Life Story: planning and further notes
Parts five, six and seven of my life story
Started writing on the 23rd of May
David: Okay, so here we are. I’m sick and a university drop out. I have a part time job tutoring, but I don’t have many hours of work per week.
I don’t know how best to tell this story.
Sally: Well how do you want to tell it?
David: I am hoping to take the story from early 2009 through until the start of 2011. Or perhaps until the end of 2011. I haven’t decided yet. Probably I’ll take it through to the end of 2011.
Sally: What do you think that the story will include? Could you give the audience a preview before we start?
David: Yes, I will do that. I will give people a preview.
I think that the story will include…
Having chronic fatigue syndrome. Going to doctors to get advice and guidance. Getting on to welfare. Getting blood tests. Going to friends and family to get advice. Talking to people at church to get advice. Getting advice from books and websites. Trying my best to recover. Attending prayer meetings and asking the elders of my church to pray for me. Visiting physiotherapists. Trying my best to go back to university in 2010, but quitting (again) after the first six weeks of term. Trying everything I could think of to recover my health. A fair bit about my social life. And a little bit about how I passed the time. Still being sick at the end of it all.
Sally: Cool, let us get on with it. When were you first diagnosed with chronic fatigue syndrome and what is it?
David: I can’t quite remember when they first diagnosed me with it. It may have been either Doctor Susie Poon at the Victoria University Student Clinic or perhaps Doctor Amanda Clarke at the Kapiti Youth Support Clinic. I think that it was the former, not the latter. But I might be wrong. She also gave me a medical certificate that allowed me to be eligible for the student allowance while studying only part time. The student allowance is the weekly welfare payment that the government gives you to be able to afford to live while studying. At the time it was worth $190 per week (including accomodation supplement). It isn’t quite enough to live on, but it’s okay. You maybe need to scrape together an extra $50 per week on top of it. I was planning to have a reduced study schedule, so as to conserve energy due to poor health. But I didn’t need to reduce it all that much. But if I reduce it, I could lose the student allowance. So I had to get a medical certificate to be allowed to have a reduced study schedule. And Dr Susie Poon gave me a diagnosis and the medical certificate that I needed so that I could have a reduced study schedule but still be eligible for the student allowance. Another note: I had seen doctors on a number of occasions about things like RSI, and asked for extra time in exams - or it may have been the right to take breaks during exams to rest my wrist and walk around - I had bad wrists. I think that Susie Poon might have been one of the doctors I saw for that issue. They let me take my exams in a spare room sometimes, and I was allowed to take a break every hour to walk around and give my wrists a break. I don’t think that they gave me additional time to work on the exam paper itself, just additional time in the form of walking around to rest and relax my wrists.
By the way, I saw a lot of doctors and physiotherapists (and some other medical professionals) in the time period from late 2006 until 2014. However many of my medical records have either vanished, or weren’t kept in the first place. Or if they were kept, they weren’t mailed to the right place after I went to a new clinic, and so didn’t end up being a part of the records kept with my GP. And in some cases when I went to a clinic for a one off appointment they weren’t forwarded to the right place. Also I saw a lot of physiotherapists and they don’t tend to mail notes to your GP’s clinic. Some of the doctor’s and physiotherapist’s visits I will talk about in my life story don’t have dates or records associated with them. And some visits will have been forgotten altogether.
For example, when I saw Dr Diane Carter at KYS in 2012. Those notes vanished. And the next doctor at KYS too. Their notes vanished as well. And there was one doctor I saw at the Coastal Medical Rooms. I have forgotten his name, I think that it was Dr Paul Davis. Those notes were never collected into my long term records, and seem to have got lost along the way. And my notes from Team Medical in Coastlands, those never got sent anywhere. And I had one set of notes relating to allergy tests in Wellington. Those never got sent anywhere either. And all of my notes from the Victoria University clinic, I can’t seem to get those! They vanished and they won’t give me electronic records, let alone physical records. And so this means that many of my notes aren’t available. I don’t have any notes from Willis Street Physio, Raumati Beach Physio, TBI Physiotherapy (The Back Institute), Nathan Scott* at Team Medical Physio or Victoria University Student Physio. I don’t even have them for my own records or purposes. I am currently trying to get ahold of more of them.
*Nathan Scott: (he was the worship leader at the CCC, his father was the chief elder for a long time).
Anyway, I got a diagnosis. The diagnosis came from either Doctor Susie Poon or Doctor Amanda Clarke.
**
What is it? What is Chronic Fatigue Syndrome (CFS)?
Here is a definition from Google Search:
“Chronic Fatigue Syndrome (CFS), also formally called Myalgic Encephalomyelitis (ME/CFS), is a debilitating and complex long-term medical condition. It is characterized by profound, persistent physical and mental exhaustion that does not improve with rest and severely limits everyday activities.”
For more information, you might try reading the stuff on the other end of these two links. They aren’t the only place to get information about CFS.
https://www.cdc.gov/me-cfs/diagnosis/index.html
https://www.cdc.gov/me-cfs/about/index.html
Sally: Okay, I’ll check it out later.
How do you get diagnosed with CFS?
David: A diagnosis requires at least 3 months of symptoms. You need three months of symptoms, without another better explanation for why you have those symptoms.
You need to have the three following symptoms:
Debilitating Fatigue: Severe tiredness that worsens with physical or mental exertion and is not relieved by rest.
Post-Exertional Malaise (PEM): A delayed worsening of symptoms (often 12–48 hours later) following minor physical or mental effort.
Unrefreshing Sleep: Disturbed sleep, waking up feeling exhausted or stiff, or insomnia.
And you should have at least two or three of the following symptoms:
Brain fog
Skin problems
Digestive issues
Chronic pain
Muscle and joint pain
Sore throat
Problems with thermoregulation
Swollen lymph nodes
Flu like symptoms
Orthstatic problems (you get dizzy)
You also need to get a bunch of blood tests and urine tests to rule out other things. You may wish to see a neurologist, rheumatologist or a sleep specialist to rule out other issues.
To a certain extent it is a diagnosis of exclusion.
And so that is what we did. We diagnosed it after two+ years of poor health. Don’t forget that I used to be fit, healthy and quite strong. Ps: strength is a skill, not just a muscle.
***
The actual causes for my health problems were mostly things like interference and attacks by cell towers and satellites. And I got worn out by other stuff too. Things like the trip to Europe and the USA. And things like too much noise, and plenty of disruption to my sleep. As you well know. I already talked about that stuff earlier.
***
But at the time I felt that glandular fever might have caused it, perhaps indirectly. That was one of my favourite theories.
I thought that maybe I had had glandular fever back in my final year of high school (or a different virus, I did get sick a few times in my final year of school). And then I didn’t get enough rest or recuperation once I’d had it. And that is supposed sometimes to cause ongoing issues. What do I mean by “not enough rest and recuperation”? What I mean is that I had exams, got engaged, had my overseas trip (USA/Europe), worked too hard in my first year university summer holidays, and that I didn’t sleep much during my time living in the Hanson Street apartments (it was my year of “no sleep”), and that this caused me to experience problems. Or at least something like all of that was my theory at the time, that I didn’t get enough rest, and that it made the glandular fever “stick” somehow, or otherwise stay active. Anyway, that was one of my theories as to why I was so unwell.
I also had experienced some “inklings” of health issues back in 7th form too (waves of fatigue, which I had reported to my GP, as mentioned elsewhere). And lastly I also had blood tests to check for glandular fever antibodies, which came back positive. And so this suggested that glandular fever might have been present or otherwise part of the problem.
**
Next, I want to talk about etiology.
“Etiology refers to the scientific study of causation, or the origination of a disease or condition. It identifies the specific root causes, risk factors, or pathogens that lead to a particular health issue, answering the fundamental question of why an illness or abnormal condition occurs.”
What is the etiology of CFS? At least on paper?
Back then, when I read about CFS, there was no proper or suitable explanation for what causes CFS or why it happens. It was unexplained. Or not explained well enough to be satisfying. There was no proper etiology.
To me it seemed like a label without a clear explanation of why you’re sick. This will be a big part of my story.
I felt at the time that the diagnosis of CFS is basically a way of saying, “you’re really unwell and we don’t know why”. “You have all of these symptoms, and we don’t know why you have them. And we don’t know what the true underlying causes of your symptoms are. And so we’re slapping this useless label on you.” And the only truly useful part of it is that it helps you to get on welfare.
Speaking of welfare, I was eligible for the sickness benefit, and so I signed up for that. Amanda was also included in that, because we were a married couple. This meant that she could keep studying even though I had dropped out and was receiving welfare.
And so I basically viewed it as a label. A label where it doesn’t tell you what is wrong, just that there is something wrong. They just put you in that category. All other actual causes have been ruled out, and you just have an empty label now. But it’s the label you have got.
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A brief note on my symptoms, health and overall wellbeing in 2009, 2010, 2011
I was unwell in 2009, 2010 and 2011. I had a lot of symptoms. I’m just saying that I was sick for those three years! And that I had a lot of symptoms. But I don’t want to have to talk about it at length right now.
I’ll just come back to it later.
Sally: You don’t want to talk about it now?
David: No, I will come back to it later. I was unwell, and worse in 2009, 2010, 2011.
****
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Anyway…
I had been diagnosed with chronic fatigue syndrome (CFS). And so I set out to fix the problem and become healthy again.
The mainstream medical approach to solving this problem was the most important one for me at the time. At the time, I still trusted doctors and I wanted to give them a chance to help me figure this out and solve it. I wanted to do it “by the book”. And so I talked to my doctor, Amanda Clarke. I asked her for help. I wanted to know “what is wrong with me”, “what are the underlying causes of it”, and “how can I recover”, aka “what can I do about it”. I talked to her about my life and all of my health problems. And I asked her to help me.
I saw Dr Amanda Clarke many times, she was my regular GP in Paraparaumu. She worked at the local free youth clinic, Kapiti Youth Support (KYS).
Sally: How did you end up seeing her?
David: The first two times I went to KYS I just needed some condoms (KYS is a free clinic, and condoms are highly subsidised under pharmac, which meant that we could save money). I think that I may have still been registered with the Victoria University Clinic at the time, but KYS was closer and it was during the holidays. We used condoms because Amanda had some nasty reactions to the birth control pill (both types of birth control pill). They made her feel very unwell (allegedly). Getting contraception via the clinic is actually much cheaper, and I wanted to save money (they give you a prescription, and then you get them from the pharmacy, for a flat rate).
And then I decided to use KYS as my main doctor’s clinic (because it was free, and closer to home, and I thought that I might need a clinic outside of the university environment). And I figured that even though I didn’t 100% like the clinic itself, that the doctors were there legitimate doctors all the same. And anyway, so I end up talking to Dr Amanda Clarke about my health problems (chronic fatigue syndrome). I saw her on the second of February, 2009 to talk about things. I really wanted to get things sorted out. I had been feeling a little bit better over summer, but I was still obviously unwell. So I asked her to help me to figure out what was wrong with me and to help me figure out how to solve it.
I told her my full story start to finish. She listened to me talk and then ordered a bunch of blood tests and referred me to a neurologist. She and I thought that it might be chronic fatigue syndrome.
I got the blood tests done. They came back and were fine. The neurology department was reluctant to see me. And sent me a letter denying me an appointment.
I dropped out of university in March because of poor health. I spoke about this in an earlier part of my story.
I went back to her on the 17th of March. I was in the process of dropping out of university at the time. I needed a medical certificate from her to give to the university. I forget exactly what for. Maybe it was to get a refund, and therefore to preserve my scholarship for the next year (I had the “bonded merit” scholarship from the Government). And I needed another certificate for the Government welfare office (WINZ) to help me get on to the sickness benefit. I needed two medical certificates, both of which she gave me. She also told me that my blood tests had been completed, and were all totally fine.
The neurology department of Wellington Hospital had denied me an appointment. But Dr Amanda Clarke persisted in trying to get me one, and managed to get me in to see an old university friend of hers who worked in the neurology department of Wellington hospital. Technically he was a GP and not a specialist. But he was in the neurology department. He was kind of like an ersatz neurologist.
And so I saw him a while later.
I managed to sign up for the sickness benefit (which strangely enough can be a bit difficult sometimes, if you have CFS. For example, one of my friends Jesse Orchard sometimes had difficulties with his welfare benefits, and he had CFS too, allegedly).
I then saw Doctor David Waite at the neurology department of Wellington hospital. I saw him once on the first of May and once again a month or two later. And then again in August.
I saw him two times (I think). Or maybe it was three times.
We talked for a while, and I told him my whole story start to finish. He did a range of neurological tests. For example, he tested things like my eye sight and reflexes. And he ordered same more blood tests. He then prescribed me amitriptyline. His suggestion was that I take a tiny dose of amitriptyline. He told me to break the pill into pieces, and have a quarter of a pill. He told me that it was an almost “homeopathic” dose. I was supposed to take it just before bed, to “help me sleep better”. He pretended that it was a sleep boosting pill, to improve sleep quality. I didn’t need antidepressants though. I needed the truth. He knew what was causing my health problems.
I saw him a second time. The neurologist had ordered a bunch of blood tests last time. Which all came back normal. I don’t know if he ordered one or two bunches of blood tests: but they came back normal. I asked him whether or not we were going to do any scans? I wanted scans on my brain to see if there were any neurological causes for the problems I had. He told me that he didn’t think that we needed to stick my head into a brain scanner. On our second appointment, I told him that I was buying a new bed. I thought that a large, high quality bed would make my life better (it didn’t). He really wanted me to take amitriptyline. It was supposed to help me sleep at night. I was supposed to take one pill, split it apart. And take the tiniest dose. I told him that I don’t like anti depressants, and that I wasn’t depressed. And that anti depressants cause me problems. But he insisted. He told me that it was an almost “homeopathic” dose of an antidepressant and that it wouldn’t cause me problems. And it was for sleep. I wasn’t convinced. But I ended up taking it for a bit. But it didn’t do me any good (I don’t think it did me any harm either, physically given that the dosage was so low). I think I left the prescription unfilled for the longest time before even trying it at all. And after trying it for a while I quit (I don’t think that it did me any harm, I just don’t like taking anti depressants).
At the time I felt that he should have referred me up to an actual specialist, an actual neurologist. He was kind of like a “neurologist lite”. Not a proper specialist. And I wanted to see a proper specialist and to get things like brain scans done so that I could figure out what was wrong with me. But he didn’t want to send me to someone higher up in the food chain. His role was that he was a general practitioner, but also a gate keeper for the higher ups in the neurology department of Wellington Hospital. And as for all of the other tests and stuff coming back “normal”, he felt that the attitude should be one of “no news is good news”. And if we can’t find anything bad or wrong with me, then that’s good. And that if we can’t find anything wrong, then I should be grateful. But I wanted to find something wrong with me, so that I could finally know what the cause of the problems was, and therefore fix it. To me, no news wasn’t good news. I needed answers.
He also said something confusing about the story Heidi and the Swiss alps. And how maybe I needed some time in the mountains like her to recover. I think that this was a cryptic statement (how else did he know that I loved Switzerland and also the book Heidi?).
I can’t remember exactly how many visits I had to see that particular doctor. I saw him either two or three times. I have checked my medical notes, but the notes are unclear (I didn’t know that typed medical notes could be so dis-organised!)
Sally: Okay, that is fine. Don’t worry about the fact that the notes are very messy and hard to use. And that you don’t have perfect information. Just get the overall story across to me.
**
David: I want to talk to you about the book “I'm Not Crazy, I'm Just a Little Unwell: My Journey Through Chronic Fatigue Syndrome by Leigh Hatcher”.
