Pain Scale

That Darn Pain Measurement Scale

Let’s talk about the pain measurement scale. Oh, this is a dangerous subject, isn’t it? I feel I am bound to upset someone!

Different people experience pain differently. Bottom line, it is subjective, there is no way around that. I suggest there is double subjectiveness happening when we try to “measure” pain. There is the patient’s subjective assessment of their pain, then the clinician’s subjective interpretation of the number provided by the patient.

Medical science has given us fantastic innovations. X-rays tell us very quickly if a bone is broken. We can quantify temperature and blood pressure. But not pain. Modern MRIs, CT scanners and ultrasounds let clinicians assess things their predecessors could only dream about imaging 100 years ago. But not pain.

When nurses and doctors go through their training, they aren’t at any point hooked up to a machine that inflicts level 10 pain. So if I say 10 to a doctor, how is that interpreted? I suggest if the doctor has experienced severe pain themselves, their understanding of what that 10 means is going to be better, irrespective of training, than the understanding of a doctor who has experienced nothing more that a vaccine injection or a blood test. Yes, of course lectures cover “bad pain is really, really bad” and they see patients in excruciating pain after car accidents and fires and so on. I’m not saying they have no idea: but it is different to personal experience.

Neither, of course, are patients ever “instructed” via a machine “this is a 10, for future reference”.

For every single one of us, the zero is about the only value on that scale we can all categorically agree on.

If the most serious pain a patient has ever felt has been the prick of a blood test, a broken toe is going to be, in comparison, quite painful. We assess pain severity based on our personal experience because we have nothing else to go on. Whenever I tell a clinician my pain is an 8 or above, I qualify that statement with “for me a 10 is waking up from my hysterectomy”. I’ve related before about telling my GP on one occasion my wrist felt like someone had stuck a scalpel in it and when I saw the look of “oh yeah, right” on her face I followed up with “I stuck a pitchfork right through my foot once”. Her response was, “You know what a puncture wound feels like”. Yep, I do. My foot ended up almost the size of a football. Not fun.

Yet the scale we have is ……. what we have, at this point in time. I like to think that at some future point in time we’ll be able to measure pain using some form of medical technology. I’m completely theorising here, but maybe image brain waves or tap into nerve activity in some way.

Anyone understands that undergoing surgery, being “sliced & diced” as I call it, is going to be painful. so we have anaesthetic and let the patient “sleep” through the procedure. So even if a person has undergone surgery, they didn’t actually feel it. Post-op? Well, I know from my own experience that can either be quite painful or virtually pain-free. My bilateral foot surgery post-op recovery, for example, was virtually pain free. That was a big yippee from me, let me tell you.

Childbirth is painful. Has anyone seen those clips of men subjecting themselves to simulated contractions? Whip through to about 16:40 if you want to see just the reactions.

Maybe all clinicians could be subjected to something similar as part of their training. It is OK, I’m not serious – well, not really anyway.

A doctor said to me recently, personally experiencing pain (the doctor had hurt their back) gave a bit of a new perspective. I didn’t mean to, but I did laugh, because while I’d been thinking of this article since I was last in hospital and took the picture of the pain scale featured here, I didn’t have much experience other than mine own, or my GP’s and my chat about childbirth, to use as illustrations! That one sentence essentially supported what I am saying: experiencing pain personally provides an otherwise only imagined experience. Reminded me of a situation over forty years ago in a maternity hospital. I was lying in my post-natal ward, a new Mum arrived in the bed next to mine. Seemed very distressed. Not the usual new Mum demeanor at all. Somewhat concerned I went over to her and asked if she was alright, could I call a nurse. No, she told me, following by, in hushed tones, “I’m a midwife. I can’t believe how tough I’ve been on my patients.” That’s not verbatim, my memory is not that good after forty-odd years, but she did go on to talk about, yes, you got it, pain. Her perspective was now rather different. She swore she would be a much better midwife in future.

Even if we could technically quantify pain with a machine, that would not completely solve the problem. We all have different pain tolerances. By that I mean, if we could use a machine, it might determine that the pain is technically a 5. One person with a high pain tolerance may experience that as only a 3, while another may experience it as a 7. Think about sweetness. One teaspoon of sugar is one teaspoon of sugar. Yet to one person a teaspoon of sugar in a cup of coffee or tea would be horrendously sweet, while another would need another teaspoon. Absolutely nothing has changed about the sugar though. This is where we could run into problems in relation to pain management/pain relief. “Your pain measures as a level 5, this is what you get to reduce your pain”. That may not work. Might be too much or not enough, depending on the person. Not to mention other reactions to medications. Given the typical dose of morphine, another woman I know and I have quite different reactions. She hallucinates and sees spiders eating her legs, I’m up making coffee. Consequently she was only given the “typical” dose once.

