of Raw Apple Cider Vinegar
  • Prepare breakfast (have an advantage here in that I eat the same thing every day) – A Bagel with Cream Cheese (one of the few cheeses allowed on the diet), 4 Brazil Nuts (to get Selenium – these are actually not allowed, but breakfast was my high histamine meal), a small handful of macadamias or almonds (again almonds are a borderline histamine food). A cup of peppermint tea.
  • Listen to a Stoic Meditation
  • Eat Breakfast
  • Take Vitamins
    • Breakfast Vitamins for me:
      • Vitamin D3 1000 IU
      • Hempseed Oil 1100Mg (Omega3 + Omega6)
      • Fish Oil 3000Mg (Omega3 + Omega6) – Phasing these out to Hempseed Oil
      • Magnesium (500Mg Marine Magnesium) + Turmeric 1000Mg
      • CoQ10 300mg (Ubiquinol)
      • Zinc (14.9mg), Magnesium (18.6mg), Maganese (2mg), Retinyl Acetate (860ug), Vitamin B6 (50mg)
  • Brush Teeth
  • Walk for twenty minutes
  • Write in Stoic journal
  • Plan my day
  • Take Simba for a forty minute to one hour walk
  • Meditate for fifteen minutes

Day Routine:

  • Drink Water
  • Take Vitamin
    • Cognition FX Tablet
      • Choline Bitartrate (40% Choline) 200mg
      • L-Theanine 200mg
      • Bacopa Monnieri (50% extract) 150mg
      • Rhodiola Rosea (5% Rosavins) 150mg
      • Gotu Kola (40% Triterpenes) 100mg
      • Vitamin B12 50mcg
      • Folic Acid 300mcg
      • Huperzine A (Huperzia Serrata extract) 100mcg
      • Vitamin E 30iu
  • Drink Tea – Red Bush Tea (Rooibos)
  • Eat healthy lunch
  • Play Beat Saber for thirty minutes to two hours
  • Coach people
  • Do the dishes + washing + vacuum if needed
  • Write for thirty minutes to two hours depending on coaching appointments

Evening Routine:

  • Take Simba for forty minute to one hour walk
  • Cook a low-histamine dinner
  • Spend one to two hours with my wife
  • See night time clients for coaching

Bed Routine:

  • Start at 9PM (When I don’t have late clients)
  • Write in Stoic Journal
  • Meditate for fifteen minutes
  • Drink Tea (Camomile and Passion Flower)
  • Read for thirty minutes
  • Take Vitamins
    • Night Vitamin (the probiotic is taken just before sleeping)
      • Probiotic 100 Billion Bacteria (I need to change this due to L. Casei which causes an issue with Histamine, there may be others too – I need to find a better brand here)
        • L. acidophilus
        • L. fermentum
        • L. paracasei
        • L. rhamnosus
        • L. helviticus
        • B. longum
        • S. thermophiles
        • L. plantatrum
        • B. bifidum
        • B. lactis
        • B. breve
        • L. casei [This is bad]
        • L. reuteri
        • L. delbrueki subsp.lactus
        • B. coagulans 

Stress Levels / Heart Rate

My stress levels plummeted. I couldn’t believe how calm I was nearly all the time, obviously when stressful stuff happened I was affected but my residual stress level dropped to nothing. My resting heart rate started to get toward the athlete range after being consistently high. I have included the fluctuations from November, then I started the diet on December 26th, then I stopped on the 20th and went back to my old diet.

Autoimmune / Skin Condition Changes

My gut pain was non-existent. My bowels moved properly. My skin cleared up completely. These changes were some of the best.

Sensory Changes

Bye Tinnitus. Bye Misophonia. Hyperacusis remained – my hearing is still really acute, but I don’t get interrupted by noise anymore. I don’t have constant ringing in my ears.

The Downsides of Low Histamine

The diet is very restrictive and there is not a lot of flavour in most foods, pretty much all condiments are out, and you can use a limited array of spices. It does make it hard to follow at times, and I would be lying if I didn’t say that sometimes I just wanted to break my diet – but the benefits speak for themselves.

Will I continue?

Yes. Absolutely yes. There is no doubt in my mind that histamine is partially responsible for my ADHD. I was able to achieve more than I have ever achieved in my life over thirty days while on it. I did a week off it to see if it was just a placebo effect – I was fatigued, I got depressed, I was anxious and stressed, my muscle pain returned, I got light headed a lot. My memory got worse. I basically started regressing in days. My tinnitus started to return.

In order to show you what I ate (and I wasn’t a saint, I will probably add cheat days into the diet) I will share my MyFitnessPal data [Below] (Note: I was trying to keep to the calorie count, but I actually don’t care now – I just eat till I feel satiated and then stop. My weight is stable and the only reason I exceed awful BMI measurements is because I have too much muscle). My supplements do change over time.

The only thing I have also done recently is give up caffeine, you will see that I had an energy drink and a stand alone L-Theanine supplement early on. I have been recommended to quit caffeine, but I am not sure I will continue as it’s so far been more detrimental than beneficial. Caffeine is a DAO enzyme inhibitor.

In Conclusion

I hope this information helps someone, and you can potentially try it for yourself. Please note some of the supplements I take are not the ones recommended for MCAS – I have genetic reasons for trying to supplement these things.

If not for @laurenancona on Twitter, I may not have pursued this. I am branching out with what I eat now, and also trying to introduce certain histamine liberators as well as trying to seek a diagnosis for MCAS, but there is a few month wait.