Sally: What is it about?
David: I'll just give you the synopsis, from goodreads. Here it is:
Goodreads
"One day in January 1998, Leigh Hatcher lay down for a ten minute afternoon nap and woke two hours later feeling as if he'd been run over by a truck. Without warning, he'd plunged into a health crisis that was as devastating as it was mysterious.
One of Australia's best-known television journalists vanished overnight from people's TV screens. He fell into a wilderness of pain, exhaustion and confusion that defied medical diagnosis. Finally, after a year, the verdict came in: chronc fatigue syndrome, or CFS. An illness that many said didn't really exist at all.
In this passionate account, Leigh Hatcher describes the acute physical suffering and huge personal losses of his battle with chronic fatigue. He speaks frankly about the hurt and betrayal he felt when people questioned whether the illness was 'all in his mind'. He reveals the reserves of personal strength and faith that guided his way through the wilderness and taught him invaluable new lessons about life. And he details the thrilling discovery that unlocked his health once again. Leigh's story will bring comfort to all those suffering with CFS, and will show others how to accept, love, and support anyone who is wrestling with this 'multi-headed beast'."
One of the things that he used in that book was a glucose tolerance test, the multiple hour version. And he found a metabolic fault connected with his liver. And then to cure it he did a low GI diet with frequent meals and snacks, to regulate energy and restore his health. He recovered very quickly. (Uhhh. The book is all lies, in hindsight).
I found it in someone else's car. It was just sitting in one of the backseat pockets of Jesse Orchard's car, and I discovered it there, and so I started reading it. It was just one of those situations where you just read a few pages each time you are in the car, and end up getting interested. After a couple of car trips I found it interesting enough that I asked to borrow it, and then finished reading it. [[Jesse Orchard “had” CFS as well, and was quite sick, and unable to work and had to go on to welfare. But that’s a whole other story.]]
I then got my hopes up a bit, thinking and feeling that "this might be the answer". And so I asked my doctor to do the GTT (Glucose Tolerance Test), the multi hour version. Just like in the book.
She ordered that test for me, and I got it done. It involved going to the blood test place, getting blood drawn, then drinking a small bottle of super sugary water, and then waiting an hour, and then getting your blood sugar tested, and then waiting another hour, and getting it tested again. It was supposed to see if something was wrong. And if it was wrong, then the idea (from the book) was that I could regulate my eating according to frequent meals and snacks (every 2.5 hours) to fix my energy and health problem. Which really were quite bad.
But anyway, this thing which I put a lot of hope in turned out to not really help me at all. And I did get my hopes up quite a bit. The test didn’t come back telling me that anything was wrong. So the whole thing led to nothing.
Don’t forget that I am basically feeling like I have been hit by a bus much of the time in 2009. I’m exhausted and miserable. I can’t sleep properly, and also I’m just inexplicably cold a lot of the time too. My body just doesn’t work! I’m sicker than I was in 2007 and 2008. It’s awful.
**
And then I had some more medical appointments with Amanda Clarke. I think I saw her four times in 2009 in total. She ordered more tests. All of which came back normal. We did so many blood tests. But we weren’t really getting anywhere.
The summer of 2009/2010 wasn’t so bad. It was nice and sunny. The warm weather was doing me some good and I was feeling a little bit better. But I was still not all that well. The idea was that I should be able to return to study in 2010. And again I had lined up a slightly reduced course of study. And I was ready to get into it. And I had sorted out all of the paper work. Truth be told, I wasn’t really ready to be heading back. But I was heading back anyway.
A little while before university started I went to a prayer meeting or two, and had people pray for me. These were at a local Pentecostal church. David Orchard (I have mentioned him previously) claimed to have been miraculously healed of his chronic fatigue syndrome at a pentecostal church’s healing meeting up in Auckland, so I thought that I would try going to a similar meeting here in Kapiti. Also, my father had claimed that his knee had been “miraculously healed” at a healing meeting when he was about twenty (the story of that is that he got a cyst on his knee, and then had surgery, and then couldn’t walk after surgery, and rehabilitation was a mess, and he couldn’t bend his leg, and he always walked with a straight leg, he hobbled. And his leg would buckle sometimes. And he had lost so much muscle on that leg. He had also become somewhat depressed and was had dropped out of university, or something. But then he miraculously came right after a healing meeting. I think it was a “mind-body” issue, mediated by psychosomatic stuff. As for what caused the cyst: when I was young, he attributed the formation of the massive cyst to jumping off of sand cliffs at the beach, or falling down gulleys and that started the base injury, and it grew from there. IMHO, I think those two incidents are part of it, but that another major issue was that he ran too much; overuse. Also, the surgery involved scraping a lot of cartilage out along with the goo. Furthermore, this ruined his sporting ambitions. He wanted to be on the international junior representative team for NZ table tennis, and was an avid runner). And I thought that if it had worked for my father and David Orchard that I would be foolish not to try. Also, I was often praying to ask God to heal me and restore my health to me. I had no idea why I was sick.
Anyway, the deal with Pentecostal miraculous healing is that you have to have faith. Faith first, healing later. So they prayed for me, and I tried to have faith. I tried very hard to have faith that I would be healed. And for a while I felt that things were looking up. I tried to trick myself into thinking that if I just had enough faith, that I might recover. It’s sad in hindsight, but such is life.
There was a verse about needing faith to be able to be healed, but I can’t remember what it was. I think that it may have been “And the prayer _offered in faith_ will make the sick person well; the Lord will raise them up. If they have sinned, they will be forgiven”. The idea is that you have to have faith before you are healed. And if you don’t have enough faith, you won’t be healed.
I had also had some Alexander Technique lessons in the few weeks before term started, which greatly relieved tension in my neck and back. Those were with a woman by the name of Teresa Neches.
But anyway, I went back to university. I did this even though I wasn’t feeling 100% well. I convinced myself into thinking I was well enough to be back at university (because of the Christian/pentecostal healing meeting thing; I had to have faith, remember?). But I basically wasn’t managing with university right from day one. I skipped classes right from the start, I didn’t manage to get the right textbooks. Everything was disorganised. I had issues with my wrist as well. And then the symptoms kinda hit again. Well, more of them. It happened about 6 weeks into term. I got hit with proper waves of fatigue, feelings of weakness. And a generalised feeling of wrongness (this was probably the stuff they do which messes with your posture - I think that they call it “stress him”, or “squash him” - but I actually don’t much care what they call it, it’s daft anyway, and it is horrible). They tightened up my back a bit more. I just felt bad again. This happened at the start of the mid term break. I thought it over for a bit. And then I decided to quit. By the way, when I was studying, it was just part time study. Only two papers. I wanted to get as much of a refund as possible. And the earlier you quit, the more of a refund you get. And so I just quit. It’s not like I was coping anyway. I had to admit that my case of chronic fatigue syndrome hasn’t resolved itself, and I was still unwell. And then I went back on to the sickness benefit. Amanda was included on the sickness benefit as well (she was in her honours year).
And it was quite sad that I had to quit. But when the symptoms came back (properly) in the mid term break, then I knew that I hadn’t recovered. I knew that I was still unwell. I had to admit to myself that having faith, or believing that I had been given supernatural healing or something like it, hadn’t worked. I had to acknowledge that it hadn’t worked. I hadn’t been healed. I hadn’t been healed by God. You are supposed to “claim the healing” and act like you’ve been healed. And you’re supposed to “claim the healing” before you have actually recovered. And so I had tried to tell myself that I had already been healed, before I knew that I was well. But then after I dropped out of university I had to admit that it wasn’t true. I was still sick and I hadn’t been healed.
I wasn’t really well enough to manage in the first place. And it was wishful thinking to believe that I was well enough.
I apologise for the paragraph just above, I know that it is a little bit clunky and also repetitive, and there is a lot of religious stuff. But I used to be very religious. And perhaps repetition is the best way to get things across. So I’m leaving it in there
Sally: So you believed in instantaneous supernatural miraculous healing?
David: Yes. I did.
Also, I used to pray very often, asking God to heal me of my health problems. And I used to wonder why he didn’t heal me of my heath problems. It didn’t make sense to me at all.
**
David: And that is how I dropped out of university for the second time.
Sally: That is really sad. You had to drop out again.
David: Yes, it was horrible. I just couldn’t manage.
I was unwell, and it was miserable. I just couldn’t do anything in life.
The things that mattered to me, and the feelings of forward momentum that I had were gone. My intelligence was such an important part of my identity, and so was my academic performance and my ability to get good marks.
**
And now let us talk about 2010.
I didn’t feel well in 2010. I had lots of symptoms. I don’t feel like going into it.
Sally: please do tell tell me about your symptoms. What was your health like. That’s what we are here for after all.
David: Yes okay. I’ll tell you about my symptoms.
I had all sorts of symptoms.
I experienced fatigue.
I was exhausted, tired all of the time.
I had very poor sleep quality.
I had post exertional malaise.
I had back pain.
I had bad digestion.
I had the full range of cfs symptoms.
I had brain fog, temperature dysregulation.
Food sensitivities: gluten intolerance (but I think they might have done that with satellites, giving me symptoms that correlated with consumption of gluten containing grains)
Flu-like Feelings: chills, and night sweats.
And night time hungry attacks.
I felt unwell, and exhausted and I was often unnaturally cold. I had massive problems with trying to stay warm. I think that they kept blasting me with cold rays, but I can’t prove it. The hot/cold thing was actually a huge issue. I had found that the only way to try stay warm was to light the fireplace.
I just wasn’t that well.
It is really difficult to explain it properly, because it was three years worth of symptoms. But I just wasn’t well. I was exhausted and suffered from debilitating fatigue. I had back problems and digestive problems (very hard dry stool, and I was very constipated, it was horrible). And I didn’t have high quality sleep. I was just very unwell. My life was hard. And I had post exertional malaise. The whole situation was horrible. The debilitating fatigue was the worst bit, the inability to exercise or to benefit from it was the second biggest problem (I needed exercise, but couldn’t get it). My back problems were the third biggest problem. And fourthly my digestion was a massive problem (I had stool digging into my abdomen). I was pretty miserable. The whole situation was pretty debilitating.
But on the whole it was pretty bad. Can you just take it as a given that I was unwell, but that perhaps I won’t do a very good job of explaining it?
Sally: Sure, that sounds okay to me. You were unwell.
Here is an example. My back was so bad that getting together with my friends in 2010 to play Catan was a problem. This is at the age of 21. I actually used to get back problems so bad that I would start sweating. My spine would hurt, I would experience strain and stress in my back chest and spine, and it would be so bad that I would start sweating profusely sweat. It was horrible. It got even worse when I was 22.
Sally: You couldn’t even play board games? That’s appalling!? They must have been doing so much to your back to make that happen. They must have been doing so much stuff to your back with the satellites and cell towers?
David: I guess so.
They also did it with church attendance. I couldn’t just sit in church to listen to sermons and listen to music. They gave me back problems and breathing issues. I had pain at t1 and t2. I also used to get “mid back pain” which was just at the back of the bottom of the rib cage, from trying to sit upright. And also I used to get freezing cold while sitting there. And had issues with circulation. And I had a freezing cold nose, and fingers. I had circulation issues. And had to keep on taking off clothes and putting them back on again. My warm jacket I mean. Because I would be freezing cold, and then I’d put on my jacket. And then I’d get hot and prickly, and sweat and be too warm. And then take it off again. I couldn’t sing in church, because of the back and breathing issues. My back hurt. And I had to keep on going to get water from the kitchen mid service. Sometimes I would take a cup of water into the service with me, because I couldn’t stay cool or hydrated. I was always popping out to the kitchen for water, or the bathroom to use the toilet. Because I always needed either water or the toilet. Weird.
Someone eventually installed a water dispenser outside the kitchen, with paper cups. So that people didn’t have to raid the kitchen. And I always wondered if that was put there for me.
I couldn’t even just go to church and sit through a service. It’s crazy! I eventually had to give up on attendance. I can’t remember which year this was. I think it was 2010? But maybe even there was a bit of it in 2009. In 2011 I had stopped going? I wish I could remember exactly when things happened.
I fought to keep on attending. But I had to give up eventually.
**
David: I want to talk a little bit more about my doctor Amanda Clarke.
In 2010, she started to get weird about giving me medical certificates for chronic fatigue syndrome. It was odd. I needed those certificates for getting welfare so that Amanda and I could afford to eat and pay the bills. Also, she wanted to push me off to a new doctor. She kept on telling me to get second opinions from other doctors at the clinic. She didn’t want to give me more medical certificates. She seemed to be worried about what WINZ would think.
My point of view was that she was my doctor, and that it was her responsibility to do her job and give me medical certificates for the sickness benefit. And that also it was her responsibility to help me to recover.
She claimed that she was getting frustrated, and also she seemed frustrated in her demeanour. And you can see it in the medical notes too.
Another thing is that she wanted me to go to a psychologist to do CBT. I wasn’t happy about that. She kept on suggesting it. The idea behind CBT is that they persuade you to think that your thoughts about your health are just “limiting beliefs” and that you just need to do exercise and be conditioned to believe that you can do it. Anyway, I didn’t want to see a psychologist. Psychologists are nonsensical, and also to see one would suggest that I was suffering from an illness with psychological causes, not physical causes, but I knew that I was suffering from a physical illness.
And later she wanted me to take amitriptyline (again). But it doesn’t make sense for me to take anti depressants. I wasn’t depressed, I was physically unwell. And also anti depressants make me violently suicidal, and I had told both Amanda Clarke and David Waite this. And to suggest anti depressants is to imply that someone is mentally ill (even if you claim that the anti depressants are for a different cause, which Amanda Clarke did). This wouldn’t be the only time that my doctors have done that by the way. When later on they prescribed nortryptaline, they said it was for back pain. I had gone in for back pain and chronic pain, and they gave me antidepressants, telling me that they were ideal for reducing back pain. But that was in 2013.
Anyways, I kept seeing her. For multiple visits.
Next, at a later appointment, she told me to try amitriptyline yet again and got annoyed at me for not doing it. And again tried to get me to see a psychologist. The psychologist would have been funded by WINZ (psychologists are expensive!).
She also kept on pushing me to increase my levels of physical activity. As though that was what I needed. But physical activity made me worse. Much worse. And also, I had read things online about chronic fatigue syndrome which said that to increase activity and to “push through” can be really unhealthy. It was quite controversial online.
**
I went to another appointment on the 4th October 2010 (sorry if this seems weird to mention individual doctors appointments), but I’m just picking out entries from my medical notes).
And then she told me to take amitriptalyne yet again. She was really pushing it. Which was frustrating! Why should they be pushing anti depressants and psychologists visits on someone with a physical illness and physical symptoms. The implication is that she was suggesting that my health problems had no physical basis, and that there was therefore no reason for me to be unwell, and that therefore the causes were psychological. Perhaps that it was a psychosomatic illness. __This becomes an important part of the overall story__ (my father’s attitude was similar by the way - that the causes were psychological, and/or all in my head, and that I just needed to go for a “good run” or a swim).
Sally: So your doctor basically told you that it was a psychological problem, not a physical problem? What I mean is that did she say it without saying it?
David: Yes, she said it without saying it, that it was psychological in causation and origin. It obviously wasn’t. It was caused by cell towers and satellites. Not that I knew it at the time.
Also, she was aware of the actual underlying causes. I.e. satellites and cell towers. But wasn’t willing to tell me.
My father drove me to one of the appointments at KYS. I didn’t have transport from home to the doctor’s clinic. I am only mentioning that so that people can see and understand that my father was still a significant part of my life. And that we still saw one another. And that he was still part of ongoing conversations with me about my health.