Then there is the time factor. I can cope with my pain for a few days: after a few days, let me tell you it starts to get VERY draining. Tiring. Our resilience drops. Once the resilience drops, the pain may feel worse, even if it actually isn’t any more severe than it was the day before. With my current little (OK, not so little) issue, yes, I have resorted to the big guns on a couple of days this week, and probably will do so again before the new medication kicks in – assuming it will kick in. Eventually.

In my particular case, the pain rises overnight, is worst when I first wake and I can usually get rid of MOST of it by 10:30 am. The rest of my day I can do the things I need to do: walk, swim, weight training.

My brother-in-law, different conditions and much sicker than I am, has been on ever increasing serious pain medication every day for several years now. I am relatively lucky in comparison. Even so, none of us like pain, whether it be a pitchfork through the foot, post-op pain, or chronic pain. Although I juggle a few conditions, only one of those causes me pain. Other people are not so lucky, they have multiple painful conditions.

To further complicate the pain issue, what of those of us who do not feel pain when perhaps we should? I’ve mentioned that before too, as I am one of the patients considered to have some wonky pain sensors. Not all, by any means, just some. But this poses other risks, in that I do not always realise something is “bad” when it actually is, such as the infected tooth discussed in that linked article. Neuroplasticity is a major field I am not going to delve into in this article, however, wonky wiring is not an undiscussed topic. My right (unoperated) knee actually fits an example given in the below article: that knee is wrecked on imaging, but I am not in pain from that damage. The below link is to a story by Paul Biegler, author of “Why does it Still Hurt”.

Why do some people suffer constant physical agony from their injuries and conditions, while others with identical problems remain fine? The explanation may lie in the brain – and its wonky wiring.

“The brain is responsible for what we feel, but it doesn’t get it right all the time.”

https://www.smh.com.au/national/hurting-so-good-the-pain-in-the-strain-may-be-mainly-in-the-brain-20221205-p5c3r7.html

My suggestion to fellow patients is to provide some comparative or functional context if you can when describing your pain to a clinician. I use my hysterectomy: that’s not a option for everyone! Childbirth can be a useful comparative, depending on your audience (female doctor or nurse who is a mother, for example). Functional descriptions can be useful, as in “I cannot lift my arms above my chest, the pain is too severe” or “I cannot drive the car” but I find them less so. Recently I couldn’t open the coffee jar. I needed two hands to lift the milk out of the fridge. I could not put on a t-shirt as the shoulder movement required to achieve that was too painful. I should perhaps add, (usually) if I sit and do absolutely nothing, nothing hurts. That’s the nature of my disease. As soon as I move something – THAT is when it hurts. So it is a different pain pattern to that which will be experienced by many readers with different conditions.

The pain measurement scale is what it is at this point. Until science finds a different/better way, we all, patients and clinicians, have to muddle through with what we have, as imprecise as it is.

Symptom Diary

Symptom Diaries

Oh, you are lucky today! Both a video AND text – choose whichever you like!

I first heard about the concept of symptom diaries about six years ago. I had moved and was looking for a new GP. A friend had recommended the clinic I am still with: I was calling to make my first appointment. As is often the case, I was placed on hold and while listening to the recorded information I heard: “Bring your symptom diary.”

To me, at that point in my journey, the concept of a symptom diary smacked of hypochondria and that horrified me. However, we live and learn and I now recognise the value of a symptom diary and I keep one.

A symptom diary allows you to provide your doctors with accurate information about your condition/(s).

  • What happened
  • When things happened
  • Quantification of improvements or otherwise
  • Pattern analysis
  • Trend analysis

Let’s look at examples of each of the above.

What Happened: Many chronic illness patients, myself included, experience a degree of cognitive impairment (otherwise referred to as “brain fog”). This means we forget things. If we forget things we don’t tell our doctors and they are then operating on limited information. We don’t see our doctors regularly – it can be months between visits!

When Things Happened: We may remember what happened but forget when – and when can be important especially if the patient is changing medications or has (as many of us do) multiple conditions. One specialist may change a treatment that may impact a different condition. I remember back in 2014 my rheumatologist wouldn’t start me on arthritis treatment until we had progressed some way along the path of controlling my thyroid. There are often relationships between conditions.