I am fairly upset though, so much of my life I have been limited by a food issue – and when I tried diets, none of them targeted histamine. The difference is stark for me. I could have potentially not had to deal with the most annoying parts of ADHD had I treated this early.

RTotM – Histamine Receptors in the Body [Part 2]

After finding out that histamine might be responsible for a lot of my health troubles I wanted to dig deeper into the role of histamine itself – what did the receptors in the body do?

The Four Histamine Receptors (H1-H4)

There are four histamine receptors H1-H4, that perform a number of various function related to immune system response. They are found in lots of different cells within the body. There are also histamine receptors and releasers found throughout other neurons – such as serotonin, dopamine to name a few.

First a diagram to demonstrate what cells they are involved in, and also which functions they seem to perform:

Histamine H1 Receptor

Has a role in:

  • Cytokine and chemokine production [Which is an immune system response]
  • Adhesion molecule production [Also used as an immune system response – to help with clotting (among other things)]
  • Allergy and inflammation [Yes, those annoying parts like skin outbreaks, and swelling are a result of histamine H1 Receptor activity]
  • Vasodilation [The widening of blood cells – usually as an immune system response]
  • Bronchoconstriction [The restriction (tightening) of smooth muscles used for breathing – a core part of asthmatic responses]
  • Platelet aggregation [Part of the immune system response to clot the blood, and to stop you from bleeding further]
  • Hyper mucus secretion [the secretion of mucus in the throat or lungs – a core part of COPD (chronic obstructive pulmonary disease)

As you can see – the H1 receptor is linked to a lot of issues – there is evidence that taking H1 Antagonists (meaning reducing activity) known commonly as anti-histamines can help or even inhibit these responses. Skin conditions and nasal congestion are the two most common expressions of H1 Receptor activity and the main reason that people take antihistamines. An abundance of histamine can cause breathing issues (related to constriction and mucus generation), and can also cause hypersensitivity to skin – resulting in eczema and other atopic dermatitis responses.

Histamine H2 Receptor

Has a role in:

  • Gastric Acid Secretion [Quite a huge role in GERD (Gastroesophageal reflux disease), an over activity of this can produce excess gastric acid which causes a lot of issues with digestion]
  • Increased heart and cardiac response [Very clear that this is something that can influence arrhythmia (irregular heart beat) and tachycardia (fast heart beat) responses.

The H2 Receptor has a lot of roles as a gastric acid and heart rate modulator. An over abundance of histamine can cause a lot of issues with digestion, and can contribute to heart irregularities.

Histamine H3 Receptor

This is probably the one I am most interested in from a cognitive perspective as it appears to show up in a lot of central nervous system cells, and neurons in the brain.

Has a role in:

  • Sleep-wake cycle [The regulation of sleeping and waking – fairly self explanatory]
  • Cognition [Appears to play a role in blood brain barrier permeability which leads to a whole heap of cognitive effects]
  • Homeostatic regulation of energy levels [This seems to play an important role in hunger and might have a significant role in eating disorders]
  • Neurotransmission [One of the ones I am personally most interested in – it seems to inhibit multiple important neurotransmission when there is an excess of histamine in the brain]

So this one is huge, it seems like it controls homeostasis a lot of our bodies, it seems to have a huge role in core systems that maintain our day to day living. H3 Antagonists have had interesting results and are currently “used to treat obesity, myocardial ischemic arrhythmias, cognition disorders, and insomnia”.

Histamine H4 Receptor

This seems to be really important in Mast Cell Activation Syndrome. From my layperson understanding it seems to be the receptor responsible for the release and control of histamine within the body as part of immune response (among other compounds released).

Has a role in (a lot seemed to be shared with the H1 Receptor):

  • Cytokine and chemokine production [Which is an immune system response]
  • Adhesion molecule production [Also used as an immune system response – to help with clotting (among other things)]
  • Allergy and inflammation [Yes, those annoying parts like skin outbreaks, and swelling are a result of histamine H1 Receptor activity]
  • Vasodilation [The widening of blood cells – usually as an immune system response]
  • Bronchoconstriction [The restriction (tightening) of smooth muscles used for breathing – a core part of asthmatic responses]
  • Platelet aggregation [Part of the immune system response to clot the blood, and to stop you from bleeding further
  • Ca++ release from Endoplasmic Reticulum [This is the part of cells in which transportation between parts of the cell takes place]
  • Degranulation [A core part of immune system response to diseases – which releases a number of different compounds of which histamine is one of them from Mast Cells]
  • Chemotaxis [A process whereby Mast Cells accumulate more of these immune system response fighting compounds]
  • Immuno-modulation [As it implies regulation of the immune system response]

As you can see this one may have a huge role in histamine intolerance. Those who have ended up storing more due to activation of chemotaxis (caused sometimes by acute stress) can end up having huge inflammatory responses in response to minor threats – e.g. over active bronchoconstriction resulting in an asthma attack.

In conclusion

Everything that I have mentioned here is explained in the paper I used the diagram from and is available here with way more jargon.

You can see that histamine seems to have a huge role in many systems, and is now becoming more of a research subject. One theory of depression has been around inflammation, and this could very much be the part of this particular type of depression. Recently they have been questioning histamines role and it might seem to explain treatment resistant depression – which is a finding they had last year with mice.

In the next blog I will explain why I tried a low histamine diet and how it seems to have affected me. Suffice to say that in my case I believe a lot of my problems stem from the dysregulation of my histamine system.

RTotM – Histamine’s Role in My Life [Part 1]

Those who follow me on Twitter will have seen me talk a lot about histamine over the past month and a bit. It has become a central focus of my independent research and I have been running experiments on myself in order to see if I have a histamine intolerance.