We both sat at the clinic talking about my health. And he was dismissive of my problems. But I was still talking to him about my health… he just acted like there was nothing massively wrong.
He asked me, what do you *feel* just sitting there. He basically knew what was wrong with me. But he felt that if there was no symptoms hitting me then, that it didn’t really matter. I think he was out of touch. And he actually could have just told me, right then and there.
And then made a metaphor, or analogy. About children and putting toys away. Which I think was a cryptic statement. I’ll flesh it out now. There was a child there, playing with the toys. And his mother was telling the child to put the toys away. And he was dragging his feet.
And we discussed whether it was better for the mother to help the child, or to order the child to do it. Or to put the toys away herself. I think we may have concluded that it was better to just help the child.
I think that he was just hinting at something. I’m not sure how important it was. But I think that it might have been a cryptic statement.
**
Then I ended up seeing Dr Peter Roberts. This was in mid October, 2010, I think.
I saw him because a friend mentioned him (Jesse and David Orchard). Apparently he was absolutely the best doctor around for CFS. He knew all about it (or so I was told). I wasn’t convinced. But he was the only doctor who took an interest in it. He was the doctor who knew best about CFS in the greater Wellington region. He was the closest thing to a specialist there was. Also, he worked at Wellington hospital in the outpatient clinic. I will repeat that, he worked at Wellington Hospital at the outpatient clinic. Which meant that I had to travel from Raumati Beach in Paraparaumu to Wellington Hospital in Newtown, Wellington, which is about 60 minutes away by car (depending on traffic) or about 2-3 hours away by public transportation. So anyone who asks me, “why didn’t you go to the hospital?”, the answer is that I did go to the hospital. I saw three doctors at Wellington hospital. And I spent one night at Bowen Hospital for a sleep study (Bowen Hospital is a private hospital in the Wellington Area). Btw, the outpatient wing of the Wellington hospital is just through the lobby and then turn left. The respiratory clinic is to your right when you go through the front door, so is neurology. The part of the hospital where Amanda’s Nana went when she had a stroke was a bit deeper into the hospital.
And so my doctor got me in to see him. She had to try multiple times to get me in there to see Dr Peter Roberts in the outpatient clinic.
__I told my whole story start-to-finish.__
He wasn’t actually all that great (I think that he was and is a dishonest and bad guy all along - more about that later).
He suggested that I start taking vitamin D. And that I had to get more sun, for the vitamin D. He thought that the Europe trip meant that I was behind on sunlight and vitamin D.
And I told him about all sorts of random symptoms, like waking up at night freezing cold, and ravenously hungry. And only if I ate could I warm back up. I also told him all about the thermregulation symptoms. Oh wait, I told him about tons and tons of symptoms and problems.In almost forgot to mention that. At length. I explained things at length. And fatigue, exhaustion, sleep quality and post exertional malaise were the main issues. But anyway, I’m now talking about the random other symptoms. And then I will talk about GET (sort of) (Graded Exercise Therapy).
The waking up at night symptom. Where I wake up and I experience massive hunger, and I’m freezing cold, and I can’t sleep. This happened often. Now he wasn’t sure what caused that. His theory was that the reason I woke up at night like that, shivering and cold, was blood sugar. And so he suggested that I check blood sugar, but that I do it frequently and log the information in spreadsheet. So that I can see if there is a correlation or connection between blood sugar and symptoms. He gave me a prescription for an accucheck reader, some testing strips and a sharp lance thing that clicks. And I did what I was told, faithfully keeping records. To send to him for analysis later (I sent them in an email I think).
He also had me do blood tests, but nothing came of it. And he also asked me to send him a letter or email, instead of coming in for an appointment. To give him some updates. I must have seen him 3-4 times. And tbh, going into Wellington hospital just to see a guy about cfs who wasn’t even any good, it wasn’t great. He was supposed to be “the guy”. He was supposed to be like a specialist in cfs. But he sucked.
What else? He (and Amanda Clarke) wanted me to increase my physical activity levels. Even when I felt bad. And had symptoms. And even when it caused “post exertional malaise”. We will talk about that now.
There was this theory at the time that the way to “fight” and to recover from CFS was to do “Graded Exercise Therapy”. The way that that worked was that you set a level of exercise that you need to do. And you do that for 2-4 weeks. And then you bump it up a bit. And do that for 2-4 weeks and so forth. Until you’ve improved fitness and health. And this was to by accompanied by CBT. CBT (cognitive behavioural is a psychological approach that helps you to recognise and reassess psychological limitations). I wasn’t happy about this. Because these ignored that I had physical symptoms. And pretended it was just a psychosomatic case. Furthermore, there was advice online which suggested that the best approach might be “pacing” and keeping records of symptoms.
My grandparents drove me to one or two of these appointments, to see Dr Peter Roberts (the “specialist” for CFS). This shows that they knew I was fighting to recover. And they could have just told me what was wrong. I even stayed the night at their place before my appointment. I was actually struggling with basic things like attending appointments at that time. I was unwell! I also missed an appointment with Doctor Peter Roberts due to having the flu. And had to rebook it. But I think the “flu” was actually induced. Actually, it was an appointment with the respiratory clinic and Doctor Alister Neill. That comes later.
My grandparents even put me on their church’s prayer list, so that people would pray for my recovery from CFS.
My father also drove me to one or two of the appointment, to see Dr Roberts. This means that my father could have told me what was wrong and why I was unwell.
**
Sleep specialist and sleep study
Next I saw a sleep specialist. His name was Dr Alister Neill. Actually, he is a professor. I sometimes don’t know which title to use, professor or doctor. Professor Alister Neill is a Respiratory Medicine specialist in Crofton Downs, Wellington, New Zealand. But he actually works as a sleep specialist. I had been trying to get an appointment with one for a while, so that I could rule out sleep problems. Or perhaps figure out what was wrong with me. I ended up seeing him, and then getting a sleep study done. He is a fairly prominent specialist in the field. I had an appointment to see him, and we then had the overnight sleep study, and I then saw him again for a short consultation afterwards. At least this is how I remember it.
Here is his bio, pulled from a medical website (Research Gate):
“Alister Neill is a Professor in the Department of Medicine (Wellington), University of Otago and directs the WellSleep Centre. My interests include the Epidemiology & ethnic distribution of obstructive sleep apnoea (OSA) in New Zealand, relationship to cardiovascular disease, evaluation of new treatment technologies, sleep assessment pathways, risks of drowsiness, energy balance in sleep, insomnia, provision of home non-invasive ventilation for respiratory failure.”
I had wanted to see a sleep specialist for ages. I had always felt that the sleep thing may have been massive. Because my sleep was “badly broken” and I didn’t know why? I hadn’t slept properly on a consistent basis since 2006, and I felt that this might have been one of the biggest contributing factors to my declining health. (Also, I had another problem involving waking up and being freezing cold, and unable to get back to sleep until I ate. Which was odd.) I really thought that the sleep study may have held the answers for why I was unwell and what to do about it.
The overnight sleep study was at Bowen Hospital. The sleep study itself involved glueing electrodes to my head to watch my brain while I slept.
My recollections of the sleep study are that I couldn’t sleep that night. The way I remember it is that I was awake all night and I just couldn’t sleep. I tried having a snack, because that sometimes helped me sleep. But that didn’t work. I alternated between trying to sleep and giving up to listen to music. And then they came to collect my apparatus and to unstick the electrodes from my head. They did this at about 6 am. I then went to sleep. I don’t recall sleeping at all during the study itself.
I told them that I didn’t think that they managed to get any good information. But they told me that they had collected a bit of information, and that I had fallen asleep somewhere along the way for a bit. And they measured my sleep then. They said that everything was fine. I think that they may have been lying.
I did have some moments of resting quietly in bed where perhaps I did get some sleep. This was close to the end of the study. If I did fall asleep, then I didn’t fall asleep until the early hours of the morning. And only for a little bit. I hardly slept. And to be honest, I don’t remember sleeping at all! I don’t remember even 5 minutes of sleep before they took the rig and all of the electrodes off. So I don’t know how exactly they got any good information from it… I think that they may have been having me on a little bit (aka being dishonest). But I actually think that I didn’t sleep. And that they lied.
But in the end, the report didn’t show that I had any major problems. Or I wasn’t told about any major problems anyway. I didn’t read the report itself. I just had a quick meeting with the doctor a few weeks later. The meeting was short, I think. But he seemed not to have much of a way to help me. Note: my memories of this whole situation are pretty hazy. I don’t think that I did the full “presentation” where I told him my whole story. Which was a mistake.
Perhaps unrelated: my medical notes have a note in there about ecg palpitations. Strangely enough, these were not mentioned to me in person, but I’m unsure if it is important or not.
Amanda’s Nana drove me to the appointment to see the sleep specialist. This shows that she knew what was wrong and could have just told me what was wrong. But she chose not to.
A slight digression here, but it would have been appropriate for her to have told me what was wrong with my health. I was a part of their family after all. I had married into it. They treated me as family and welcomed me in. I could talk about this later. By the way, my health issues were often a topic of conversation when I was with Amanda’s mother and Nana. And I used to see her family quite a bit more around 2007-2011 when Amanda and I first were married. But eventually I got too sick and decrepit for guests and socialising. Also, I went to Christmas with Amanda’s side of the family, not mine.
And that is enough for now.
**
David: I just want to make a brief mention of the fact that I had some trouble with welfare, the sickness benefit, and having my doctor write up medical certificates. It was sometimes a problem. And my doctor/s insinuated that my rather severe health problems were psychological in origin rather than being physical problems. The prescribed anti depressants, exercise (even though I experienced PEM) and wanted to hire a psychologist for me. And as such, my doctor Amanda Clarke was increasingly reluctant to give me medical certificates to be able to get the sickness benefit.
I should also mention once again that my health problems were caused by satellites and cell towers. And that my doctors and physiotherapists knew it. And could have told me at any point. As could have my friends, family or church. Which covers pretty much everyone in my life.
**
Physiotherapy
David: Now I will talk about physiotherapy.
Sally: Okay, that sounds good.
Why did you want to get physiotherapy?
What sort of problems did you have?
David: I had back problems. I had back pain. I had tightness in my neck, shoulders and upper back. And overall I just felt kind of constrained. I can’t describe it. But mostly it was the back pain. I had pain in my spine (maybe around T2/T3, I can’t recall) and also “mid back pain”.
David: I saw a number of physiotherapists over the years.
I saw one at Victoria University Physio back in 2007, who I have already talked about. We don’t need to talk about him again.
I saw Lesley Unka at Lesley Unka Physio at the Raumati Beach Shops, on Margaret Road. That was a small privately owned practise staffed by a woman and her receptionist.
I saw three physiotherapists at TBI Health Kapiti. Yes, three! I went to the clinic on Rimu Road. The name TBI stands for “The Back Institute”.
And I saw one physiotherapist at Team Medical at Coastlands. His name is Nathan Scott. He was our church’s worship leader.
And I saw two physiotherapists at Willis Street Physio. But that was in 2012 and 2013, and won’t be covered in this part of the story.
Many years later I saw a few more physiotherapists and occupational therapists who visited me in my home in Princeton Road. I will not be talking about that part of my story on this page. But I hope to talk about them later. Their names are Shelley Fox, Nicola Dunford and Debbie Little.
Sally: It sounds like you saw quite a few physiotherapists.
Why did you end up seeing so many of them?
David: Well, it’s not like I saw them all at once. I just kind of saw them over time.
I had chronic ongoing back problems along with my other health problems. And I kept on trying to fix these problems, but without much success.
I will tell you more about it.
Sally: Go for it, I would love to know more.
David: I saw Lesley Unka at Lesley Unka Physio at the Raumati Beach Shops, on Margaret Road. That was a small privately owned practise staffed by a woman and her receptionist. I went in there complaining of back pain. I saw her perhaps 2-5 times in total. I paid with my own money (it wasn’t publicly funded or paid for by ACC).
Ultimately, the treatment wasn’t successful. She did some mobilisation of my ribs and vertebrae via my back, some manipulation (iirc, which perhaps I don’t), some therapeutic ultrasound, and some postural taping.
I didn’t feel any better and so I stopped going.
I think that my back tightened back up in between visits. And she mentioned it, asking “Your back tightens up between visits. Do you sit at the computer all day? Is that what causes the tightening of your back? What causes it?”. But I do have to offer a disclaimer, which is that I can’t remember if Lesley Unka is the physiotherapist with whom I had that conversation, given that it was a long time ago.
In hindsight, the problems were caused by satellites and cell towers. And she didn’t address these underlying issues (all of the cell tower and satellite stuff). But then again she may not have known that I was being harmed electronically via my nervous system. And I certainly didn’t know about it. I don’t want to make a massive fuss about this one at the moment.
Note: Some years after this, Amanda actually blackened the name of this physiotherapist by lying and telling me that she was married to the man who ran the computer shop on the same street, who was arrested for being a pedophile (Ian Mead). This happened a few years later. I’m not sure why Amanda lied. This physiotherapist was NOT in a relationship with the pedophile who owned the computer shop.
Note 2: My overall feeling of this physio is that she isn’t half bad as a person and tried to help. And is a competent physio. But may not have known that the cell towers or satellites were a factor? Don’t over think it.
*
TBI Health (aka The Back Institute)
I saw three physiotherapists at TBI Health Kapiti. Yes, three! I went to the clinic on Rimu Road. The name TBI stands for “The Back Institute”.
Sally: Tell me about that. How did you end up going to TBI? And how did you end up seeing three physiotherapists?
David: My general practitioner, Dr Amanda Clarke, recommended them to me. She sent me there. At an appointment I told her that I needed a physiotherapist because I was getting back pain. And she suggested that I try “The Back Institute” (TBI).
I told her that I tried a different physio first, but that it hadn’t helped. I also explained to her that I was getting upper back pain (somewhere around the thoracic spine) and that my “mid back” hurt (somewhere about the location of the serratus posterior). She asked me to try to touch my toes, and I couldn’t. And then she sent me there, telling me that she likes their philosophy of “it’s your back, and you have to take care of it and be responsible for it”. And so I went to TBI. I don’t remember whether or not there was any paperwork associated with being sent there. There may have been. This might sound strange to you, but I was trying to do things “by the book”. And I wanted to work with and trust my doctor.
And so I went to TBI. And this time I found a way to get ACC to pay for it (I sort of strained my back a bit picking up a storm grating). And they placed me in front of a woman physiotherapist. She then set to work. She asked me why I was there, and I explained. And I also told her a bit about my overall health situation.
She told me that I needed to loosen up my thoracic spine. And so here is what we did. She mobilised my upper back and then did some manipulations (crunched and cracked it a bit). She also gave me some exercises to do.
She prescribed bird-dogs, seated thoracic extensions, seated spine twists, and supine lying on a rolled up towel.
I did these exercises faithfully. But every one of them made me feel worse (even bird dogs). Not better.
I probably should have quit straight away. But instead I doubled down and kept on doing the exercises. I also kept on going to the physio. Neither the exercises nor the physiotherapy worked.
We had multiple sessions.
After a while, I confronted her slightly and told her that the exercises and treatment weren’t working. And that my back is just as bad whenever I go to her.
Then she was like… I could keep on doing the mips (manipulations; this is where they crunch your back a bit after “mobilising” the joints) but it isn’t doing much. So I don’t know. She told me a story, she told me that she had fallen off a horse when she was young, and that this hurt her back, and that even though she had treatment and did rehabilitation, she still had pain. And that pain was just a part of reality and life and she had to get used to it. Her attitude was that not all back problems are solvable.