Quantification: I can say to my doctor “I’m losing strength”. While somewhat useful, it is much more useful if I can quantify the loss. If I can say to my doctor I was doing 140 kgs on the leg press but two weeks ago I had to drop 10 kgs and again this week another 10 kgs. Or walking: if I have recorded a drop from being able to easily walk 2 kms in one session but am now struggling to walk 1 km in a session, that quantifies the change over time.

Pattern Analysis: We may find something happens on a regular basis IF we are recording it. Let’s say we find we are really stiff and sore every Thursday morning. If we know it is every Thursday, then we can look at what are we doing on Wednesdays or Tuesdays that may be triggering a flare on Thursdays. Without recording it, we may not even realise it is every Thursday.

Trend Analysis: Recording allows us to see if we are progressing, stable or our condition is worsening. It may give us early warning. On the basis a stitch in time saves nine, catching something early can be a good thing.

Even if your doctor never looks at your symptom diary, it provides you with the ability to provide good information to your doctor. I have hard copy diaries, yes, I write in them in old fashioned cursive! Yes, I swear. I also use the Notes app on my phone for some things. Find what works for you.

As I have said before, we are the foot soldiers in our health war. Our doctors are the commanders back in HQ, they don’t see what happens to us each and every day, they are depending on us to submit a comprehensive field report!

Self Portrait

Unexpected Hospitalisation

As some will know, I was recently in hospital. I thought the situation a good practical example of the unpredictability of some conditions, including mine.

Here is the mentioned link to What Is Psoriatic Arthritis?

This article on Invisible Illness is one readers may also be interested in.

And yes, for those curious, I DID indeed get clearance from my rheumatologist before exercising!

Covid-19: Worst Case Scenario Ignored

My random Tuesday thoughts: we are ignoring the Worst Case Scenarios. We are not planning ahead.

My previous writing on Covid-19: Covid Is Not Over

A related article re how society deals with the existing chronic illness population, which readers may find useful: Will Society Adapt? When? How?

1973

The Impact

    This is Part III (and final) of a series. Parts I & II should be read before reading this article.

    In 1971 there was not a lot of no psychological support for myself and my siblings. I think we were just supposed to get on with life. My siblings were placed in a foster home together in a different town. As I was employed, I was placed in a foster home in Timaru. I don’t know if my siblings were offered any counselling, I certainly wasn’t. We were left in the house alone for a week until my mother’s body was found, after all.

    Momentary digression here. My foster home didn’t work out so well. One weekend I asked my foster father to cash a cheque for me (no ATMs in those days). He said if I came and sat on the bed with him, he’s give me the money and I didn’t need to give him the cheque. Ah, no way, mate, that ain’t happening. Not today, not ever. I saw the lawyer on Monday to seek permission to move. He assumed I was making it up (after all the guy was a “respected” member of the community while I was the daughter of two suicides) and sent me to see a psychiatrist. I was furious. Not sure of the psychiatrist’s “diagnosis”, but I did move out. Into a share house with three other young women.

    I don’t remember Mum’s funeral at all. I know I went, but I have no memory of it. I have little memory of my father’s funeral either, although I know what I wore and that The Last Post was played.

    I struggled with feeling guilty. If I hadn’t left home when I did, would Dad have survived? Was my leaving the straw that broke the camel’s back? I felt guilt over my siblings. Mum and Dad were genetically my parents, not a lot I could do about that. But they had sought out adoptees and then just deserted them too?

    Yes, I pushed such thoughts aside, to survive, but they were there. The fear and/or sadness of somehow being responsible. After all, I hadn’t been a golden child. I’d had febrile convulsions as a baby, tonsillectomy at four, meningitis at boarding school, appendectomy, measles, mumps, chickenpox, I’d run away from boarding school…..

    To lose one parent could be deemed careless: to lose both, the child must have been really unloveable, even evil.

    “To lose one parent may be regarded as a misfortune; to lose both looks like carelessness.” Oscar Wilde

    There was the sense of abandonment. I wasn’t good enough, my parents hadn’t loved me enough to stay. Obviously this contradicted my feeling of guilt about leaving home but I was 15. None of it made sense. I also went through, and still go through, phases of blaming my mother for my father’s death. Yet I know she wasn’t well, so I shouldn’t blame her.