This will be a 3 part series – the first I will cover is how I ended up looking into this, the second will explain the role of histamine in the body, and the third will look into the effects of a low-histamine diet on my health.

I want to give a bit of back story for how I started to get interested in this particular avenue.

SSRIs never worked for me, and I ended up with microscopic colitis from Sertraline

TW / Gross stuff / Medical stuff

Late last year I discovered after a biopsy done during a colonoscopy that I appear to have microscopic colitis, rather than having a Crohn’s disease resurgence. This made me begin to question a lot of things about my past, in fact before my colonoscopy I had been going through my health notes as a detective.

I was started on Sertraline in the mid 2010s. I then complained about diarrhea and nausea symptoms, but this was attributed to my Crohn’s disease having another flare, but the location of this flare was not the same place as when I had previously had it, and it wasn’t near my resection site.

For the next five years I was in and out of hospital with increasing doses of Sertraline to manage the depression that it appears that was mainly a result of Sertraline – it caused multiple issues in two different work places – I spent roughly nine months with painful anal fissures waiting for operations to fix them.

During this time I actually stopped taking Sertraline and tapered off it with my doctor’s knowledge. That year I didn’t have any anal fissure complications, however when a series of external to me life events happened (my father dying, one of our cats passing, and a family member having a breakdown), it was agreed that I should go back on it to make it through this period.

Shortly afterwards, gastro complications occurred again. I complained about nausea and diarrhea and was told to persist. Then sure enough, I needed another operation. It has now been confirmed that this can be a complication of Sertraline in some people.

How does this work though? It’s a “brain” drug.

This made me begin to wonder the mechanism of action that could actually cause this in me. It turns out that there are different serotonin receptors in the body, and in fact 95% of all serotonin is stored in the gut, not the brain.

A few of these receptors are largely responsibility for gut motility (or the passage of food through the bowel). Sertraline works as an 5HT3 Agonist (one of the different serotonin receptors) – meaning that it drives the uptake of serotonin through this receptor. Unfortunately this was causing food to rush through me and causing me to process a lot of undigested food in my large colon, this caused damage to the walls of my intestines, and as a result I ended up with anal fissures and microscopic colitis.

Long COVID / MCAS / Histamine Intolerance

Roughly around the same time I was looking into science into Long COVID with the rise of the Omicron variant, and the possibility that I would likely end up with it if I contracted the virus I began investigating possible things that would help to prevent this from happening. It was here I discovered histamine intolerance, Mast Cell Activation Syndrome, and their relation to Long COVID.

Histamine’s role in the body is still largely under researched

When I saw this diagram on this MCAS website, I was floored. These are the complications I have been dealing with my entire life at different times and in different ways. I will highlight the ones that are relevant to me below.

In a more expansive list they have these ones – in italics are the ones I have:

Eyes – Red eyes, irritated eyes, dry eyes, burning eyes, difficulty focusing vision, and conjunctivitis (pink eye).

Nose – Nasal stuffiness, sinusitis, postnasal drip, hoarseness, laryngitis, nose bleeds (epistaxis), and intranasal sores.

Ears – Ringing in ears (tinnitus) and Eustachian tube dysfunction (blocked, popping ears).

Throat – Vocal cord dysfunction, throat swelling, sores on tongue/mouth, itchy throat, burning mouth, and difficulty swallowing

Skin – Hives, angioedema (swelling of the skin), skin flushing, itching, skin rashes, dermatographism (when scratched skin causes a red welt), chronic itching, urticarial pigmentosa (legion/hive-like spots on the skin), flushing, bruising easily, reddish or pale complexion, cherry angiomata (skin growths), patchy red rashes, red face in the morning, cuts that won’t heal, fungal skin infections, and lichen planus.

Cardiovascular – Fainting, fainting upon standing, increased pulse rate (tachycardia), palpitations, spikes and drops in blood pressure, high pulse or temperature, high triglycerides, lightheadedness, dizzy, hot flashes, and postural orthostatic hypotension syndrome (POTS).

Respiratory – Wheezing, asthma, shortness of breath, difficulty breathing deep, air hunger, dry cough, chronic obstructive pulmonary disease (COPD), and chronic interstitial fibrosis.

GI Tract – Left upper abdominal pain, splenomegaly (enlarged spleen) epigastric tenderness, nausea, vomiting, diarrhea and/or constipation, abdominal cramping, bloating, non-cardiac chest pain, malabsorption, GERD/acid reflux, cyclic vomiting syndrome, colonic polyps, and gastric polyps.

Liver – High bilirubin, elevated liver enzymes, and high cholesterol.

Neurological – Numbness and tingling (especially in the hands and feet), headaches, migraines tics, tremors, pseudo-seizures, true seizures, waxing and waning brain fog, memory loss, poor concentration, difficulty finding words, and spells of cataplexy (suddenly becoming disconnected from and unresponsive or unreactive to the world around).

Musculoskeletal – Muscle pain, fibromyalgia, increased osteopenia, osteoporosis, weakness, and migratory arthritis (joint pain).

Coagulation – History of clots, deep vein thrombosis, increased bruising, heavy menstrual bleeding, bleeding nose, and cuts that won’t stop bleeding.

Blood disorders – Anemia, increased white blood cell count, platelets, decreased white blood cell counts, decreased neutrophils, decreased lymphocytes, decreased platelets, reductions in CD4 helper lymphocytes, reductions in CD8 positive suppressor lymphocytes, reductions or excesses of IgA, IgG, IgM, IgE, a known condition called MGUS, myelodysplastic syndrome (reduced red cells, white cells, platelets), and increased MCV (mean corpuscular volume).