So anyway, I kept on going and I kept doing the exercises. But we stopped doing manipulation. And then I ended up seeing a second physio there, and then a third. I ended up just explaining things to them, but nothing came of it.
I just remained a man with back problems.
The exercises actually made me worse. They just plain hurt me. The exercises hurt me. The seated thoracic extensions and supine lying on a rolled up towel hurt me in particular. I think it actually was bad for me to do these. It just hurt my back, and gave me symptoms. I think that the thoracic spine was “jammed up” due to remote control muscle tightening and then when I did the exercises to loosen things it just tried to loosen something jammed tight. Which hurt me. Laying on the towel, I was down for a minute or two on the towel (on the ground). Either way, the spine at about t1 and t2 was already sore and easy to aggravate.
Sally: How can bird dogs be a problem for you?
David: I know right? How can bird-dogs be bad for me!? That is what the physio said. When she said it, I was like, “Weird isn’t it. And I was like. They don’t work. And they actually make me feel worse. The make my spine hurt. It sucks.. they don’t work!”
But I told her that the exercises do hurt me, and they aggravate the pain in my spine. She also told me that bird-dogs are just about the easiest exercise that she had. And that she can’t do anything easier than that. And for me that was disheartening.
And she then said that I should try being on all fours on the ground and just extending an arm instead of doing an arm and a leg at the same time. And then I tried that. But that didn’t get me anywhere.
And I think that’s it.
Their advice made me worse.
One more note:
I went in for multiple sessions. And they would like… mobilise and manipulate (crunch) stuff. And then it would feel better for a bit. But within a little bit, it would feel bad again. It became compressed again, I guess maybe they tightened it by means of satellite and cell tower. It may have been this physiotherapist who asked me, “do you spend a ton of time on the computer between sessions, and is this what causes your back to compress again?” But I honestly don’t remember which Physio said that.
****
****
The next physiotherapist I saw was Nathan Scott at Scott Physiotherapy and Wellness. His physical address and location was at Team Medical at Coastlands Mall. Team Medical is a franchise chain of medical centres.
Sally: Another physio? Why did you keep on seeing more physiotherapists? Were they all back to back?
David: Yes, I saw another physiotherapist. I saw them over a period of time. I saw them because I still had back problems. The physiotherapists hadn’t solved the problems with my back, so I kept on going to physiotherapists. And no they weren’t all back-to-back, of course not. They were over a period of time.
Why did I go to him in particular?
It is because we used to go to the same church. And so I thought he might be worth a shot.
Just a little bit more about that. He was our worship leader and also the MC (aka service host) for church services at the ccc. His father (Bruce Scott) had previously been the chief elder and main pastor at the church. I did feel that perhaps he might be trustworthy. He seemed like a safe option as far as physiotherapists go, given that he was from the same church as me and worked out of the same premises as Team Medical at the local mall. I had stopped going to the CCC by then because I was too physically unwell to attend.
Just a couple more things: a while before I went to him for physiotherapy, I had wanted to get into doing music at the front of the church, because they needed a guitarist. And Nathan was part of that, and gave me some sheet music to practise from (at least I think that it was him). It never really worked out because I was too unwell to go to practices, and I wasn’t really well enough to practise guitar (it hurt my neck and shoulder). And another thing is that he had known that I was getting sicker and sicker. To the point that I had lost the ability to attend church.
Anyway, Nathan Scott. Where do I start?
Firstly, I told him about my problems. I told him that I had CFS and how that had developed, I told him that I had back problems and problems with my feet as well. I told him that I had seen a couple of other physios. I asked him to help me.
Secondly, he gave me some exercises on a swiss ball. He had me starting out sitting on the ball, and then had me roll forwards on the ball, and then roll backwards in such a manner that I ended up lying on the ball. I ended up in a back bend over the ball. I was also supposed to spread my arms out to the sides to stretch my pecs; letting them drape over the sides of the ball. This exercise and stretch was supposed to stretch my back, neck and chest. It wasn’t very good for me though, and resulted in a couple of weeks of increased symptoms (I had CFS and a bad back, remember?). I felt very wiped out. He then charged me $100 for the session, and $60 for the swiss ball. Overall, it didn’t do me any good. And I never did the exercises again, and I never used the swiss ball again.
Thirdly, I went back to see him a second time. I told him that I wanted to figure out a way to stop my feet hurting (I had foot pain related to the cell towers and satellites). And he prescribed orthotics to me. I also had to buy a new pair of shoes to go with the orthotics (apparently you need special or fancy shoes to have the orthotics fit into them). This set me back $400 ($100 for his time, $80 for the orthotics, and $220 for the shoes. I had never paid that much for shoes in my life by the way). And it didn’t do me any good. I actually kept wearing those shoes with the orthotics for ages. And they were very bad for me. There is a lot more story to tell there (when it comes to shoes and gait) but I don’t think we’ll ever tell that full story. But at the end of the day the shoes with the orthotics were bad.
This might sound silly to you. But I kept on using them, because I thought that I needed to use them. It wasn’t nice. And it wasn’t good.
His story was that I over pronated my feet when I walked. He claimed that I had a bad walking gait, and that I over pronated my feet, and that I needed special shoes and orthotics.
Fourthly, he also suggested that he could cure my CFS with supplements. But that it would be expensive. He told me that he sold supplements.
Lastly, he could very easily have just told me what was wrong with me. Or at the very least not harmed me or made me worse. All I needed was some truth. The real problem (as always) was massive satellite and cell tower based harm, caused over the long term. He could have just told me this. And there were actually exercises and movements that could have been useful for me, even without the giving me the full truth. And one more thing, he knew that I had had such serious health issues that I had become incapable of going to church.
Note 1: I had in the past volunteered to help with the church’s youth group. And at one point I had hoped to join the church’s worship band to play guitar. But I struggled with practising and learning the songs on guitar due to back pain and some problems and issues when it came to being able to focus.
Note 2: I want to mention that I gave him a recap of my whole story. Or at least I think I did. The computer tells me that I did. And it would have been in line with my character to tell him. I just can’t remember exactly. It was 16 years ago, after all.
**
Disclaimer:
I also must offer a second disclaimer, which is that I can’t recall which physio I went to when. The truth is that I have forgotten a lot of details from the past. I think the order is correct. But might have seen TBI for a session or two, and given up. Then gone to Raumati Road physio. And then back to TBI.
I feel that the narratives given above are a good enough representation of events.
****
****
I went to seven medical professionals over those three years. Plus a couple more, but those don’t really count.
I saw multiple other medical professionals before those seven (from 2006-2008), and some more medical professionals in 2012 and 2013 (two at Willis Street Physio, and one doctor at team medical, and two new doctors at kys, and one new doctor at Raumati Road Surgery iirc. I remember Gayle Snyder, Ruth Brown, Diane Carter and two more; one was a highly experienced male physio at Willis Street Physio, the other was a woman doctor at KYS. Perhaps the other doctor at KYS was Dr Sue Wilson).
*****
*****
David: I think that’s enough about medical professionals for now. Maybe we should move on to a new topic.
Sophia: Okay
Sophia: Where were your friends in all of this? Did they offer you any good advice, support or guidance? Any help of any kind?
David: That is a good point. I should probably talk about that.
Sophia: And on that note, who were your friends at the time? Who did you spend time with? Could you tell me about your social life?
David: Hi Sophia, you haven’t spoken up much on these calls have you? Yes, of course I can talk to you about my social life.
Sophia: No, I haven’t spoken much on these calls. Not yet anyway. But I was curious as to why your friends hadn’t said anything to you about your terrible health, or let you know about the horrors of the system. And I also thought that we ought to talk about your social life in general over these three years (2009, 2010, 2011).
David: What was my social life like in 2009? Hmmm. I wasn’t very well in 2009, I was sicker in 2009 than I was in 2008. And I have to admit that my social life wasn’t great. But I guess I should say that it revolved around church and Sunday lunch. And spending time with my flatmates. And then I guess I’ll talk about my social life in 2010 and 2011.
David: Actually, I would like to mention one thing just quickly. This takes us back to 2007 and 2008. We spent a fair bit of time at Amanda’s grandparents house at 46 Dale Road, Raumati South. And we also spent some weekends at Amanda’s mother’s place at 5 Weka Road, Raumati Beach. And I’m talking about 2007 and 2008 here. Both of these places are in Paraparaumu by the way. And sometimes my/our friends came over. For example, Amanda and I had our engagement party at her mother’s place in March (?) 2007. People like Jesse, Nathan, Aaron and Philip came to that. And Amanda and I had Jesse and Nathan over to visit to socialise once or twice while we were staying at Amanda’s grandparent’s place at Dale Road. And one more thing, I went to family dinner night quite a lot with Amanda, her mother, and Amanda’s grandparents, and I think some of her aunties and uncles. We might talk about this later. Family dinner was at Dale Road, and then later it was held at their place on Guildford Drive (they moved house). I’ll talk more about my in-laws later, I spent a fair bit of time with them early on, especially Amanda’s mother and grandparents. I also saw a little bit of Amanda’s father and step mother (Daryl and Natasha). That was back in 2007 and 2008.
Sophia: Okay, friends first. And then later we talk about family. That sounds good.
David: Okay, let us talk about my friends and my social life.
In 2009, my social life consisted of spending time with Amanda, spending time around and with my flatmates, going to church, and having people over for Sunday lunch (some of this might blend into 2010/2011, without warning). We also went to family dinner night at Amanda’s grandparents house, iirc. And I sometimes saw my father or talked to my mother on the phone. Lastly, I played natural selection online, which could have been considered a form of social interaction. But I wasn’t all that sociable with people online. Maybe a little bit. I ended up being the admin of the two New Zealand natural selection servers, which were put back up by gameplanet (now mighty ape). The game had actually died in Australia and New Zealand, and all of the good servers were down. And I revived it a bit, with some help from gameplanet. I also sometimes went to Darryl’s place with Amanda. He was my father-in-law after all, and Amanda and I were married.
Anyway, let’s talk about Sundays and church and Sunday lunch. I used to go to church on Sunday and then have my friends over afterwards for lunch. And then after lunch we might play cards (such as the popular game Bang!) or board games such as Settlers of Catan (and expansion packs). I loved that game by the way (even my dad loved it, I introduced him to it). Sometimes we played video games together such as guitar hero or rock band. And for a while we played the popular Warcraft 3: Frozen Three custom maps “battleships” and “werewolves”. Who was I socialising with? I was spending time with Jenna, Natalie, Philip, Amanda, Jesse, Nathan, Ashley, John and Lauren Cosgrove, Aaron Oldcorn and Ashley King. I forget who else.
David: Can we talk about church for a bit? Some of it might be a repeat of things mentioned earlier.
Sophia: Go for it. I gather that you used to get hit by a lot of electro-quantum stuff while sitting in church. I like that term by the way, “electro-quantum”.
David: Yeah, I like that term too. We could call it “electro-quantum interference with my nervous system”. Or perhaps, “Electro-magnetic-quantum interference with my nervous system”. Anyway, church attendance was very important to me. The shared lunch on Sunday (followed by board games, card games or similar) was also very important to me as well.
Let us talk about church on Sundays.
Sophia: Was it very important to you that you go to church on Sunday?
David: Yes, as a Christian it was very important to me that I attend church on Sundays. And that even though I was physically unwell, that I try not to let that habit fall away. It was kind of like I wanted to maintain standards and not let that habit slip away altogether. Because I felt that it was important to hear Christian teaching every week, and important to sing the songs and worship God, and spend time with other Christians (fellowship). And I felt that it was important to associate with other Christians (as iron sharpens iron, etc), and to have other people who I could go to for advice and guidance and “good counsel”. By that I mean that I wanted and needed some older people in my life, who were further along in life than I am, and could potentially give me good advice. And so I made sure to keep on going to church. It was kind of like an anchor point in my week; something that helped me to stay consistent. I’m not sure that anchor point is the right term though. A focal point for the week perhaps?
The problem is that I couldn’t really manage it physically. But I’ll talk about that some more in just a moment.
Sophia: What do you mean by you couldn’t really manage it?
David: Physically, I had bad symptoms associated with church attendance. When I sat in church, I had back issues, breathing problems, circulation issues, problems with temperature dysregulation, problems with dehydration and a few other things. And of course I felt fatigue. I had problems, you see. I would sit there and suffer from problems. Some of the problems were long term problems related to harm already done to me by the system (i.e. the fae-dregvant), including long term modification of my posture and structure, loss of muscle and fat, fatigue/exhaustion, back/breathing problems, and circulation problems. Some of the problems were induced “in the moment” by cell towers and satellites. They actively caused issues and symptoms while I was sitting there in church. But I pushed through and kept on going, because it was important to me. I endured. I want to mention as well that the long term problems I experienced were also caused by the dregvant. I had experienced long term changes to things like my back. And therefore my ability to breathe. And I had circulation issues too.
I will explain a little more. My back would hurt, and breathing was “weird” if I tried to sing in church. And sometimes if I “pushed through” when my breathing was weird, then I would end up with my back being sore. What else? I would get really cold, and then really warm, and have to take my jacket on and off. And my nose would get cold too. Which I guess may have been a circulation thing. And according to Amanda my lips were slightly blue sometimes. I guess that my blood oxygenation wasn’t good. I had a favourite spot to sit in the church. I would sit on the right hand side of the church hall, and lean against the wall. I always wanted to have the wall to lean on. I remember that I was always thirsty too, and so I would often have to walk out once (sometimes twice) during a church service to get water or to go to the bathroom. And sometimes would raid the kitchen for a glass of water and bring it into the church hall. It seems silly to me to mention that point too much. But it was important at the time, the water thing. I think that they used “dry mouth” as a symptom, and they may have used it fairly often. Next, I would often have to put my jacket on because I was too cold. And then I would overheat, and start to sweat, and then I would take the jacket off again. And I’d repeat this again and again. It was weird. I think that my body was under a fair bit of strain.
Getting to-and-from church
I didn’t drive at the time (long story, I might tell you about it sometime), so I needed a lift to get to church. Who took me? Uhh. It was Amanda sometimes, Jesse sometimes, and then later on it was Jesse’s parents. And then later on it was Jo Dacombe. She was married to one of the deacons, Lloyd. She was nice, or seemed to be a nice person. But I fear that in reality she wasn’t a very good person. And she knew that I was unwell. But I guess that she didn’t want to tell me why I was unwell (and had therefore been forced to drop out of university). Perhaps she was a bad egg overall. I’ll put a little bit about her in the notes. We talked a fair few times about my being unwell.
When it came to church attendance, Amanda was slack. From late 2008 onwards, she only came to church sometimes. She always wanted to sleep in on Sundays, she wanted more sleep! As for our flatmates, Natalie often came to church (she was flatting with us by then). I always wanted to take people to church: I nagged and dragged. And once Jenna moved in, I sometimes managed to drag Jenna along to church iirc. I think that I managed to get each of Philip and Aaron to come along to church once each as well.
Anyway, I remained a part of the church for a long time. Because it was important to me that I be a part of one. And it wasn’t just a church to attend, it was supposed to be a “community”. You’re supposed to be a part of a community. It was even in the name, the “Coast Community Church”. According to Christian books that I had read, such as “The Purpose Driven Live” by Rick Warren, it was important to remain a part of a church. Fellowship is supposed to be very important of Christianity.
There was also a verse in the Bible, “Let us hold unswervingly to the hope we profess, for he who promised is faithful. And let us consider how we may spur one another on toward love and good deeds, not giving up meeting together, as some are in the habit of doing, but encouraging one another—and all the more as you see the Day approaching.” And so I felt that it was important to keep on going to church.