    Maybe I’d just been too much trouble…It is only now, now I know about PTSD and the risk of cortisone psychosis, that I can truly comprehend a) it isn’t genetic (a GP assured me of that once I’d “survived” past 50) and b) there were situational factors in their lives over which I had no control. But that is logic. Emotions linger even when facts are known.

    If my own parents couldn’t love me enough to stay, how would anyone else love me? As an adult I know that is not rational given the circumstances, but at 15 it was very much a real emotion. My life would be loveless.

    The risk of suicidal tendencies being genetic worried me for many years. This was consolidated in my mind when a life insurance company loaded my premium because my parents had committed suicide. I’ve never touched gin as an alcohol. For many years I had a fear of taking valium – until a GP convinced me to use it as a muscle relaxant when I had awful back spasms. Have to say it worked brilliantly for that.

    In February 1974 I came to Australia on holiday simply to “see where Mum came from”. I had contact details of Mum’s oldest friend in Sydney. I couldn’t get a direct flight to Sydney so I arrived in Melbourne. I’m still here. I did go to Sydney and met Mum’s friend, but I don’t remember much of that trip at all.

    Why did I stay in Australia? I think it was because in Australia I had no past haunting me. In Timaru, everyone knew who I was – that teenager whose parents knocked themselves. I felt I was expected to either do the same or end up pregnant. Here in Melbourne I was just another person. I was judged on my own merits, if you like. There was a freedom to that. So I decided to stay here. I didn’t have to tell anyone anything and generally, people didn’t ask. I was just a young adult migrant.

    Hopefully my children have broken the generational cycle. As I look back I am proud of the fact I’m still here. I got an education. I did try to study medicine as an adult. The dream was still there. I went back to school here in Australia, did my HSC part-time while working full-time and raising two young children. I missed medical school entry by two marks. Started a science degree in the hope of doing well enough to transfer. Both kids got chicken pox in the first semester (not vaccines back then). Husband complained about me studying, wanted me to get a job. I gave up. In the end I did a business degree part-time while working full-time: it was easy, I’d been working in that field for years.

    I’m unhappy about the four divorces and the disruption to my children’s lives but I suspect that family history has a lot to do with how my life “panned out”. As mentioned in the first of this series, psychologists will tell you two people from dysfunctional backgrounds are not an ideal match for a stable, long-term relationship. My partners were also from disrupted childhoods of one sort of another. Different situations in each case, but no white picket fence childhoods either. Of course, I did not know about these studies until it was too late.

    When I was young, I just got on with life as best I could. I pushed the deaths to the back of my mind. There was nothing I could do about it, I couldn’t bring them back, it had been their decisions. All I could do was build a life for myself. It is only now, in these later, health-challenged years, I look back and wonder what trauma did I “inherit”? What trauma have I passed on? Would I be a chronic illness patient today if I had grown up in a stable home? I will never know. Hopefully, in time, science will determine if there is a link for people like me. My GP once said to me she felt I’d been misdiagnosed as a teenager. Misdiagnosed? I’d not been to a doctor as a teenager, there were too many funerals happening.

    I did the best I could. I tried. To all those out there with traumatic histories, I salute you. It isn’t easy.

    The picture is me in 1973.

    Other related articles readers may be interested in:

    What is Psoriatic Arthritis?

    We Don’t All Look Sick – Invisible Illness

    Feeding Felicity

    My Childhood

    This is Part II – continuing on from The Background. This details parts of the journey, it is not comprehensive. Partly because it was traumatic, but also because my memory was impacted by the trauma of the suicides. I remember catching eels with my father. Spraying gorse bushes. Helping in the woolshed. Dipping sheep. Giving mouth to nose resuscitation to a calf we pulled out using a tractor. Birthing lambs because my hands were smaller than Dad’s. Fleeting snippets of my life.

    The lamb in the above photo is Felicity. The dog is Cloud.

    My understanding is my parents had difficulty conceiving. My mother underwent a procedure to “clear” her fallopian tubes. I am not sure what that entailed in 1954. For whatever reason, after successfully producing me, they decided or were unable to conceive again and adopted my brother and sister.

    My mother was really not very suited to country life. I think she thought the idea of life in the country frightfully romantic. Thinking the ferns and the waterfalls are beautiful is one thing: the practicalities of farm life are a little different. For example, although Mum had been a licenced driver in Sydney, she refused to get an NZ licence and drive on the gravel country roads.