Psychiatry – Anxiety, panic, depression, obsessive compulsive disorder (OCD), decreased attention span, attention deficit/hyperactivity disorder (ADHD), forgetfulness, and insomnia.

Genitourinary – Interstitial cystitis, recurrent bladder infections, sterile bladder infections, and frequent urination.

Hormones – Decreased libido, painful periods, heavy periods, infertility, and decreased sperm counts.

Dental – Deteriorating teeth.

Anaphylaxis – Difficulty breathing, itchy hives, flushing or pale skin, feeling warm after exposure, weak and rapid pulse, nausea, vomiting, diarrhea, dizziness and fainting.

How do I test for it?

Well, this part is harder, I cannot definitively say that I have MCAS with a histamine intolerance, but there were a number of indicators. Last year I started to investigate my genetic data – I had signed up for Ancestry to confirm a family tree I have (surprisingly it’s incredibly accurate). This gave me access to my DNA data. I started to use health websites to investigate what was going on with my health.

Genetically, I shouldn’t have ADHD according to what we know about ADHD genes

Using a site called Self-Decode (which was one of the more expensive sites) I came out with this result:

I definitely have ADHD, but the origins of mine might come from somewhere else – namely I think I have it due to things related to histamine.

There are some key genetic mutations associated with MCAS though – one of them is the MTHFR C677T Gene.

MTHFR – C677T Mutation

This is taken from Genetic Life Hacks (a much cheaper health analysis tool, but with less content than others).

I have extremely reduced enzyme function for methylation – this can lead to among other things – histamine intolerance.

On top of that I have a few HMNT and DAO enzyme genetic mutations, these are the enzymes used for breaking down histamine in the body. I unfortunately have less of an ability to do this as well as having a shorter bowel which means that a lot of histamine isn’t eliminated from the body due to less ability to process it.

I am a perfect candidate for histamine intolerance.

But histamine is just a thing that is related to having itchiness I thought?

In part two I will explain just how expansive the role of histamine is in the body – and how I linked it to serotonin – in my case it might be directly responsible for the parts of ADHD that suck I have to deal with.

I will also explain the changes in my body and my mind following a low-histamine diet for 30 days – the results were nothing short of miraculous.

A Different Year – A Different Focus

No man ever steps in the same river twice, for it’s not the same river and he’s not the same man.

Heraclitus

Last year was a year of great personal growth for me. From the confirmation in early January from medical personnel that I was Autistic (a process I wouldn’t engage in personally again due to stigmatisation, and realising how little this profession actually knows about neurodivergence in general).

2020 in Review:

I spent a lot of time introspecting on life. From that I started to ask myself a few key questions:

  • How exactly did I get to where I am today?
  • Who am I at my core?
  • What should I focus on going forward?

How exactly did I get to where I am today?

This was a hard period of reflection, as many know I gained my memories back as a result of being prescribed mediation during Autistic Burnout, a brutal gauntlet of re-traumatisation occurred.

From that I started to read a lot. I’ve read probably 5000+ hours worth of information on neurodivergence, science around being an AuDHDer (Autistic + ADHD), and general neuroscience, biomedical science, and theories of cognition. Piece by piece I was able to put together an understanding of why my life had turned out as it did. There were a couple of key discoveries:

My Autonomy Was Lost at a Young Age

During the course of my reading, I came across a concept known as autonomy. The definition of this I find to be best by the APA:

the experience of acting from choice, rather than feeling pressured to act. This form of autonomy is considered a fundamental psychological need that predicts well-being.

autonomy – APA Dictionary of Psychology

From a young age this was crushed out of me for being neurodivergent, and the loss of my ability to live a life that was self-determined had repercussions that lasted until last year.

One of the ways I describe my pre-identification existence is that I felt like a tourist in my own life. There were elements of who I wanted to be and thought I was throughout my life, but when challenged by another person I would cave to their will. I was a people pleaser through and through. Only expressing my autonomy when reaching breaking point – often with devastating consequences for my self esteem as I tried to uphold a boundary that I should have had a long time ago.

The loss of my autonomy started a chain of thought that left me on uncertain ground – there was a question I had to answer now – Who am I?

Who am I at my core?

Before the full discovery of my being Autistic I had decided to become an ADHD Coach. I had enrolled into a course with ADDCA that I completed in October last year. I am now an ICF Member and very close to having the hours required to qualify for my first Accreditation (Associate Certified Coach).

Making a career change in my late 30’s again for the fourth (or fifth?) time in my life was something I had serious doubts about – I spent six weeks contemplating if this was something I actually wanted to do or just another ADHD impulse. It was, and it was self-determined too.

I expanded my knowledge and I am now also a coach who specialises in Autistic coaching as well. Undergoing training through Kieran Rose’s The Inside of Autism Course in order to upskill on top of what I was researching in science. This is a course I would recommend to any person interested in what it truly means to be Autistic.

I love my job – I do pro-bono work as well as paid coaching – you can find details of my coaching services on my work website – Eudaimonic Coaching.

But this was just my career – this isn’t who I am – no person is their job, as much as the world tries to make us believe that this is the case – we are worth more than our productive value.

In the last year I have finally realised one truth – I am fluid. My personality isn’t fixed. The concept of a self is foreign to me, and through reading Taoist philosophy, I have come to accept that not having a self is perhaps better than trying to strive toward an ideal that I could never understand. I have qualities that I try to express at all times – I have strengths that I cherish, but I am a slightly different person each day.