[[[formatting note, bold the “not giving up meeting together” part - then delete this note]]]
I eventually gave up on church, because I was too unwell to attend. I even gave up on membership and Bible studies. I was actually really unwell. How unwell do you have to be to not be able to manage to attend church!? All you have to do is sit there.
What else!?
I would stay after church to talk to people for a little bit, but not for long. There was stuff like tea, coffee and biscuits served after church. A number of people there, perhaps many of them, knew that I was suffering from chronic fatigue syndrome. There was one elderly woman name Delwyn who told me that she had cfs, and that she expected to have it until she died. I wonder what happened to her. Also, I wonder why she didn’t just tell me? Actually, on second thoughts, I did sometimes stay afterwards to talk to people a little bit. I did use church to socialise a bit.
Usually some of my friends like Jesse Orchard, Natalie Hymers, Nathan Thatcher and Ashley King were there. After the church service, and a cup of tea, we would go and get some food from the supermarket and then go to someone’s house for lunch and socialising/games. Sometimes it was my place, sometimes it was Jesse’s place, and on at least one occasion it was Aaron’s place. But we all got together for lunch, followed by games (board games, card games or sometimes video games such as guitar hero).
The Sunday lunch was a fixture of my social calendar. And really very important to me. I wanted to keep that habit alive, even though I was too sick to do anything much in life.
I actually felt horrible after church and lunch, but I maintained the habit anyway. To be specific, I was tired on Sunday evening and on Monday as well. It actually cost me energy. And I experienced “consequences” for “pushing through”, and going to church and having Sunday lunch and playing board games with my friends afterwards (this is “gist truth”, not “quibble-proof-truth”). I felt bad on Mondays because of church, lunch and board games on Sundays. When I pushed through on Sundays, I felt bad on Mondays. Now, I wasn’t quite so bad in late 2008. And that’s the quibble. But from 2009 onwards it was getting to be kind of bad.
But at the end of the day it cost me. Socialising and going to church cost me. I paid the price anyway, because socialising and having an “anchor point” for my social life was important to me. And church was important too.
*
Alistair started joining us for Settlers of Catan as well. Just a bit about him now. He wasn’t a “church guy”, he was openly an atheist. He later became a school teacher. He was a year older than I was and had gone to the same high school. Jesse invited him over, because he liked Catan. Jesse and Alistair were friends. I had previously met him a few years before at high school and once at a tight group event.
Alistair’s girlfriend Lizzy came along too. She worked at a supervisor at Pak n Save, the local supermarket. She used to come over fairly often in 2010. At least I think it in was 2010. It waa actually over a period of time.
Back in 2009, Alistair and everyone else invited me to a quiz night at the Monteith’s Bar (at the Kapiti Lights). I went once. They kept inviting me, but I only went once. I like quiz nights, but I went only once. Just once! Because I was too unwell to try to regularly attend a quiz night. It would have cost me too much health wise. The others went regularly, even Amanda.
But we played Catan a fair bit. And not just on Sundays. We sometimes played together during the week. This included Jesse, Natalie, Alistair and Jenna.
*
What else? More stuff about socialising.
I think I went to a birthday party of Jesse’s in late 2009 and early 2010. We played the board game Carcassonne and swam briefly in the pool (I had a day with bizarrely and strangely good health, so I jumped into the pool). This was at his parent’s house. Kieran Rayner and Jess Mackenzie were there too. Strangely enough, they were dating for a long time. I think that Byron Mallet may have been there as well. They all knew that I had CFS, and had dropped out of university because of it. Jesse’s birthday party was held at his parent’s place. His parents were there too. I said hello to Geoff and Christine when I was there, and even helped out briefly in the kitchen.
Wait, one more thing, back to the lunch and Catan crowd. They all knew that I had “chronic fatigue syndrome” and they all knew what caused it. We were all sitting at the dining room table to eat lunch together. And then we were all playing Settlers of Catan together, or cards, or playing guitar hero, or Warcraft 3. And no one told me. No one told me why I was unwell, even though it was an open topic of conversation (I.e. I had talked with all of them about my health problems, and why I was unemployed, and no longer at university, and also why I couldn’t socialise as much as I would like to).
**
Sophia: Do you want to keep on talking about your friends and flatmates? Or do you want to move on to talking about your family and church some more?
David: I think that I would like to talk about my friends and flatmates for a bit, and then talk about my family and my church.
Let us talk about playing cards in the evening with the guys. First 500 and then poker.
Some of the guys back in late 2008 and early 2009 had a habit of playing cards together. These were guys like Jesse Orchard, Chris Westwood, John Cosgrove, Ashley King and Nathan Thatcher. This was separate from playing Catan or “Bang!” after Sunday lunch. They usually played 500, which I never really liked as a game. They used to play it in high school too (they were friends from high school, and also from church - I knew them from both locations/settings). I think that they sometimes played Bang! also. Along with this they used to drink. Mostly they would whisky with mixers. I think that I went along to Nathan’s house in the evening once and we played 500 and had whisky, ginger beer and lime. I can’t recall if there was actually lime in it, but John Cosgrove called it a “Kentucky Mule”. It would have been too tiring to play cards with them often. I couldn’t justify spending that quantity of energy on it. And so I didn’t end up going along. Which is sad. Who has to ration out their energy so much that they can’t enjoy an ordinary night of cards with their friends? This was in 2008.
After a while they switched to poker, and would have a regular poker night. Or maybe this was something like a year or so later. They did this once a week, I think. They got into poker, and used to invite me along. I went once to poker night. They used to hold poker night in the upstairs staff room at Jesse’s father’s joinery. We also played Settlers of Catan up there once too.
And so I want to talk about poker night with the guys. This might be in 2010. But I can’t remember. The guys had a habit of playing poker at Jesse Orchard’s father’s joinery. His father owns a joinery in Paraparaumu. Orchard Joinery is the name of the business, it is on Te Roto Drive, just across the road from the old Fonterra factory (previously the Kapiti Fine Foods Ltd factory, which made cheese and ice cream). They had a staff room upstairs, which Jesse sometimes used after hours. I think that I joined them only once (maybe twice). But probably only once. I wanted to play poker with them, but I just couldn’t justify the energy cost. Even climbing the stairs left me feeling fatigued. And the activity of playing poker for a few hours with them would have cost me an excessive amount of energy. And left me feeling quite tired. And it was only 5 or 6 minutes drive away. You know that it’s a bad sign if you can’t even manage a sedentary activity like poker night with your old friends from high school.
But still we managed to play Catan and sometimes other games after lunch on Sundays. If I might digress, they did teach me to play poker, which we played once or twice after lunch on Sunday, but I wasn’t a terribly experienced poker player. In my opinion, it’s not half bad as a game, and if I hadn’t been so unwell, then I probably would have learned to play, just so that I could socialise more. We played “Texas hold ‘em”.
*
Bible Study
Next, while we're talking my social life, we might as well talk about the Bible study at Jared and Amanda Doncliff’s place. Jared and Amanda were both Christians, and were 1-2 years older than Amanda and me, and lived on Chum’s Road, Paraparaumu.
Who went?
I went to that Bible study. And a few others. I can’t actually remember who went and when. Jesse was there. I think that Amanda might have gone once. I think that Ashley King went. Jenna and Natalie came to the Bible study too, but later on. Sometimes the Bible studies were independent Bible studies. Sometimes they were from a book, and later we just made them ourselves. I made only one, and I didn’t think that it was very good. To be honest, I thought that my one was lame. But not a complete disaster.
Jenna, Natalie and I went to the Bible study together. Jesse said that it was good that Natalie went to the Bible study, because she was new to Christianity. She wasn’t actually all that new to Christianity. But his idea was that she didn't know much about Christianity, and needed to learn about it. Remember that Jesse's father was (and is) an elder at the church. In that church system, an elder is a pastor, basically. The role of an elder at the CCC is very similar to the role of a pastor in a church.
At one point in this Bible study we worked our way through a special workbook about basic Christianity. We did this to learn about the fundamentals and the basics of the beliefs of Christianity. But we didn’t always do Bible studies from this book. It actually wasn’t a very popular program. People at the church weren’t happy about it and they weren’t happy about the fact that someone bought it in. We gave up on that program after a while.
Next, let us talk about health issues. I found that I couldn’t sit comfortably in a chair at the Bible study. And I started to get less and less comfortable. And started wondering what I should do next. I had back issues. I couldn’t even really do Bible studies. And it was the spine thing. The back tightening thing. And the long term changes associated with it. I’ll talk about that more later. And so in the end I quit going to the Bible study. It was kind of a Bible study, and also a small group. The truth is that I can’t remember why I stopped going. I think it was basically just health problems.
*
A brief digression
Some years later I was invited to go to another Bible study. This Bible study was tied to the CCC. It was run by some Russians. I wasn’t well enough to go. And so I said no. I also let my membership with the church lapse at around about the same time. This may have been about 2012.
*
A few other notes
Some years earlier, I had done the 40 Days of Purpose programme, based on the book “The Purpose Driven Life” by Rick Warren, which I thought was good.
Jenna became a Christian at some point.
Jenna and Nathan were a serious couple for a while. People thought that they might get married.
*
David: Let us talk more about Catan.
Sophia: Yes, let’s talk about Catan. First of all, what is it? And what would you like to say about it?
David: I’ll just look it up online. I’ll find you a description of it. Here we go… “Catan (formerly known as The Settlers of Catan) is a multiplayer strategy board game where players act as rival settlers, competing to build and develop settlements on an island. By gathering and trading resources, players construct roads, settlements, and cities in a race to reach 10 victory points. Settlers of Catan was created in Germany.”
I liked it. Nathan Thatcher introduced me to it in late 2008 or early 2009. I wasn’t enthusiastic at first, because I wanted to play the card game Bang! instead. But I quickly came to love it. I read all of the manuals and online strategies straight away. I thought through the probabilities and statistics relating to dice rolls. I enjoyed it. I ended up buying the game, as well as all of the expansions. I bought the expansions “Cities and Knights” as well as “Seafarers”. And also the expansions that allow you to have 6 players instead of 4. Board gaming isn’t like it used to be by the way, it’s not just a 4 player game of monopoly like it used to be. Things have advanced and improved a lot. Before I owned my own copies of Settlers of Catan, I borrowed Nathan Thatcher’s copies for an extended period of time. As it so happens, I think that my father bought me one of the expansions packs as a birthday present, but I can’t recall. I was obsessed with Catan.
I loved that game. When I was introduced to that game in the summer of 2008/2009, it felt fresh and exciting and fun. And I could still play two games of 90-120 minutes in a row. I actually felt okayish during those summer holidays. At least I did in the afternoon. In the mornings I still felt like rubbish. Well, to tell you the truth I knew I was still not feeling well. But I was hopeful, and could manage at least to play board games. I felt okay enough to enjoy board games is what I mean. Not okay in general.
And then a little bit later on in the year, I had problems with my health. And I quit university due to bad health. We have already discussed that.
After things settled down a bit after quitting university, I started playing a little bit of Warcraft Three: Frozen Throne, melee and also some Catan. I felt that I couldn’t do the things that I really wanted to do in life. But I felt that I might be able to play Settlers of Catan a bit. But as it turned out, it didn’t really work that way.
Sophia: What do you mean?
David: I would have loved to have been gainfully employed, or a full time student at university. Or have done a hobby like Muay Thai, or cycling, or tennis. Or at least worked out. Or worked on serious computer programming, or developing my skills so that I could work in inventions. Or been practising guitar or piano. Or something. Or anything!
But I couldn’t do it. So I thought that I could at least do things like play board games. But even that seemed to be too much to ask. Playing board games caused me problems. It would actually cause me to experience symptoms. Symptoms!
Sophia: What sort of problems did it cause you to experience? How did you respond to those problems? Did you try to work around them at all?
David: I would get symptoms when I sat down to play games. I would feel tired. I would experience fatigue. It was tiring. I would also get issues with tension in my neck, shoulders and back. I’d would end up with a fair of “strain” in my back over all. And there was some sort of constriction of breathing, which was always tied to my back issues. I can’t explain that bit. I can’t explain how the constriction of my breathing was tied to my back issues. And my spine hurt, at about T1 and T2. And the strain sometimes caused me to sweat. It was that bad. There is another confounding factor though. It is that I was using this thing called the Alexander Technique to try to improve my posture long term. And so I was trying to sit tall while sitting at the table; I was trying to “sit up”. And then unbeknownst to me, at the same they were messing with the muscles of my neck, back, chest and shoulders. And who knows what else.
Early on, like in late 2008 or early 2009, I wasn’t experiencing significant symptoms. Maybe I was a bit tired after playing for a while, as expected. And so I rested. I did have CFS after all. But as time went on, I experienced more symptoms. And as time went on, I would struggle even to play at all. And then eventually I had to quit altogether.
**
I will give you some examples of how things were.
On Sunday I would have church, have a quick cup of tea afterwards and talk to people, get some food from the supermarket, come home. Rest for ten minutes. And then we would have lunch. And then I would go to rest for a little bit again. In bed. And then I would come back to clear the table and set up a game of Catan. And then we would play a game. And then I would often go back to my room to rest for ten minutes. And then I would come back to play a second game. Now, by the time I had finished the first game, I was already not feeling so good. But by the time I finished the second game I was feeling awful. And so I felt bad for the rest of the day, and it had an effect on how I slept that night and on how I felt the following day. This is maybe late 2009-2010. I can’t remember exact dates, as it was a while ago.
As for my health at the time, I was already feeling unwell. And I couldn’t even manage to do normal things like a comfortable walk twice around the block. And to my mind, that’s just not normal. An ordinary walk for something like 30 minutes made me feel bad. I feel that an ordinary walk for something like 30 minutes shouldn’t make you feel bad.
And so when I was playing this board game that made me feel physically worse, I was already unwell (I wasn’t feeling good in the first place). But I felt at the time that socialising was very important, so I just pushed through. And I paid the price in fatigue and exhaustion.
But it was the main part of my social life. My favourite part.
When it came to my health back then, I had more bad days than good days.
I also used to sometimes have Alistair and Lizzy over for a game or two in the evening. Sometimes two games in a row. Usually just one. They were my board game friends. And so that was nice, but I still felt significant strain in my back. Jesse and Natalie sometimes would sometimes come over for a game of Catan as well. The ideal was if we could get six together.
[[[restart here]]]
**
Rationing
And so I had to ration it out!! It is absolutely crazy to me. I had to ration it out, because it cost me so much in terms of energy and wellbeing. But maybe I only started feeling that bad in late 2009, or early 2010. I can’t remember that part of my life properly. Or at least I can’t remember the exact dates. But I couldn’t play Catan without pain, fatigue, exhaustion and symptoms. The same is true for going to church as well. And so the three main and most important parts of my social life (church, Sunday lunch, and board games with my friends) were becoming difficult to do.
What else?
I think that when I played Catan, they would tighten up my back. And that this is what caused the symptoms, and robbed me of my ability to enjoy just playing games. I ended up with a sore spine and back. And breathing issues, and fatigue. And I was sweating profusely sometimes. That’s not natural. And they had already caused long term changes to my posture and back as well. And so the extra tightening came on top of that and in that context.
Annnnndddd eventually I just stopped playing Catan.
***
Sophia: You couldn’t play it as much as you would have liked to, because of energy level problems. Right?
David: Yes, that’s right. But also there were back problems too, just in general. I often had back problems associated with sitting. And I just couldn’t play for as long as I would have liked. And then I stopped playing, eventually. Which was so sad for me. So sad. It was like one of the last nice and fun things I had left.