    One memory I have is Mum and Dad going to collect my sister. I was left with friends for several nights. I remember crying my heart out at being left. I didn’t understand why I wasn’t enough, they needed to go and find another child. I was four at the time. Of course as soon as my sister arrived, I loved her dearly, but the suddenly being deserted for reasons I didn’t understand was confusing to a four year-old. I loved her dearly and still do, despite the fact when she was about five she hit me on the head with an axe.

    Another memory I have is the little puppy I saved. A rat or a possum or something had bitten one of his front paws almost in two down the middle. Dad said he would never be a working dog and needed to be put down. I pleaded to be allowed to try and repair the paw. I didn’t have sutures, I could only disinfect and bandage the paw. The puppy survived and we found a home for him on a dairy farm, where the dogs did not have to be as agile as on our farm. That was when I decided to be a doctor.

    Mum and Dad spent a fair amount of time arguing. Mum would throw china and shatter things and slam doors. Every Christmas Day was a battlefield. Mum would want to be driven 22 miles to church and Dad would refuse. It was his one day off a year. One Christmas, Mum set off to walk the 22 miles. I think she got as far as the neighboring farm. Heels are not great footwear on gravel roads. I have very little memory of Mum ever being outside helping Dad – for example steering the tractor while he fed the hay to the cattle. I have one memory of her on a tractor. I started steering the tractor at about eight. I realise now Mum was never happy about having the Māori shearers in her home for meals.

    When I stuck a pitchfork through my foot, of course it was my father who took me to receive medical care.

    I studied by Correspondence School. Once my sister was approaching school age my mother decided she could not supervise two students. There was also, by now, my adopted brother. He is seven years younger than I. So at 10.5 years old I was sent to boarding school in Christchurch. Consequently, I missed a lot of what went on at home in the five years from then until the deaths – I wasn’t there.

    When I was hospitalised with meningitis, it was my father who came to collect me when I was discharged. Here is a note my father wrote to my mother another time he visited me at boarding school. The sentence “So you see what a little encouragement does” strikes me in the heart.

    Dad Note

    On April 10, 1968 the Wahine sank. The students hadn’t been told this and I was laughing about something as I walked down the school corridor. The headmistress sent me back to the boarding house in disgrace for being disrespectful. I was not impressed and ran away from school. How could I be disrespectful if I didn’t know the ferry had sunk? It was, of course, my father who came to find me. I’d managed to get myself to two elderly spinsters in the Cashmere Hills. I have no idea how they were related to us, but I believe they were.

    At one point the Anglican priest came to see me. My mother had been hospitalised for exploratory surgery as the doctors had suspected cancer. I was not to be concerned, as Mum did not have cancer. When I was home on the next holidays, Mum gave me this great long medical name for something and told me if I ever got sick as an adult to tell the doctors my mother had whatever this big long name was. I remember saying, “Mum, I’ll never remember that!” She thought for a moment then said, “OK. Remember the wolf”. The only thing I can think of is lupus. Lupus is Latin for wolf. I don’t have lupus, but did my mother? We will never know.

    My mother spent many years urging (insisting?) my father sell the farm and move closer to civilisation. He did it, but I think it broke his heart. The farm was the first thing that was really his and he’d built a great farm and a good reputation. But he sold it. The family moved to Greymouth while Dad searched high and low for a new farm to buy. Eventually he bought a farm in Washdyke, near Timaru.

    I had won a scholarship to St Margaret’s in Christchurch, but I wanted to live at home. The headmistress of my primary school was horrified. She told me to tell my parents they were wrong to decline the scholarship. I stuck to my guns. As we had not yet taken possession of the Washdyke farm when I started high school, I boarded for the first term. Thereafter I was a day pupil.

    Here we were, a few miles from Timaru on sealed roads. Two-way roads, even. Mum still did not get her licence.

    When I collapsed on the floor in agony my mother told me there was nothing wrong with me, to stop being a drama queen and making a fuss. Thankfully my father took me to hospital – I had my appendix out a couple of hours later. I remember being absolutely horrified with the emergency department doctor asked if there was anyway I could be pregnant Standard question, I realise as an adult, I didn’t know that then!

    My mother attempted suicide and was hospitalised. I don’t remember the year, I only remember standing in the hospital corridor with Dad. I do not know, but I suspect this may not have been the first time. I had been at boarding school for three years: I was possibly not told of previous attempts. People didn’t tell kids things in those days and my siblings were too young to remember.