It’s taken me a long time to get to where I am – I am as close as I can be to self-actualized as an individual as you probably can be when you will probably never have the respect needed to reach that level from this society to truly be myself. I still must deal with the struggles of being neurodivergent in this world, but I am at peace with who I am now.

Now that I have found an inner peace after living decades in turmoil, scrambling to try and be everything to everyone – I am taking a step back from doing that. I am allowing myself to be an imperfect, flawed, and varied person. I am no longer striving to reach levels I have no personal aspiration to reach – I care not for fame, fortune, or glory – in truth I never have, but I questioned why I thought this constantly – now I have answers. I just want to live a peaceful life where I try to endeavour to make the world a better place however I can.

This has lead me to ask one final question:

What should I focus on going forward?

This is tough to answer. There are a few ideals I want to be true to:

  • I want to be authentic always – I never want to hide behind a professional facade that is encouraged by this world – I want to give people the what you see is what you get version of me at all times.
  • I want to learn and impart knowledge and understanding to anyone willing to listen and listen to everyone who will help teach me (non-judgementally) in return – I exist in a perpetual state of growth. Each day I try and nourish my mind with new information, I try to help those who I can, and I try to listen to new perspectives that help me ask more important questions.
  • I want to write in addition to coaching. I have always wanted to write or be creative, or perform. I dreamt of being an actor at one stage, something lost during the loss of my autonomy. I also wanted to be a creative writer – but I have creative scars that make me question my abilities – a block I am working on to move forward. In the mean time I am writing an autoethnography – my life explained through science – and the loss and rediscovery of myself.

I am going to write more purposefully this year on my blog. I am aiming to have a series of blogs each month (with these topics rotated a bit as to not overcommit myself), as well as developing a community around my writing – at the moment I think the series will probably encompass these topics:

  • The Recent Science of ADHD
  • The Recent Science of Autism
  • Musings on Philosophy (with a general focus on what it means to live a good life)
  • How I Create Joy in My Life as an AuDHDer
  • Random Theory of the Month

These will probably be on a monthly rotation with a lot of work going into each one. Last year I focused on volume of writing, and I developed a lot of skills doing it. The focus this year is going to be on quality of that writing.

Starting this year off right

This is probably the best first week I have ever had of any year in my life. I have been to the beach everyday with my wife and our new dog Simba (pictured below – A Beardy/Smithfield Cross):

Simba a dog with a fluffy coat who is tri-coloured - brown, white and black - looking with puppy dog eyes at the camera.
Simba – A Tri-colour (black, white, beige/brown) dog with long fur looking cute for the camera.

I have started eating a low-histamine diet – one of the other recent discoveries is that I most likely have Mast Cell Activation Syndrome, and with it a histamine intolerance. I will be doing a blog on this soon for the ‘Random Theory of the Month’. On this diet I have had a massive decrease in both sensory overwhelm, and an increase in short term memory function and a loss of brain fog.

I have spent quality time with my wife – my one New Year’s resolution this year was to spend more quality time with my wife. We were married in January 2020 (we have been together nearly ten years though), and shortly after I went through Autistic Burnout that took me the better part of the last two years to recover from (almost) completely. I want to spend more time with the person who carried me through my worst time, and make it more enjoyable.

I am trying to do less this year in general. I pushed myself far too much for 38 years, and I am going to ease up on myself and try slowing down even more than last year.

Thank you to all who read this blog – and as part of my community I am launching a Ko-fi again – the proceeds of which will be used to fund more pro-bono coaching for clients.

I hope that you can focus on the part of 2022 that you can make good for yourselves – the parts you have control over – because the parts we don’t are going to suck from early indications.

Have a great year and will write again soon!

How to Break and Remake a Person

Here is a draft outline of my book.

From Unwilling Chameleon to Emotional Octopus

I never thought I’d write a book. I never thought I could, to be honest. Most of my life people around me have been all too willing to let me know what they believe I am incapable of doing. The contents of this book will largely refute any current definition of what it means to be the person I am in current science, but I will show you with a neuroqueer lens, you too can see my way of viewing the world. I hope that you will come to understand that my biggest flaw was that I have been a co-operative person, stuck in a competitive system which I have fought at the core of my being.  

From a young age, I was slowly conditioned out of taking care of my needs, and before long I was living almost entirely, and without knowing at a deep level, for other people. Outwardly it might not have looked like this – I like to refer to myself during this time as an ‘Unwilling Chameleon’ – I could blend in, but the cost was extreme – a lizard-like disconnection from the self. 

To rework a saying of the abhorrent Ivar Lovaas, a founder of Applied Behaviour Analysis, I looked like a person in the physical sense – I had hair, eyes, a nose and a mouth – but I was not a person in the psychological sense. One way to look at it is that in order for society to “help me” as a neurodivergent child, they saw it as a matter of deconstructing a person. They had an almost finished natural product, but they had destroyed the person underneath in order for me to assimilate.

At thirty seven years old, I finally discovered the reasons why my life had turned out so differently to how I had envisioned it, and unfortunately not without nearly dying first. It turned out that living someone else’s life was unfeasible long term. I got to a point where I suddenly realised that I had been living as a tourist in my own life – and with that realisation came a phrase I often hear other late-identified neurodivergent people say – “I don’t know who I am”.

This book looks into the science of my existence, the process of repeated breaking and unmaking that took place, until finally reaching a level of critical toxic shame – where in this moment I was reborn, a chance given to me to act as a scientific detective in my own life to discover the underpinnings of what had happened, why it happened, and to discover what I might need to do to restore my identity. The good news is that within a year I found answers, and began the process of working toward a self-actualized neuroqueer existence – one I can proudly say, that I was able to reach.