Sophia: How much time are we talking about?
David: I might play it once or twice a week. But I would have to ration it out. One game might take 90-120 minutes (with expansions). And I’d want to play two games. But I would find that by the end of the first game, I would have a sore spine and breathing issues and other problems. And then I’d have to rest, maybe. And then I would play another game. And then I would feel bad. And it would even affect me the next day. That’s not normal.
*
And also I might mention the Kapiti board gaming club.
A board game club started nearby, which used to meet in one of two locations (Kapiti College and a private residence on Rosetta Road). They started up in 2010. At the time I didn’t go, because I was still playing board games with my friends (Jesse, Natalie, Alistair, Lizzy, Jenna and a few others). But over time I played less and less often because I was in worsening health.
Amanda thought I should go to this club, because I needed to socialise more (which was true). But I told her that I would rather play board games with people I knew like Jesse, Natalie, Alistair, Lizzy, Jenna and a few others. And that at the same time, I was in poor health and had to ration my energy out. And so I would rather use my limited energy to play board games with people I knew. She nagged a bit, but never mind that now.
But later on, I did want to go, because I needed to socialise more. But I wasn’t well enough to go. We exchanged one or two emails (I was on their email list in 2012 and 2013, briefly). But I wasn’t well enough to go. I would have loved to have played board games with them. But I wasn’t well enough. I didn’t even go once. Some of this falls outside the 2009-2011 timeframe that this page is supposed to focus on. But I think that it’s no big deal.
Oh, and before I forget, it wasn’t the only thing I tried to join, but couldn’t. I tried to join the local Red Cross, but didn’t have the energy to help out. Or even to go to meetings. And so I didn’t go to meetings. I was on their mailing list for a while though.
I also tried to find a church locally. Within a few minutes walk. There was one Baptist church locally that might have been nice, but it was closed. It had shut down and sat there mostly unused. And there was one church, a Uniting Parish, just across the road, but I went there once and they were too politically correct and so I left partway through the service. I had already felt that they were too liberal before going. And the political correctness confirmed my point of view that they were too liberal for me. In hindsight, perhaps I should have kept going to that church. They might have been nice people.
And so anyway my social life pretty much died.
***
David: Do you mind if I tell you about the time I introduced my father to the game “Settlers of Catan”?
Sophia: Sure, go for it. When did you introduce your father to the board game Settlers of Catan?
David: He came over once when we were all enjoying our post church Sunday lunch and we played a game of it at the dining room table at 5 Weka Road. He sat down to play games with my friends and me. Which was a bit odd. But it was still nice to see him. We were still family even though relations between us were a little bit hampered by my health problems and the fact that he seemed to insist that they were psychological in origin. And at the time I also thought that my getting married still bothered him (ps: I now know the full facts. But at the time I had felt that things were less than ideal between us because I had gone and got married, as well as the health situation).
After I introduced him to the game, he bought a copy of it for himself, including expansions. And he played a fair bit of it with his family and friends. By the way, we all used to love board games. And we used to play a lot of them growing up.
I played it at his place with him and one of his exchange students, at least once. This was when I visited to stay a couple of nights.
He even bought the iPad version of it.
****
****
I will now talk about my flatmates for a while, and then I will talk about my friends for a little while, and then I will talk about my attempting to get involved in the youth group, and the church band. And after that I might talk about going to the elders early morning prayer meeting to have people pray for me. And then my visits to the local Pentecostal church’s “miraculous healing” prayer meetings.
And then I think I will talk about my family for a while.
Sophia: Okay, I’ll let you get on with it. Do you think that I might ask you some questions first? Before you get on to the next segment?
David: Yes, of course.
Sophia: Did you play any other board games or computer games?
David: Yes I did. I played Pandemic with Alistair and the others. I also played a fair bit of Rock Band and Guitar Hero. Amanda and I both enjoyed Guitar Hero. And we used to fight over who would hold the high score for various songs. Or who should beat Natalie’s high score. I also tried to get a little bit of Age of Empires 2 going with Jesse Orchard, and also we played a bit of Empire Earth once or twice(Me, Phillip, Aaron and Jesse). I also played some Natural Selection and DotA, but seldom with my IRL friends.
Any more questions?
Sophia: Yes.
You say that you had problems associated with playing board games and card games. Did these problems extend to your ability to do things like play video games, read books, or socialise in contexts other than playing cards or board games with your friends?
David: Yes.
The short answer is yes.
These problems did extend to my ability to play video games, read books, and socialise. Eventually. But I can’t remember exactly when things changed in regard to each individual one of these three things. I intend to discuss each of them individually both here and elsewhere.
Reading
I used to read a lot. This was back in 2009 and I think in 2010. I can’t remember exactly when reading became a problem for me though. Reading used to be easy for me back in 2009. But at some point it stopped being easy and became a problem. It started to be difficult to read. And then by 2013 it became quite a significant problem and I lost the ability to read in any kind of comfortable position. It’s difficult to explain how it happened, but I will try to explain it at some point. Maybe not here and now though. I think it got bad in 2012.
I later got back into reading in 2014 when I discovered that I could read while standing up, resting a book on a chest of drawers while kind of slumping down into my hips, especially my right hip.
*
Video games
I played quite a few video games on my PC back in 2009 and 2010 iirc. Physically, it wasn’t too much of a problem back in 2009. But by 2012 it was a problem. I can’t remember exactly when that happened. But I’ll probably discuss it in the entry for 2012 and 2013. I think it started to be a significant problem in 2011.
I ended up over time with the same sort of problems and symptoms as with board games. I lost my ability to play video games. If I played games, I ended up with a sore back, and my spine hurt. And sometimes I would sweat due the strain of it. The cause was that a lot of stuff from the cell towers and satellites was messing with me. Not that I knew it at the time. I will talk about this issue in a note at the end of the page. Some of it was similar to sitting in church as well; the effects and symptoms were similar.
*
Social life
My social life got worse and worse. But I might talk about that elsewhere.
****
****
[[[note to self]]]
[[[insert more questions here]]]
Sophia: Can you tell me about your flatmates now?
David: Sure. I had some flatmates in Kapiti. Or I should say that _we_ had some flatmates. I’ll talk about them now. I might also list a few more friends and discuss them at the same time. And along the way I might recount some of the conversations we had that relate to my health.
Who might I talk about?
We had a flatmate Shanice for a little while, once we moved in. But she left before too long. We had a woman named Alannah living with us for a while, but she left too. Shanice and Alannah aren’t all that important. Natalie became a flatmate fairly early on. She came from a troubled background (Her parents were addicted to methamphetamine; she suffered from abuse at their hands and extremely serious neglect). Matthew lived with us for about ten weeks. This was when he was in between living with our father and when he moved to Wellington. Phillip moved in a while later. And Jenna moved in later. Graeme moved in a while later. He also introduced us to Hayden who moved in a while later as well. Our last flatmate that we had was Angelica. It was a four bedroom house. And some generally had 2-3 flatmates at a time. We needed them to be able to afford to pay the rent.
Phillip moved out at some point, perhaps in 2011. He moved to Tawa and ended up staying with Alistair and Lizzy at their flat. Aaron Oldcorn also ended up living with Alistair and Lizzy when he finally moved out of home. Jenna also moved out at some point, perhaps in 2012. She moved back home to live with her family (where she then lived in a cabin in the backyard). Hayden also moved out, but I forget when he moved out. He met a girl and moved to Australia.
As for friends and other associates, I will talk about a few of them. Jesse Orchard I have mentioned before, but I’ll talk about him a little bit more. I will talk about Nathan Thatcher, Ashley King, Racheal Burston, Brynn Huso, Jess Mackenzie, Scott Thompson, John Cosgrove, Lauren Cosgrove and Damian Tait.
I’m not sure who else?
Sophia: who first? And I have to ask, is this a good use of our time?
David: I am not sure that it is a good use of time, but I guess I just have to do it. It is my life story after all. People probably would benefit from knowing who the people I knew were. They were a significant part of my life back then. And it will help me to tell the overall story. It will help to point a fuller picture of the whole situation.
Sally: Okay, that makes sense. And I guess a lot of the story of your health and associated issues are interwoven with the people you knew
David: Yes, that is correct. But more than that, this story isn’t just focused on my health. I just need to tell my story overall.
Sophia: Okay, let’s get in with it. Which name in the list so you want to discuss first?
I think that we should discuss Jesse Orchard first and then Natalie Hymers, Phillip Tiller and then Jenna Rowland-Skelton.
**
Jesse Orchard
David: I’m not sure where I should start with Jesse Orchard, because I can’t remember what I have said about him so far. And so I will check back at previous parts of my life story. I’ll take a look at the transcripts of the conversations so far. I’ll be back in about an hour.
Sophia: Okay, I’ll wait.
David: Hi, I’m back.
Sally: Hi David. I’m taking over from Sophia now.
David: Hi Sally, I just looked back at the other parts of the story that I have already uploaded and reread all of the stuff about Jesse and I am ready to keep on talking.
Sally: Please continue.
David: I keep on getting interrupted as I write. And so I forget what I’ve written or lose track of where I am. And then my mind is so fried a lot of the time that I forget what I’m writing as well. Due to both causes, I forget where I’m up to.
Sally: Okay, let us talk about Jesse. He was your best friend at one point. Wasn’t he?
David: Yes. He was. Although at the time, I would probably have said that my father was my closest friend. Let’s talk about Jesse.
I had health issues. He could have helped me and told me the truth. But he didn’t. That is the first thing. I talked to him about my health problems. I asked him for advice. I bounced ideas off of him. I tried to turn him into a confidante and potential advisor. He had recovered from CFS after all. But he didn’t help me. It would have been so easy.
We did play video games, card games and board games together. So I guess I just ended up with board gaming buddy. But what I needed was the truth about why I was getting sicker and sicker.
Anyway, I used to just text him out of the blue suggesting that we play Settlers of Catan. And so we would get together to play that. Me, Jesse and Natalie.
He was working at Dick Smith Electronics at the time. Which might be a little bit similar to a Best Buy or a Radio Shack. But it has been moving away from its roots as a true electronics store. It was a small shop.
Anyway, I thought he was a good friend. But it turned out that he was a really horrible person. But I just want to repeat that I talked with him plenty of times about my health. And I also spoke with his father on a number of occasions about my health (I will talked about that later). And his mother also.
His girlfriend Natalie was living with us, and so he was around a bit. Or she went over there. It actually worked out okay. But at the same time, there was some conflict. For example, when Amanda and I tried to get Natalie to do proper housework or keep her room tidy, she would complain to Jesse. Which I thought was odd. There were some awkward moments relating to the fact that I used to go into the room when she was out to open the windows and air the place out. And also that once I told her that she couldn’t go out to see Jesse until she did some basic tidying of her own room. She complained to Jesse about both things. Anyway, it wasn’t a perfect situation.
Jesse and I played some Warcraft Three Melee online together, and also some DotA and Battleships online against other people. And also over a hamachi virtual lan. But I really wanted to be back at university, and he knew that. But I couldn’t manage.
There was one more thing. From 2013 (or maybe 2014) where he drove me to a doctor’s appointment. It was just from Raumati Beach at 17 Princeton Road to the Raumati Beach doctor’s surgery. But I was quite unwell back then. He knew how sick I was. He called it “Jesse’s taxi service”. But as Christians we were supposed to do what we could to altruistically help other people.
I can’t remember how much I already said about Jesse orchard and cfs. So I will reread stuff and get back to it.
Jesse orchard got CFS. After having a virus. He claimed to have post viral fatigue syndrome. That then became chronic fatigue syndrome. The way I think it actually happened is that I think he has people hit him with electronic weapons until he is unwell, then he LARPs as having cfs. And then he did things like riding on an exercise bike to prevent de-conditioning. And then he consumes stuff like powerade to restore electrolytes. What else? He would do balance table, tilt table training. Which just made him dizzy. And he would visit Dr Peter Roberts. And had lots of blood tests, and saw the doctor a lot. And he went on the dole. Natalie stayed with him, in a relationship. Which was nice of her. He also played too much wow. Eventually recovered. The way that happened is that he went to a counsellor, and the councillor told him to play less WoW. And also prayed for him. And then he recovered. Just suddenly. He said it was like
He quoted the verse, "Those who trust in the Lord will renew their strength; they will soar on wings like eagles; they will run and not become weary, they will walk and not faint." And said that that was what it was like. He said that particular verse while we were all at a Bible study at Jared and Amanda Doncliff's place on Chums Road. Jared and Amanda used to go to the CCC. Jared also played the bongos in the worship team. The church band btw. They all knew that I was sick by the way.
Mention Jesse and bass at the church.
And also mention that he pushed Doctor Roberts. I think?
Maybe add in a few…
[[[[[[And that’s me for now]]]]]
Ben Jack was at my wedding, as was Scott Thompson.
Other topics:
The Alexander technique
Semi supine, aka constructive rest
Random stuff:
Sometimes Sunday lunch was at someone else’s house. Like John Cosgrove or Aaron Oldcorn’s. Mention that the first time you visited Aaron’s house as a teenager, he microwaved a pie for you. I’m not sure if this is a metaphor/symbol, or just a pie. Max Macfarlane introduced Aaron to you.
I used to play games like Dr Robotnick’s mean bean machine with Jenna. It came bundled with a sonic the hedgehog retrospective on ps2 that we had. That’s a fun game. But mostly it’s just sociable. Jenna was flatting with us for quite a while. That game is similar to pvp Tetris.
Natalie and I both used to enjoy Warcraft. She was flatting with us. Digression on Natalie goes here. We had been friends and colleagues at school. We both worked as cleaners, and she went to the youth group at the ccc. Her mother and step father were bad people. They smoked meth. They neglected her and her brothers when they were growing up. She was often underfed or fed the wrong food. She overate as a consequence and was somewhat over weight. They actually used to do stuff like sell her possessions to buy drugs. Ummm. She didn’t know how to live in a house. She had belongings that were growing mould. Her mere presence harmed the house. I put up with her out of compassion and altruism. I wanted to give her a chance to learn the basic skills of dwelling in a house. Moral of the story is… I dunno. Just because someone has been treated badly and raised wrong it doesn’t mean that they want to treat people well instead of badly, and that kindness towards people from horrible backgrounds isn’t always understood or rewarded. The things they do don’t make sense. And being kind and compassionate doesn’t compute with them. I think she got offended with me for trying to work with her to do things like… open the window instead of letting mould grow in the walls… there was something rotting and dead in her drawers and other bedroom furniture too. And her clothes were filthy and she just didn’t take care of her space properly. She got so upset with me for things like going into her room to open the window. You have to air out a room! By the time she quit living with us (for the second time) she had learned to keep a room clean, ventilated, and slightly warmed. And also to vacuum and pick stuff up off of the floor. I think that she was offended rather than grateful. But when she showed her bedroom to Jesse, she was proud of having a clean and tidy room for once (eventually). And also she didn’t understand how much grace, compassion and kindness were being offered to her by letting there live there and to have stability for so long. I had to argue with our landlords to let her stay. They wanted her out. If I could do it again, I’d have kicked her out in 7 days flat. She could have told me at any point that I was suffering serious physical harm because of satellites and cell towers, and that this is why I was forced to drop out of university. Twice. She was living with us in 2009 and 2010 iirc. And she knew what was wrong. Furthermore, she was dating Jesse. Helping people is risky.