    Even though Dad had sold the farm, there were still horrific arguments. I remember my mother drinking an awful lot of gin. Consequently, I’ve never touched the stuff. As well as the cortisone, she seemed to have an endless supply of valium and sleep medication.

    Towards the end of 1970 I just couldn’t take it any more. I moved in with the local minister and his family for a break. It was school holidays and I had a holiday job at a Timaru retailer. One day in late December I received a call from my mother asking had I seen my father. He was missing.

    The neighbouring farmer found his body in the car in a back paddock. He had connected the exhaust. He’d also written a suicide note, but I don’t have that. I keep meaning to ask Timaru Police if they can dig it out of the old files. For years I carried guilt about leaving home. Would he still be alive if I had stayed?

    My siblings were not allowed to attend the funeral and my mother attempted suicide the night before the funeral so was in hospital. I was the only immediate family member there. Dad had traced his mother’s family when he returned from WWII and some cousins and an uncle did come to the funeral.

    The farm was sold and the some of the proceeds used to buy a house in Timaru. I left school at this point. I started a full-time junior position in a chartered accountants office. Mum, who had not worked since 1953, looked for work. There was another suicide attempt and she was hospitalised again. I tried to have her committed, but I was only 15 – my pleading carried no weight. However, when she ran away from hospital it was me they called to try to find her.

    I remember her being completely hysterical one night and I slapped her as that is what I had read could shock a hysterical person out of the episode. It sort of did, but I was so traumatised by the whole thing.

    One afternoon in April 1971 I came home from work to find my siblings playing in the cul-de-sac. It was after 5 pm, why where they not inside? They couldn’t get inside because Mum wasn’t home. I knew immediately what was happening, but again, no-one would listen. I rang the police but they couldn’t or wouldn’t do anything for 48 hours, despite her medical history. My boyfriend of the time and his friends tried searching but to no avail.

    A week later a local resident was waiting for the bus at a nearby bus stop and smelt a suspicious smell. Called the police. It was the body of my decomposing mother.

    Three generations of trauma.

    As I mentioned in the preceding article, I suspect my father had a degree of PTSD from WWII. I think he and my mother were an unfortunate pairing. Had she been a strong and supportive partner, he may have survived. If, as we suspect, my mother did have the disease I have, I can understand that facing the prospect of raising three children alone could have been more than she could face, especially given her previous suicide attempts. We will never know, we can only hypothesise.

    Read on in Part III – The Impact. How did I deal, or not deal, with all of this?

    I have deliberately not spoken much of my siblings. It is not my place to tell their stories.

    Wedding Colour

    The Background

    On June 12, 2021 I wrote a thread on Twitter outlining what had happened in my earlier years. It was my birthday and the year that marked the 50th anniversary of my parents’ suicides. More recently I stated (perhaps unwisely) I’d write a more comprehensive account. This is Part I – The Background.

    In writing this, I’m not looking for condolences or sympathy and some readers may even consider some of my phrasing rather harsh or too clinical. What is done, is done. Nothing can reverse the passage of time or the events of the past for me personally. I’m interested in the scientific aspects of my journey in the context of my chronic illness. Can my experience add to a pool of knowledge that might help others?

    Turning 66 seemed significant in some way that I couldn’t quite quantify at the time. I then realised it had something to do with family history. While many readers know my parents both suicided four months apart when I was 15 (so the 50th anniversary fell in early 2021) I’d never shared much of the rest of the story. Notice my mother’s name is Sheila. The spelling below is wrong.

    Gravestone

    Let’s take a look at Dad’s side of the family. Dad was an illegitimate child. In 1920 this was not socially acceptable at all. His mother, Irene Mary Dunphy, refused to put him up for adoption, placing him in an orphanage with the intention of bringing him home when she could. in 1920 this must have been quite a stand for Irene to make, but she stood her ground.

    Bear in mind we are talking the 1920s. WWI had barely finished, The Great Depression was looming. I have very little factual information from that time, but I do have a letter from Irene to the orphanage, dated February 1923.

    The letter ends with “love and kisses to my wee pet”. By this time Irene had married and was Mrs Fahey. The letter seems to imply Irene may have been paying for my father to be cared for, but I have no confirmation of that. The cheque she mentions may have been a contribution, rather than payment of a fee.