The Neuroqueer Self and the General Conditions for Human Growth

In the first section of the book to understand the level of damage that was done to me, often by those with ‘good intentions’, I will need to define the set of conditions that make me the individual I am, but I will only discuss the ones I believe I had at birth, and explain how I believe others were added later. Far too much of my neurodivergence as defined by the medical model conflicts with my lived experience. 

I am a neuroqueer outsider, and I think I always knew that I was, since perhaps the age of three or four. To put this in terms you are likely to understand, at the age of thirty eight I discovered the full extent of my innate divergence. I am an ADHD, Autistic, dyspraxic, dyslexic, dyscalculic, and dysgraphic person, who is also a non-binary bisexual. These are simply differences about me and are rarely disabling in of themselves. 

At the core of these differences are changes in the way I perceive and sense the world, and the way I interpret information, and the way my body moves. My sensory system, communication style, mode of cognition, and the speed at which my brain operates seems to deviate from the neurotypical population in ways that often made me a target due to not understanding the nature of knowledge competitions, or what it truly meant to be living in a neuronormative society. 

To address the first of these systems – the sensory system – there are eight senses we currently know about (vision, auditory, taste, olfactory, tactile, gustatory, vestibular, proprioception, and interoception). I will propose the basis for two additional senses rounding out to a nice even number of ten.

The first of these senses is the feeling of being in control of our lives, our autonomous sense. We are wired to act with our own instinctive purpose. I believe that we sense this at all times. When we notice we are incongruent with this expectation, our bodies and our minds degrade – our sense of control is gone.

The second of these senses is our social sense. This specific sense can be measured in the feeling of isolation. The more isolated we feel from the social world, the more vast the changes to our internal biology, indeed one of the biggest myths on top of the mind-body duality which I will discuss, is the individual-community duality. 

Self-determination theory discusses in detail the importance of these senses, and at times where I did feel self-determined I was able to stabilize my health before an external factor of extrinsic motivation would rob me again of my happiness. 

My life would have turned out well if people understood one thing about me – I respond well to unconditional positive regard, a concept defined by Carl Rogers as an essential element for client centred therapy, and indeed the times where I was given this are the times where I was allowed to grow. It was thirty four years before a person in an authority position treated me this way – and began the process of identity recovery.

To give a more in depth understanding of the origins of my divergence, I will look into the science that seems to be plausible from a more mainstream neurobiological level, and in doing so will detail the ways in which current understanding of the medical model fails to account for the roles of the nervous system, the mind-body as a single unit, and the complex interactions between our sensory system and the world. No section more vital here than understanding the full role of neurodivergent ‘stimming’ behaviours at the neurobiological level. 

At the end of this section I will propose my understanding of the core set of conditions about what it means to be human in our world, and will propose a new theory of understanding of human mental health as it more accurately is beyond the myths of current understanding – the unifying theory of self-determined perceptive interpersonal neurobiology. 

The Forced Coercion of the Incongruent Self

In the next section I will detail the brutal process of identity erosion, the forced incongruence that constructed the unwilling chameleon. Beginning with loss of autonomy, the loss of competence, the loss of relatedness, the loss of self-esteem and self-efficacy. The heartbreaking reality is that despite my best efforts, I never truly belonged – the ‘flaws’ of my true self always revealed themselves under strain. 

As a happy but ‘odd’ neuroqueer child I drew attention to myself, and in the process allowed others to cast their judgement upon me – all the support systems meant to make my life better ended up making it worse for me. 

As a child who deviated from the norms of social rules, who had issues conforming to a neurotypical standard, it was me that was made to change – my school and parents reinforced this first. My own brain worked against me to embed a pattern of behaviourism at an unconscious level. 

The suppression of who I was caused a ripple effect on my identity, each new ripple revealing a new hidden challenge underneath – hypersexualisation, dissociation, substance abuse. 

Once I began living for entirely extrinsic reasons, I spent my teenage years on the brink of narcissism, only to overcorrect to people pleasing, and due to never getting either of these right, ending up with moral scrupulosity OCD as my reward. 

The manifestations were not only mental in nature, stress related physical illnesses started manifesting – first asthma, then eczema, then finally the auto-immune disorder Crohn’s disease. 

I tried to get help repeatedly, but I was invalidated, and my doctors denied my carefully researched evidence. I was twenty six before gaining my first mental health diagnosis – ‘depression’, despite being depressed since around the age of ten. This diagnosis and the treatment provided, ended up causing more damage than preventing it, and for the next ten years I gave myself a vast array of “side effects” on medication that provided no benefit, and at times made my life so much worse, the effects of which I am still dealing with even now.

I will explain the periods in which self-determination provided a protective effect that allowed me to sustain the damage to come, for these were vital for me understanding how I managed to continue.

The Breaking Point of Autistic Burnout

Unfortunately I didn’t discover the full extent of my differences before reaching crisis point, at age thirty six – I went through what I would describe as hell on earth – Autistic Burnout Major. A period of eight months of my life where I rapidly unravelled and did not realise what was going on, and I will discuss in detail what goes wrong if given meditation in critical care. I will also propose a hypothesis for what is happening at the neurobiological level. 

It was during this time that I finally did try to end my life – in some ways this was the death of the people pleaser, and from this time I discovered that which is inside me which is indestructible.