Jenna was messy too, but nothing ever went damp and gross. Or very seldom. I think that she just tolerated mess but not extreme filth. In my opinion, it wasn’t good enough. But I let it slide. She was Amanda’s friend anyway, more than mine. I had to pester her about NO FOOD in the bedroom. According to Amanda, Jenna’s father was “abusive”. But I don’t know if that is true. Jenna went back to live with her family after a while. According to Amanda, Jenna’s father has alzheimers due to alcoholism. I wonder if that is just a lie, or a metaphor.
What else? Phillip came to live with us. And he just played games all day. He was physically feeble and somewhat over weight. He worked at the video shop two days a week. He was enrolled at university, and didn’t bother to attend. He just played video games all day. He sometimes played Catan. He was my friend though, and our flatmate. I liked Phillip. Aaron Oldcorn introduced me to him in high school. Phillip enjoyed playing a little bit of Warcraft (custom maps) with us. Which was nice. I tried to get him to go to church with us (I was the… nag and invite and invite and invite people to church guy). But church wasn’t his thing. Also I invited a few friends to the alpha course, held at a local cafe. And they came to the intro evening. But I can’t remember who!? It might have been Phillip or Aaron. I think that it was Aaron. Anyway, they weren’t interested in Christianity. I care about people, and believe/d back then that altruism, compassion and kindness are good things. And I believed all of the Christian stuff, and literally. And including all of the supernatural stuff. So inviting people to church was important. What’s next. Phillips and the others dragged their feet on cleaning. That was a bit of a debacle. I had to battle to get them to do basic chores. In the end we hired someone. Also, my health and my back were getting so bad that I couldn’t really do it myself. If I “pushed through” it cost me in symptoms and health.
John and Lauren Cosgrove moved back to Otago. John had foot problems.
I did most of the cooking in Weka Road. But the flatmates were fussy.
I used to go for walks with Phillip, to talk. By the way, there were one or two summers where going for nice and relaxed walks was possible.
We briefly had a few other people to stay or visit. Some other flatmates.
Umm. That’s enough for now.
Insert a few things here regarding family. Also, getting blanked while out in Wellington with Uncle Andy.
Uhh. My flatmates all knew that I was sick. And they all knew that I dropped out in 2000 and 2010 because of it. And they knew that i had chronic fatigue syndrome and what caused it. Phillips and Natalie were there when I dropped out in 2009. And I think that they were both living there when I dropped out again in 2010. They were both friends. Jenna lived there also in 2010.
Philip drank almost literally nothing but coke and monster/mother energy drinks. I struggled to get him to drink even a cup of water. He wouldn’t even touch broccoli. And he would act like he was dying if he attempted to eat it. He wouldn’t eat potatoes. He didn’t eat beans. And he would pick them out of chili con carne and nacho beef (we had a lot of mince dishes). He hated mashed potatoes and roast potatoes. He wouldn’t eat my (immaculate and amazing) crispy, golden roast potatoes. They were amazing. And usually roasted in ghee (sometimes rice bran oil or olive oil). But he turned his nose up at them. Anyway, he dropped out of university.
What next?
To the reader, I am still working on this. It is a work in progress.
John Jennings, and my attempts to find a mentor and advisor. A good Christian who was older and knew a few things about life.
And Jesse orchard and cfs. Talk about that.
Jesse orchard got CFS. After having a virus. He claimed to have post viral fatigue syndrome. That then became chronic fatigue syndrome. The way I think it actually happened is that I think he has people hit him with electronic weapons until he is unwell, then he LARPs as having cfs. And then he did things like riding on an exercise bike to prevent de-conditioning. And then he consumes stuff like powerade to restore electrolytes. What else? He would do balance table, tilt table training. Which just made him dizzy. And he would visit Dr Peter Roberts. And had lots of blood tests, and saw the doctor a lot. And he went on the dole. Natalie stayed with him, in a relationship. Which was nice of her. He also played too much wow. Eventually recovered. The way that happened is that he went to a counsellor, and the councillor told him to play less WoW. And also prayed for him. And then he recovered. Just suddenly. He said it was like
He quoted the verse, "Those who trust in the Lord will renew their strength; they will soar on wings like eagles; they will run and not become weary, they will walk and not faint." And said that that was what it was like. He said that particular verse while we were all at a Bible study at Jared and Amanda Doncliff's place on Chums Road. Jared and Amanda used to go to the CCC. Jared also played the bongos in the worship team. The church band btw. They all knew that I was sick by the way.
Next, health issues. I found that I couldn’t sit comfortably in a chair at the Bible study. And I started to get less and less comfortable. And started wondering what I should do next. I had back issues. I couldn’t even really do Bible studies. And it was the spine thing. The back tightening thing. And the long term changes associated with it. I’ll talk about that more later.
Next, Damian. I taught a guy to cook. He was weird. He was Amanda’s friend. But I taught him to cook. He allegedly had Aspergers. But he had left home not knowing how to cook. So I taught him to make spaghetti Bolognese and roast chicken with roast potatoes. And so we worked on it. I dunno. He was kind of odd.
Jesse Orchard and Aaron Oldcorn had a long conversation and conflict over who was driving when they got a ticket going to the Parachute Christian music festival back in 2008. It was important because it was expensive, but I also thought that it was important because Jesse was a Christian but Aaron wasn’t. And I thought that Jesse should just let it go.
Mention Daryl and Natasha. And spending time there. And that Daryl was an Anglican lay minister. And mention that Amanda would go to church stuff with him. Etc.
[[[resume writing here]]]
****
****
On one occasion my friends came over to Dale road while staying with Amanda and her family. Jesse has cfs by now.
All of the thoughts a jumble at the moment.
Jesse Orchard had cfs. Explain that. Check to see if it has been explained elsewhere. He gave me idea regarding that.
We lived with Natalie in the house. She was my friend and former work colleague. She was also Jesse’s friend and later married him. She was the child of methheads. The child of serious neglect.
We lived with Jenna.
Jmmmm. They all knew that I was unwell, but didn’t help. I was so sick that I couldn’t do anything physical.
At some point Graeme and Hayden moved in. But I forget when that happened.
They could have just told me anything at any time. But they didn’t.
Talk about grandparents and Dale road:
Staying there
Having dinner there
Perfect for parties
Christmas iirc
Natalie’s summer party (summer bash)
This was the get together she has every year, and has 60 people invited to it. I went.
Having friends visit.
Receiving guests
Weekends
House sitting
Studying in the sun room
Raiding the pantry for cashews and dried apricots.
Walking Roxy
The noisy bass player next door
I was part of the family, which was weird. But they welcomed me. I was like the odd fundamentalist Christian who married into their family after Amanda converted to Christianity. But they out up with me!
And I met Lou there. At their summer party.
And later on, add in Guildford drive.
Add in stuff about Dale road. And that I stayed
Add in stuff.
And yeah, so I went weekends in Paraparaumu.
And we went to church together. We still saw our mutual friends. Crazy. Right?
**
Next we talk about family. And the social connections there.
Intersperse talk about health talk in these segments.
Yes. I even had them drive me to appointments. But that’s a story for another day.
The next topic is friends, family, my wife Amanda, church people, the elders and so on. I want to talk about the people I went to for help. And the next topic after that is all of the stuff I tried. In order to get healthy again.
*****
*****
Let’s talk about friends?
Where do you want to start?
Let us start in 2009, or actually late 2008.
I was quite isolated and didn’t socialise much back in Wellington. I needed to see my friends more. And I missed my family.
I never got familiar with a church in Wellington. Amanda and I used to go to church in Paraparaumu on the weekends sometimes in 2008. From Wellington. Sometimes we went to the CCC and sometimes we went to the Anglican Church in Raumati Village.
I moved to Paraparaumu. And one of the benefits of this was that I could see my friends more often. And also that I could go to my usual church. Which was great for my social life.
Okay, I’m going to talk about my friends a bit. I sometimes went to them for advice. And also spent time other then after I was unwell. My health problems affected my ability to socialise.
Let’s talk about it.
I went to my friends for advice. We talked about my health problems a fair bit over these three years (and before and after). And so we can talk about that.
Jesse Orchard pretended to have CFS. Although I think that they induced it in him with machines. But it was a major plot feature. He reckoned riding a stationary bike was the best idea. And he also drank Gatorade made from powder, for electrolytes and uses a balance table. I went to him for ideas. We also used to go to a Bible study with Jared and Amanda Doncliff.
Next friend Scott Thompson. Took him to the harvest even with Greg Laurie. Advice, yoghurt and buckwheat. As advice. Not a big advice guy though. But one of the only friends I made in university.
I don’t know if I got tons of advice from him??
Matthew came to stay. For 9 weeks.
Explain story. Falling out with Dad.
Friends
Family (including my in laws)
My wife
Church and elders
Prayer
Ideas from books and websites
Things I tried in order to get well
Overall, the story of how I felt over those three years
Include the story of 2010, and dropping out for the second time.
Mention the Vanuatu trip
I felt good on the Vanuatu trip, and believed that it was due to good weather. And then for a long time after that, I wanted to go back to a place with warm weather. But I couldn’t. I thought that the tropical weather somehow magically made me better. I’d felt so much better that I’d have wanted to move there, if it would have made me well! Simultaneously I had bad digestion. And so for years later, I wanted to move to a place with warmer weather.
**
Fin.
Notes:
So many notes will be included!!
For prayer meetings, just say I attended a few prayer meetings at the local Pentecostal church. And one at the southwards movie theatre.
Add this into the mix. Pretty shattered at the moment.
And she later tries to get me do so antidepressants and also cbt and get.
My doctor tried to encourage me to go into anti depressants. I had said that I wasn’t depressed! I didn’t need to be on anti depressants! That’s bogus.
She was treating my physical illness with physical symptoms as a psychosomatic or psychological disorder. And out a lot of pressure on me to go to a psychologist. She also put pressure on me by threatening to not give me medical certificates to get the sickness benefit! She is a bad woman and a bad person.
**
What did my in laws think?
Terry thought that I should get a light box. That is something that you do for depression. I was actually a little bit insulted by this suggestion. Because I knew that I had a lot of physical symptoms.
Amanda’s nana seemed to be kind. But acted in a supportive (ish) manner. And she tried to make me feel welcome as a part of the family. We went to their place for dinner often, and stayed there often too. Amanda loved her grandparents.
She also suggested that I do the “lightning process”, which is a psychological method.
Lesley has ideas or advice. She suggested a diet or two. And knew I was unwell. I am not sure what her ideas were. I have forgotten.
Matthew stayed with me in the summer of 2008/2009. Or around then. He could have told me anything. I forget exactly when.
I will discuss this later.
I talked to my grandparents and nana about my health issues.
Jesse orchard had chronic fatigue syndrome. And so did his brother. I will talk about that later in the page.
I sometimes went to him for advice. He seemed to think that tilt tables, stationery bikes, drinking Powerade for electrolites. That these were the best ideas. He recommended Doctor Roberts to me.
Nathan and Aaron both know that Jesse and I have cfs. Both Nathan and Aaron came over to visit me and Amanda at places like Amanda’s grandparents, iirc. Ditto for Jesse.
Jesse lent me a book with the title “I’m not crazy, I’m just a little unwell”. About during cfs with a GTT test, and regular low gi snacks and stuff. You eat frequently and then feel better. So I tried that.
****
****
Trying to figure out what was wrong:
And so I went to fight to figure out what was truly wrong, to do some blood tests, and to try to figure out what I could do. And how to solve it.
I wanted to know what the underlying problems were.
But the many blood tests I did, they didn’t really help. I have my medical records (some of them) on a previous page.
****
****
Church, Elders, Prayer Meetings
[[[ here is the bit where I talk about church, going to church, asking church people for advice and help, asking the elders for help, and prayer meetings]]]
I asked the elders for advice. And Geoff. I had them pray for me. And I went to a Pentecostal healing meeting or two. With travelling pastors etc.
I talked to people at church asking for advice. In general. Delwyn and Jennings.
I invited Stan over when crisis of health, I went to dinner at John Jennings place. And had him over.
****
****
In general, stuff I did to try to get well. And fight to improve my health.
Self help:
I tried to use Bruce campbell’s self help methods, which talk about “pacing”. But they didn’t help. It was sad.
They had concepts like, staying inside the “energy envelope” and other such things. And how important it is to avoid PEM, and how bad GET is. And how “bad pushing” through is. And how to keep records.
It is crazy stuff. Given the actual root causes of the health issues.
Give an explanation of graded exercise therapy.
The Alexander technique.
This needs to be a segment. It is an important one. Black box it? No. Just do a quick description, and then talk about the effects.
****
****
Chronic fatigue syndrome
My being sick
My not recovering
Dr Amanda Clark, General Practitioner at KYS
Specialists at Wellington Hospital
Dr David Waite
Dr Peter Roberts
Dr Alistair Neill
My many physiotherapists
CFS self help materials, produced by Bruce Campbell from Stanford University
The book about CFS “I’m not crazy, I’m just a little unwell”.
Doing a Glucose tolerance test
Low GI eating
Gluten free diet
Chronic Fatigue Syndrome and people not believing me
People suggesting, insinuating or acting like I was suffering from a psychosomatic illness
My attempt to return to university, and dropping out again.
My experiences in attending healing meetings at Pentecostal churches
My experiences talking to travelling evangelists about faith and faith healing
Asking my local church’s elders to pray for me, going to the elder’s Tuesday morning prayer meeting to ask for healing
My social life at the time in which the Sunday morning church service, Sunday lunch and playing cards, board games and video games featured heavily.
John Jennings and trying to find a source of good counsel. A reliable Christian man.
Visiting my mother down south once or twice; going to Aunty Wendy’s place
Being cold a lot of the time, and my struggles with that. Being cold, my cold house, the cold weather, firewood, problems with firewood, and the fireplace. Needing to have the fire lit to get warm, other types of heat that weren’t enough.
Always trying to get sun so that I could warm up. But always being cold! I think that they were often making me cold by means of cell tower cold rays.
My love of the sun room.
My relationship with my in-laws
Lesley acted like she likes me when we first got married!
Amanda didn’t want her father to “give her away” when we got married.
I liked Darryl and Natasha.
Lesley was okay, but weird!
Vanuatu Lesley tantrum.
Learning to cook
Having a gluten free diet
My relationship with my grandparents
Their driving me to appointments at hospital
Their putting me on their church newsletter’s prayer list
My own church putting me on their newsletter’s prayer requests list
The label cfs itself
Everyone knew that I was unwell, but no one told me
Delwyn at church for example
Trying to get involved with church youth group
A sleep study at Bowen hospital (a private hospital in crofton downs).
My ex-wife claimed that she had been sexually molested by her step father in her youth, and that was why she was crazy, and why her teenage years had been kind of horrible.
Amanda and Christianity
My aspirations, and the books I read back then
Desire to become an inventor, scientist or engineer
Ministry books and Christian books I read: if I ever become healthy, what do I do next?
Education: architecture, engineering, criminology, education (a little), economics
David Waite (the youngster): not sure what that was all about
Scott Thompson
Supplements and quack therapies in general
High fibre diets, and foods with a natural laxative effect: kiwifruit, prunes, plums, brown rice, buckwheat porridge, and a few other things.
As a note: talking about our wedding and all of the stuff involved, a recap of the wedding itself
Jared and Amanda Doncliff and Bible studies
Austrian Economics, libertarianism, Ludwig von Mises website and notpc and ayn Rand.
Blogs about diet, nutrition as health.
Being cold a lot of the time
Talking about my symptoms in general
That’s all for now.
It might include things like the Gokhale method, the Bowen Technique, and other therapies and methodologies. But I haven’t decided exactly how much to write yet.