    The next communication I have is dated 1930. My father was born in Dunedin, the 1923 letter was sent from a Christchurch address, yet the 1930 letter is stamped as being received in Wellington. It was sent from Nelson. For those not familiar with New Zealand geography, Dunedin is in the south of the South Island, Christchurch is mid-South Island, Nelson is in the north of the South Island and Wellington is in the North Island. Did my father move around? Had he been home at some stage and returned to an orphanage due to the depression? I have no idea.

    In the late 1990s, one of Dad’s half-brothers tracked down my brother, so clearly Dad had not been a secret. The children Irene had later were well aware of his existence.

    Irene died in a later childbirth so Dad stayed in the orphanage until he was 15, then went to work as a farm hand. Then off to WWII. He drove a tank.

    John Dunphy

    Mum’s history is unclear. Her mother, Constance Eva Beck, was one of 13 children. Constance moved from New Zealand to Australia and married an Englishman, Charles Henry Lacey. The marriage took place in 1919.

    Constance was 38 when Mum was born. Mum was their second child.

    Birth Certificate

    The first child, a son, was stillborn (noted on the above birth certificate). There were no more children born after my mother.

    As a child, I was always told Charles died when my mother was 12. Despite much seeking, I have never found a death certificate for Charles in Australia or England. I was searching for a death certificate because at the time I had discovered being the granddaughter of an Englishman meant I was entitled to a four year visa to live and work in England. I thought that might be quite an adventure, but I needed his death certificate to apply for the visa. In 1935 an English passport got a person into so many countries: if he did do a runner, he could have died anywhere. I had no intention of doing a global search! I did try Canada as an option, but it was at that point I decided I could be searching for years and never find anything.

    Update: Since publishing yesterday, a death record has been found in NSW for Charles Henry Lacey.

    Death Notice
    Search NSW

    This paragraph is now effectively obsolete, given the above update, however I am retaining it as it is part of the history I lived with: the unknown. I have no memory of my mother and grandmother ever referring to Charles in affectionate terms, he just “died”. Of course, back in circa 1935 if men deserted the family, it was more socially acceptable to say they died than to admit they had run away. Whether Charles died or ran is still an unsolved mystery. It does not seem as if my mother and grandmother were poor, but that may have been all smoke and mirrors. One day I might get around to trying to solve the mystery again, but at this time there is quite enough going on: not only my own health, but the health of other family members.

    Despite Constance being one of 13 children, my siblings and I NEVER knew any of those relatives. That strikes me as odd. What happened? Why did she move from New Zealand to Australia? Circa 1918/19 that would have been quite an independent thing for a single woman to do. Constance and Charles married in 1919 but when and where did they meet? During the war? So much is unknown about their history.

    Constance later returned to New Zealand to live. Mum stayed in Sydney, but did go back to New Zealand to visit Constance. That is how she met Dad.

    Sheila Constance Lacey

    As can be seen, neither of my parents had a “white picket fence” childhood themselves. I have been told by psychologists that studies show two people from dysfunctional backgrounds are not an ideal match for a stable and successful relationship.

    There are two health factors I believe are critically important. The first is my father’s service in WWII. Dad was likely suffering PTSD. There was not much support offered in those days, as we know.

    Mum was on cortisone for most of her adult life. This was supposedly for eczema and asthma, but my doctors and I strongly suspect she had psoriasis, not eczema. We can’t now prove this. Psychosis is a known adverse event of cortisone use.

    Steroid-induced psychosis is a well-documented phenomenon. It usually occurs with oral systemic steroid treatment and is more common at higher doses

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6793974/

    Against these backgrounds my parents married. Not only did they marry, they lived in total isolation. Our home and farm sheds are the lower group of buildings in the image below.

    Kopara Falls

    This was a returned soldiers’ settlement farm.

    There were conditions for eligibility for farms, including previous farming experience and how much personal money the applicant had available to put into the farm. On qualifying to apply for a farm, the applicant could choose which farm settlement(s) he would prefer and, if there were more than the required number of applicants (which was usual) for that settlement, a ballot was held which participants could attend and know the results immediately.

    https://www.theprow.org.nz/yourstory/farm-settlements-for-returned-soldiers/#.Y79YcnZBzrc

    When I say isolation I do mean isolation: no phone, no electricity, no car. This photo is my father in his allowed form of transport in the early days: horse and buggy.

    Horse and Cart

    Once I was born, my parents were allowed a car, phone arrived about then too. I stole this phone image from the internet: it is an exact replica of the phone we had. We were on a party line and our ring was a long and two shorts. “D” in morse code.