The Daily Practice of Restoring the Congruent Self

This section discusses how I managed to take the fractured reflection of a thousand shards of mirror that made up my current identity to find the pieces that made the congruent self. 

It was a single workplace at age thirty four that restored a part of my autonomy, but unfortunately external circumstances made me break before I could discover the root of who I was underneath. It was from this first piece of autonomy that I undertook becoming an ADHD self-advocate, a vital piece for discovering the rest of my divergence. 

The effect of this allowed me to find philosophy, because if what I thought about myself did matter then how could I become who I really wanted to be, and what did it mean to be a good person. It was at this time I discovered Stoicism – a key component that provided a rough guideline for me to rebuild my ‘Inner Citadel’ – the affectionate repurposing from this philosophy that came to mean for me restoring – self-determination, self-esteem, and self-efficacy. 

I began a process of self-therapy, I was still in burnout, with unidentified Autism and OCD. I began searching for answers and connecting with advocates outside my own current neurology. I discovered these differences on my own despite being in critical healthcare services. 

I began defining values, learning, and undertook a process which I call self-gaslighting – or how to placebo yourself.

From this time I began thinking about how I could ensure what happened to me never happened to anyone else – because what existed currently made me worse. I undertook training to become an ADHD coach. A step which allowed me to reconnect with my strengths.

I began writing, I delved into what it means to be who I am through the eyes of others like me, and with each discovery I was able to slowly start shedding shame. 

The final key was connecting the mind and body back together, through mediation, sensory adjustments, and nervous system regulation.

The only external help I had in the final phase was the first therapy in my life that has helped me – what I deem to be strictly Rogerian narrative therapy. 

These were the conditions I needed to rediscover the person underneath.

The Self-Actualized Neuroqueer Person

There is good news, it took me just over a year to reach what I deem to be an almost self-actualized state of existence. I am happy with who I am now, I feel more coherent – I am nearly swimming freely in ‘the river of integration’.

There are a few vital things to discuss here – the importance of keeping the body’s score at zero – which means demasking as best you can, and allowing yourself to feel your feelings fully at the time they occur. 

I also discuss the fragility of self-determination for those of us who have been imprinted at a young age with the pattern of behaviourism, and the threat of extrinsic motivation to what I enjoy. 

Finally I round out the book with a more philosophical look at what it means to be a person at a core level, with the key lessons I have about making your own path. I have hope for the future now, and I believe that none of us must exist in a state of measured observation.

I like to refer to myself now as an emotional octopus – and I will explain exactly what that means and why.

Autistic behaviour neurohormone cheatsheet and why the ocean is good for me.

The suppression of natural stims -> escalating stress and unhappiness -> having a 'tantrum' in public a lot -> being chastised for that and stopping -> intestinal issues and alexithymia.

You can retarget stims to safer ones, but they need to do the same thing neurohormonally.

Nothing worse than your parents hitting you up for tantrums (meltdowns) so you start running away to do them also. This is exactly what happened to me. They made out like I was trying to run away from home because I hated them, I was trying to regulate, I didn't know this.

I mean on some level I did hate them, because they were antagonising me to make me run away. I never used to coke bottle on the way home from school when I had to walk home, because I had time to just do my own stuff. Like go on swings… Except if I was bullied on the way home.

School just causes so much internal pressure, if you don't have a safe and friendly way to blow that off you will explode. I needed my autonomy – time to do what I wanted.

Crying is a way to release excess hormones. This is done usually in conjunction with vagus nerve stimulation by beating the ground or screaming. It’s actually really smart to release mass stress. Sometimes we hit our heads too. I think this is to help me cry if I can’t.

For me:
Running and flapping = generating GABA helps regulating
Screaming or humming = activating the vagus nerve for transportation, generating serotonin for happiness
Closing eyes and crying = stopping norepinephrine flooding and releasing all excess hormones
Light touch here (stroking) = generating arginine vasopressin (the fear hormone), causing aggression
Deep touch (bashing hands, strong pressure, or sucking fingers) = generating oxytocin for soothing

Autistic kids are masters of self-regulating. Leave them alone.

A meltdown can trigger a hyperplastic pivotal mental state in the brain. When this happens they will:
1. Become more enlightened with the right support, and more loving.
2. Embed bad patterns that cause background anxiety aka “masking”, or aggressive.

Treat your Autistic child with unconditional positive regard. The world can become super traumatic to us due to our sensitivities, we get pushed past our limits too often, and pivotal mental states can cause very significant brain changes that can be highly negative.

If we can’t regulate and have been masking. We can get stuck in a state where neurohormones are constantly flooding us. All our sensitivities are amplified. We cannot regain control. This is a result of critical levels of “toxic shame” that is unprocessed in our nervous system. Autistic Burnout major.

There is no therapy for being Autistic. There is increasing acceptance. I still can’t regulate properly because I constantly fight up against toxic shame about the way I need to regulate. This is the worst Catch-22 of late identification.

One of the best ones my parents figured out (specifically my Dad) was spending time in the ocean. It must not be crowded though. It gives us dopamine – deep breathing, serotonin – from the sound of the ocean, vagus nerve stimulation – from the cold water, magnesium for deep sleep – from the salt water, and oxytocin – from the pressure as it’s like a blanket, GABA – also through exercise. Oh it might also have melatonin.

The ocean is soothing to us because it provides so much regulation for us. Seaweed sucks though lol.

I never sleep better than after a swim in the ocean. It’s always the best sleep.

Can’t believe how true this joke is:

Originally tweeted by Rory – ADHD Autistic OCD (@roryreckons) on November 28, 2021.