Some of this stuff probably bleeds into 2011 and 2012.
Sally: that seems like a lot. I feel like you might be writing for a while!
David: yes, it might take some time. And I still need to edit the transcript from part one of my life story.
[note to the reader, I uploaded parts one and two of my story in a hurry, because I wasn’t sure if I could get them finished at all, so I just wanted to get something out there] I guess I’ll edit them sometime soon. I also need to get some stuff done with welfare payments.
A few brief notes about the story after parts four and five:
Please treat this as off the cuff remarks
Next part of the story, is that I have chronic fatigue syndrome.
And I am running about asking for help solving that problem.
"I have chronic fatigue syndrome".
I talk to my family, I ask for their advice. And I talk about it with them. And also they give me unsolicited advice.
I talk to my in laws, I talk to my wife. I get their ideas and potential solutions, and advice.
I talk to multiple doctors. I talk to my GP Amanda Clarke. She refers to "some friends she knew from university". Including dr David Waite, and dr Roberts. She also sent me to a physio, TBI.
I had already talked to multiple doctors before her. Such as one at coastal medical rooms (twice). And three (or four) at Victoria University.
I tried physio, and I just got me hurt.
I talked to my friends, including Jesse and Nathan. They knew I had "chronic fatigue syndrome". Jesse had a diagnosis of post viral fatigue. His elder brother had had cfs as well, and was very sick. Their father Geoff (now chief elder, aka pastor, at the ccc) also talked with me. Multiple times. I also attended their early morning pastors meeting to have them pray for me. And he also gave me a book to read and "pray through" all about how evil Freemasonry is. Which I did.
I also attended prayer and "healing" meetings at odd Pentecostal churches. Because David Orchard had been healed at one of those. Furthermore, I went to weird sessions at places like... okay. There was a "healing rooms" session at southwards car museum (they have spare rooms) where an oddball dude prayed for me.
I went back to university in 2010, but had to drop out. I was still sick.
My social life? I went to church, and some of the same friends as in high school. And we had lunch together after church.
By the start of 2011, I was still unwell.
I didn't get healthy again!
I didn't know what was wrong or what to do about it!
I will work on writing up more stuff.
**
Parts 7 and 8
2011 and 2012, and into early 2013
I had really bad back problems and digestive problems. But still had the chronic fatigue syndrome. It was horrible.
I kept on seeing people to ask them for help. My grand parents drove me to the hospital for one or two of my doctor's appointments. By the way, dr Roberts, dr Waite, and dr Alistair were at the hospital in Wellington.
My grandparents also put me in the prayer list for their church, asking that I be healed of chronic fatigue syndrome. I also had my name put in our church newsletter, suggesting that people pray for me that I be healed of cfs.
I actually got worse in this period of time. Quite a lot worse.
Part 9: 2013
I got way, way worse. Bad digestion, bad sleep, bad back, pain. Saw multiple physios. Could no longer lay in bed to read, could no longer curl up on the couch to read. I even had to cut down on frequency with which I showered.
I couldn't read any more!!
The era of listening to podcasts began, and I literally had NO WAY to find a comfortable position in which to rest. There was no way to chill. It was cataclysmic.
And then I had to move house. We got kicked out. I was actually struggling to function at the time. My back was borked and I didn't know why. Hint: cell towers did it.
Part 10: mum comes to visit, stresses me out in purpose (I was barely functioning beforehand). She pushes me to see a doctor, and the doctor gives me drugs that make me worse (was a family friend). And that plus cell tower attacks and long standing health issues cause a "mental health event". And then life is bad. Will explain more later. Nortryptaline and then quetapel. And they push me to be involved in mental health services. But I don't want to be. Because my issues are back problems, cfs and digestion. Amongst other symptoms.
So anyway, I can't really sleep in bed like a normal person. I have to lay weird to rest at all. But idk why. Also, my relationship with my mother is toast (again). I also end up taking long term supplements my mother gave me (xtend life multivitamins). I am actually not explaining well.
And that gets us to maybe 2014.
There is so, so, so much to explain.
Like I couldn't lay in bed to rest in a normal way on my back or side. If I tried, I would get my spine. I just couldn't rest on my back. They had changed my torso so much long term. Also, laying on my side didn't work either. I actually dislocated my shoulder (mild dislocate) laying on my side. It's awful.
I also did a lot of Alexander technique.
Part 11: 2014 onwards
Umm. I then also build up a lot of walking. Somehow by forcing it, I could do walking every day. And I built up. Eventually to an hour a day. Every day, even if just two minute, I forced myself to walk. And built up, lamp post by lamp post. Until I could do up to 60-70 minutes. I was feeling so much improved. And then something changed?? And then i couldn’t walk anymore. And I was limping. And I couldn't solve it. And then I ended up not walking. I couldn't manage! The delicate balance was disrupted by cell towers. And talking was finished.
Also, sometimes I had entire weeks, or up to a fortnight, vanished in black fog. I think that it was cell towers. I think they hit me with mind cannon attacks for two weeks in end. I mentioned it to Carolyn. And she tried to tell me that it was depression.
By the way, I could often force myself to lay down and rest, while listening to podcasts. It was the only way to control the situation enough to rest. I will explain later.
**
Oh and my father also used to tell me that it was basically psychosomatic, and that I just needed to do the “lightening process”. Which is a psychological method to get rid of psychological problems. He reckoned that it might be “just depression”. That happened a bunch of times.
He very, very, very strongly pushed this thing called the lightening process. Look it up.
He even gave me a copy of the book “oh the places you will go” by Doctor Seuss, with a brief note in it suggesting that I should do the lightening process. And offered to pay money for it. Amanda’s grandparents and also my aunty Wendy pushed it as well. The course costs $500+ dollars.
One of the things that drives me nuts is that I can’t remember if my father said to me that it is just depression. Or if he just floated the idea to me. I think that he may have said, “are you sure that it isn’t just depression”. But he said a lot of things.
My memory isn’t perfect.
But what I do know is that he didn’t acknowledge that I had organic physical illness. But anyway, I’ll write stuff up.
He very, very much implied that it was mental issues. And he didn’t acknowledge the existence of a physical illness. And this was extremely upsetting to me. Because my father and I used to be close! And I had been sick for a long time! He just didn’t believe me! Furthermore, looking back, he knew exactly what the cause was (cell towers and satellites) and he could have told me AT ANY POINT. Which is crazy.
Please forgive me for deliberately bad phrasing and silly use of words here:
Whatever “gestalt vibe feel” these people have given you, when it comes to my relationship with my father. Or the overall attitude of perspective you have been given by them towards my story: reject their perspective, mood, tone and attitude. You will have been misled. Whatever feelings or attitudes, they have lied to you. Very much.
**
There is plenty more writing to do.
Talk about how horrible it was back in Princeton road when I couldn’t read anymore. And the stretch laying thing. From the gokhale method.
Notes: Add in more about the wedding, and the wedding vows. And the ceremony. And the marriage books. And Mike hocking.
Amanda stayed with me.
We were Christians. Got married.
Sickness and health, richer or poorer, till death do we part, better or worse.
Some people split up, but Amanda didn’t split up with me. I would have done the same for her. Blah blah blah.
So put a good chunk in there, but write it in your own time and in your own terms.
Going to church, and getting blasted in the pews by electronic weapons.
Seeking out help and support from so many people it isn’t funny.
All of my friends knew I was sick. By the way. All of them.
Trying to do web design and hating it. I hate html and JavaScript.
Notes: Attempting to get into programming. But I had back problems. And so I ended up setting that desire/goal aside (I really loved programming though: I had just got into c++).
Amanda and I volunteered at church, and got involved in youth group. Rachel joined us for a bit. All three of us went to meetings, and helped out with stuff. In one event.
I was surprised that Rachel was allowed to get involved, because she was such a secular person. (Read: shady).
Also, mention training for the worship band. But not doing it. And also mention the time I tried to get further involved.
And also tithing.
And include Jared and Amanda Doncliff
They very much pushed the psychological angle: “feeling very frustrated”
I asked him to take antidepressants again. He wasn’t keen. April 2010
A couple of months later, May 2010.
“I am a little frustrated…
Discussed with David my frustration
Doctor, Indian woman, back in Victoria University.
Gives me Prozac. 2007
Later on, David waite prescribed me a tiny dose of amitriptyline. Tells me that it is a tiny dose. Almost homeopathic he tells me. He is the neurologist.
i tell him that I’m not keen.
Problem is that this adds a mental health or psychology drug to my records.
22 April 2010
Amanda Clarke,
She said “a little frustrated by lack of suggestions to help David” in notes. Suggested that I try another doctor.
26 April
She suggested that I try amitriptyline, I said that I wasn’t keen.
6 May
Also suggested that WINZ might pay for psychologist and specialist case.
“Discussed with David my frustration at suggesting things to try (antidepressants/psychologist/councillor) and him turning everything down flat. He says that if it is an issue he might consider rx [the prescription].
Need to do story up properly. They don’t address actual issues! Don’t tell me what is wrong!
The mental health stuff comes to the fore later. But definitely insinuation that it is a mental health problem. Doctor Amanda Clark obviously wanted to get rid of me. She’s a bad egg. I don’t like her.
She definitely wanted to make me move on.
I reckon that the mental health angle needs a note.
And Amanda Clarke will need a note before it is all finished.
What else?
The next year, in 2012, I was really unwell it was horrible. I had massive digestive problems, big back problems and plenty of more symptoms.
Talk about settlers of Catan and friends. And bang. And problems associated with sitting there! And back problems.
Then later I tried this thing called the gokhale method, which wasn’t so good either. I will talk about that a little further down the page.
And then gave that up for the Alexander technique.
I have had a horrible time of things.
I also tried cranial sacral (in 2012 or 2013).
At the age of 21/22 I couldn’t even play catan or cards.
Not without major symptoms.
They did back tightening things. Not that j knew it.
At age 17 I was an uber fit boxer. And at 18 I lifted weights.
But at the age of 21/22 I couldn’t even play catan or cards with my friends after church worthy experiencing symptoms.
I had to pace myself to play cards or board games. I had to take a rest half way through.
And I struggled to manage to do, or even had to skip, things like poker night with my old high school friends because I was too unwell. I think I went to poker upstairs at orchard joinery only once or twice. I would have loved to have gone every week. But I couldn’t. I would have loved to play more settlers of catan
**
The main cause of symptoms and issues was that they harmed me by remote control. There was lots of harm.
And I was getting worse… I got worse because they kept on damaging and harming me. And the doctors wasted my time and undermined me. And the physiotherapists waste my time. And make me a bit worse too. Which isn’t fun.
But I decline. And it is the electronic stuff. I’ll write more about later.
**
I once tried to help someone with their economics homework. And I couldn’t. Because I had to sit at the desk to do it. They fried me. It is so sad . My back was so clamped shut it was useless. I can’t explain it. It was really upsetting. And I didn’t know why Inhad those symptoms. I didn’t understand. You can look it up, I think.
***
I got worse over time. I also often went to my family for advice. Including my mother and father, as well as even my brother sometimes! I also went to my in laws and my friends for advice. I was part of Amanda’s family, and they treated me like family. Furthermore, Jesse Orchard (and his brother) had “Chronic Fatigue Syndrome”, and so I asked for advice from him. Jesse was one of my best friends from school. We had known one another since 15. He even drove me to a doctor’s appointment or two. Including one at the age of about 24ish?
I always wanted to know what was “wrong with me”. It was a common topic of conversation.
Also, I didn’t socialise very much at university. I was sick.
**
Bottom line: there is a whole lot more to talk about! And we are just getting started.
**
Notes: mention Christmas with Amanda and in-laws. Christmas was very important for Amanda and her family.
*
Notes: Amanda and her double life
Don’t over explain this sort of thing… because they already know.
This next bit is still being drafted, but will probably make it into my notes.
Next topic, Amanda was not a Christian, and was not faithful. She was irreligious, and living a double life, functioning as some sort of a communist and/or prostitute, I gather that she used to sleep with an enormous assortment of other people, both men and women.
**
I don’t know why she did that. We always used to say to one another things like, “I don’t know why people cheat or commit adultery. If you don’t like someone, just dump them. Then sleep with other someone else. It’s not that difficult.”
We also used to have fairly serious and fixed ideas about divorce (divorce is a bad thing, and you’re not supposed to do it, for religious reasons, it’s a sin).
**
Next topic, she stayed with me after I got sick. At the time I assumed it was because we got married, and because of our marriage vows. We did promise to stay together till death do we part, and for richer or for poorer and in sickness and health.
You make vows, and keep them. It’s not that complicated.
**
Well, now I sort of know why she stayed with me and why she was cheating. It’s because she was a communist activist. They do deranged things for stupid reasons.
**
Notes: Add in a note about Jo Dacombe
Notes: do a note about not driving. And why. I did learn a bit. But oh well.
**
Notes: And more stuff about computer games, such as playing dota and back pain. And then also morrowind and back pain. And sweating. And how I sat in the chair. This might be a long addendum. And then the bit about beanbag and trying to watch DVDs. But I think that this part was in 2012
Notes: natural selection and the pug server. In 2009 got the pug server going. I was playing games in 2009! I can’t remember exactly when that became a problem. Talk about natural selection. - maybe place this up in questions.
Notes: mention in a note the engagement party, unless I already mentioned it. We also had our engagement party at Amanda’s mother’s place. In 2007.
Notes: write a better account of Amanda and I and our relationship and marriage, and especially our wedding.
Notes: we got married because we were hardcore Christian (better wording is serious Christians, or genuine Christians, true believers) and you’re not supposed to have sex or live together if you’re not married. More discussion of this later. Amanda was of course a fraud. But there is more discussion of that later.
Notes: I loved my father. Here is a clip of us together when I was young (about 14). It gives a good example of what we were like together and what our relationship was like and how close we were. Note: I was acting silly because we had a video camera and because I was young and because digital video cameras were new! Or new to me! Or something like that! I know that this reaches way back into the past, but I wanted to put it somewhere.
https://youtu.be/otgRKVXKrnU?si=a9RVkLZ1DK6m1d3F
****
****
Amanda and I getting married:
Amanda and I got married because we were hard core Christians. True believers, or so I thought. And as Christians you're not supposed to have sex if you're not married.
And so that is why we got married.
Now unfortunately it turns out that Amanda was living a double life. And was a bad egg. And wasn't interested in Christianity at all, and believes absolutely none of it, and was dishonest to the core.
But such is life.
*
Some of that is "gist-level-truth", not "quibble-proof-truth". Which has become my new general disclaimer.
***
And I loved Amanda, and cared about her.
^ I have to it that sentence in somewhere.
**
She was mentally ill, or disturbed or something. Or that was what I believed. The truth is that she was just a dishonest person who pretended to have been harmed badly in the past, to gain sympathy.
***
Also, don’t forget that this whole situation was designed _originally_ by my father who molested young Asian girls who he coaches in table tennis. Like actual children.
(Technically half Asian).
More notes:
Lloyd works at and I think owns a local embalmers and/or funeral home. Joanne works for ngos. Used to work reserve bank nz, now works for autism nz. Stan runs a place that designs kitchens and bathrooms, does joinery and carpentry. Geoff owns orchard joinery, the same one that Jesse and the guys from high school used for poker night (they had a staff room upstairs). I played poker once up there and Catan once.
Stan baptised Amanda back in 2007, after she had completed a pre-baptism course. He was her favourite elder. He makes a couple of appearances in my life. He was my favourite elder too.
Jo Dacombe used to drive me to church. But I think she is no longer affiliates with the church. Maybe she and Lloyd split up. I’ll check.
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