    Phone

    Electricity took many years longer, but we did get a generator before the power lines arrived!

    My parents were married on June 6, 1953. The main photo, above, coloured by a very kind Twitter contact.

    We’ve reached the point in the story where my parents are married: I’m two years and six days away from making an appearance.

    Stay tuned for Part II – My Childhood.

    Watch

    I LOVE a Mystery!

    I do! I love a mystery. Be forewarned: this article is outside my qualifications or skill set – I just want to share the mystery. My interest in this mystery is, IF (and this is a big “if” at this point) wearables can detect increases in inflammation from monitoring various physiological metrics, how useful could that be to so many of us with inflammatory conditions?

    As regular readers know, this has not been the best health year for me – not actually major bad things, but not exactly climbing Mount Everest either. To catch up a little for context, check out The Tangled Web of Chronic Illness.

    Earlier this year, I bought a Garmin Forerunner 55 sports watch. I got it on special, just for the record. Now, I was rather upset to discover they’d stolen MY idea of an internal battery, just renamed it Body Battery. (No, I don’t really think they stole my idea).

    It was interesting indeed. Here was I not feeling too crash hot and my watch was telling me my body was very physically stressed even when I lying in bed asleep. Here is December 14 as an example of the type of day I was seeing.

    Body Battery

    The orange bars are physical stress (draining), the blue are rest (recharging). Out of a max of 100, my battery reached a high of 33 that day and dropped to a low of 13.

    What, I wondered, was this trying to tell me? My doctors weren’t very interested. It’s not a medical device, after all. Well, they may not be interested, but I am.

    The watch is very accurate with other measurements: kilometres walked, GPS, step count. But was it perhaps faulty in this respect?

    The first question I had was how is Garmin calculating this? Click the pic to read the full article

    Calculation

    I read several of the related publications, just chose the above to share here.

    I was convinced my watch was telling me something. I even logged a support ticket with Garmin (still in progress as I write) but I have now decided the watch is onto something. That something MAY be inflammation.

    Let’s move forward to the end of December, when I was having quite a bit of pain. After two rheumatologist visits and two GP visits between December 22 and January 3 and a steroid shot in one wrist AND (this is the kicker I think) starting on anti-inflammatory medication on Wednesday January 3, all of a sudden my body battery looks much more like I would expect it to look. Here is yesterday’s report! Compare the pair!

    Yesterday I did stuff aside from walking. I did a big grocery shop, put all the groceries away, I worked in the afternoon and before lunch. I can match those orange periods on the graph with what I was doing during the day. I could not do that in December. Not only that, I reached a high of 85! 85! The low of 8 was at midnight.

    Stunned I was! The only explanation I can come up with at this point is the anti-inflammatories. Started on Wednesday, took a couple of days to kick in. Plus, of course, I have started my new PsA medication and it will be hopefully starting to work behind the scenes as well.

    This morning is looking very similar. By the time I woke up my battery was charged to 93!

    Body Battery This Morning

    Now, as I type this, I have used up some energy. I was out walking at 7:30 am this morning. I haven’t felt like doing THAT at 7:30 am for months. 2.5 kilometres, for anyone keeping tabs. As we know, over Christmas it was taking me until about 10 am to desolidify enough to walk.

    Now, two days does not solve a mystery. I might be 100% incorrect in my deliberations. However, I’m sure you’ll agree it is very interesting. Is it not? I will be monitoring progress to see what happens from here on in.

    Yes, I have updated my Garmin support ticket with this new information. I’m finding this quite intriguing!

    One more graph. Garmin also provide a graph of your average physical stress over the days. Look what has happened.

    Stress Graph
    Wrist

    Resilience and Pain

    What comes first? The chicken or the egg?

    PLEASE NOTE: There is MUCH more to the question of pain than I cover is this very short video. Here I am looking at ONE small incident to highlight how it can be contentious, even with relatively small (wrist) body parts (which may be being disproportionately painful).

    In the above video I compared my wrist pain to my post-op total knee replacement pain. Please hear that in context: with the knee I was in hospital, a myriad of medical staff ensuring the pain was WELL MANAGED. The net result is yes, the wrist was worse.

    I’m using video a bit at the moment to protect my wrist as it heals. I’m new at this video game, so please bear with me!

    I wrote in a bit more detail about my current health challenges at Movement As Medicine for anyone catching up: the wrist in question was already showing signs of being something different to the rest at that time.

    New Year’s Eve Message 2022