Pivotal Mental States and the role of Serotonin in Crohn’s Disease

Pivotal Mental States… why didn't I make this connection.

Autistic people are more often exposed to pivotal mental states. That causes a period of hyperplasticity. Meltdowns are probably related to this… They can go very wrong too.

High stress makes you reach a breaking point – at that point your brain enters a hyperplastic state – if it’s in a supportive environment it can override negative beliefs about yourself, but in a negative one it wires in really bad ones.

Deep learning is stuff that happens in the subconscious. The messages we internalise in this hyperplastic state can dictate a lot of our behaviour. I think 'Masking' can be directly related to us hitting these all the time.

We not only change fundamental things about who we are in this hyperplastic state, but we encourage our brain to help us reduce the connection to memories that are incongruent.

If you are in a fear state during hyperplasiticity you can wire in so many awful things about yourself, your brain uses these patterns to help inform new behaviour to protect yourself, but it's actually erasing who you are.

‘Suggestibility’ in hyperfocus hangover might be explained by this too.

This is what happens to me, my brain is basically burnt out and people can talk to me and my subconscious brain is just taking direction without me even realising. My wife gives me instructions and I act on them without even thinking. There's no cognition on my part.

When I was on Venlafaxine I was in a permanent hyperplastic state I had no control over and I was just overwhelmed merely moving due to the effects of brain zaps and brain fog. I couldn't meltdown because I was numb. This is what happened… ugh.

This medication actually messed me up really badly. I internalised so many awful messages about myself for the two months I was on it.

It was overloading my norepinephrine and serotonin receptors constantly. I think I metabolise fast and was rebounding constantly.

Oh right… I always metabolise fast… I always have.

I have extremely high drug tolerance too, and this destroyed me on the lowest dose.

The main thing SSRIs did for me was slow my metabolism… I need to look into this effect now. A lightbulb just went on.

This isn’t to be fatphobic how I look here is fine also but I want to talk about this. I was 115kg on high dose SSRIs (sertraline). When I went off SSRIs I dropped down to 75kg and I maintain with no problems. I had an excess of serotonin always.

95% of serotonin is stored in the gut. It must have a role in metabolism.

Because I had so much I had to eat so much… I was always hungry. I think my brain thought I didn’t have enough food. I have Crohn’s disease.

When I brought my dopamine and serotonin levels back in line in the gut and ALSO eliminated sound stress (sound has a link to serotonin production). I am in remission… 🤯

Can’t really explain how much this one thing messed up the last ten years of my life.

Originally tweeted by Rory – ADHD Autistic OCD (@roryreckons) on November 27, 2021.

The unifying theory of self-determined perceptive interpersonal neurobiology

Six months ago I started trying to figure out how neurotransmitters and neuropeptides / neurohormones / neurochemicals worked. I know now, but the problem for so long was looking at the individual in isolation, rather than the individual as part of the environment also.

The reason why so much stuff isn't understood is because we think these work independent of external systems, but they are a response to a larger system as well as individual. You cannot split one from the other. The nervous system is massively involved too.

Health is a holistic issue. This was a pretty massive moment for me figuring out what everything does, and how it works because almost all of the scientists in these fields are looking at one potential effect rather than all the effects that moderate the interactions.

Crying is leaking hormones.
Hormones are generated based on:
Light, Sound, Touch, Smell, Taste.

There’s another two senses I will say also:
Social. We have a social sense.
Self-Determinism. The sense of being in control of our lives.

When these senses needs are not met, we are flooded or deprived of certain neurohormones. That is the basis of mental health.

You can regulate neurohormones in a lot of ways – but you need to work out how all these senses are currently being dysregulated and to make adjustments. You can't fix a lot of these problems with pills or diets, there is underlying stuff that has to be addressed also.

The body keeps the score – that part is true – but the specific part of the body keeping the score is our messaging system – our nervous system. I would go as far to say that our nervous system is our consciousness. Our brain is a storage facility for previous interactions.

No single nerve may be more important due to the way it seems to work than our vagus nerve. Vagal tone appears to one of the most important sense tools – it controls 'interoception' what our body is telling us – the basis of emotion, hot/cold, urination, defecation.

The unifying theory of self-determined perceptive interpersonal neurobiology.

The body-mind duality was a myth.

But the individual-community duality is also a myth.

After figuring this out, I feel more integrated with the world generally. Identity is always shared with the world around you, it never exists in isolation.

I would also argue that the social sense for a lot of us is more than just our own species, it's any 'living' thing. What you define as living is probably what defines your capacity to feel, but I think everything is connected.

Ever solve the problem of your life with a unifying understanding of how and why everything was so hard?

I used to believe in determinism, and I still do to an extent. We have as much control in our world as blood cells do within our own body. Determined by the larger system.

RIP Leela Bearded Lady Legend

TW / pet death

20/4/2009 – 27/11/2021

Nothing is more heartbreaking than: The Dog Paradox

Thank you for every moment we had together.

Thank you for taking care of Mum for me when I was not around.

Thank you for always running with the joy of a young puppy.

Image

Thank you for being the best friend and guiding me by letting me know if things were not ok.

Thank you for the runs on the beach, and the time spent playing with your piggies.

Thank you for protecting us from everyone so diligently.

Thank you for looking after the cats and treating them with kindness.

I will miss you. I know you have returned to nature now and I will grieve you for the rest of my life as I do all the animals that have touched my life.

I know you held on for as long as you could so I would be strong enough when this finally happened. Thank you for giving me the time.

I love you. I always will.

I was glad I got to be there in the end.

Image

May you play with piggies again in your next life.