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.

    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.

    Movement As Medicine

    Let’s talk about specifics while I’m actually madly using movement as medicine in my own life. I use it all the time, obviously, or Limberation wouldn’t exist! Right NOW it is critical to just getting through my day.

    I am in the process of changing medications. While my rheumatologist said “The medication’s stopped working”, now that I’m a few days down the track I tend to think it may not have quite stopped completely. Maybe a drop of 50%. Because I’m in a LOT more pain now than I was on Thursday when I saw him. Today is Monday, for reference. Thursday morning was the last dose of the old medication.

    Why medications stop working for me is an as yet unsolved mystery, so for the point of today’s discussion, just accept it happens for me. We’ll investigate why another time.

    I was hoping the new medication would at least provide some improvement in the short term. Not so far (but it has only been five days). In an attempt to get a handle on when I might expect an improvement, I looked up the information.

    Information re medication

    Improvement after SIX MONTHS? I should say the documentation accompanying the medication and detailing two of the clinical trials provided more nuanced detail and I might see improvement by four weeks, so I’m hopeful! Even so, given that several areas of my body start getting painful at about 3 am, are REALLY painful by 7 am and that lasts until about 10 or 10:30 am depending on when I start moving (i.e., get out of bed), I have to get through the next weeks, whether they be four or 24. As my rheumatologist very sweetly squeezed me in on the last day of consulting prior to the Christmas break, we really didn’t have time for lengthy discussions, it was a fix-the-immediate-issue type consult. I will see him again in January and have the opportunity then to delve into the detail! I’m just grateful I was seen at such short notice! As he has me on Prednisolone (bridging) for six weeks, I’m figuring four to six weeks is the expectation for SOME degree of improvement.

    The current list of sore bits?

    • Both shoulders (not too bad)
    • Both ankles
    • Soles of both feet
    • Posterior leg muscles, roughly around the back of the knee (could be gastrocnemius origin, not sure)
    • Right wrist (not bad)
    • Left wrist (EXCRUCIATING) – UPDATE: this is actually De Quervain tendonitis, diagnosed Dec 28.
    • Both hands, some fingers worse than others
    • The other day my neck was also in the mix, but it seems to have settled down – after some remedial exercises.

    I think I’ve listed everything.

    When I say the left wrist is excruciating, I mean when I load it (that is turn it, or try to lift a coffee mug) it feels like I’m being stabbed with a scalpel. When I once used that description of pain to my GP I saw the “you don’t know what that feels like” look on her face. I said, “I once stuck a pitchfork through my foot. Completely through. Into the ground on the other side.”

    “Ah”, she replied, “You know what a puncture wound feels like.” Yes, sadly (and stupidly), I do.

    In this particular case, it isn’t just the wrist itself, it is the tendons from the thumb, right where they pass the wrist joint. OUCH!

    Anyway, back to movement! So my day goes like this. Wake up, in pain in all the various spots listed above. Clearly getting dressed and having breakfast are challenging. Getting that bra on….. you guys don’t know how lucky you are, trust me. I take my Prednisolone. Yes, ideally I should take it at night to counteract the development of inflammation overnight, however, if I do, I get NO sleep. So that’s not an option for me. I like my sleep! I need my sleep!

    I potter about having breakfast (Pred has to be taken with food), gently moving everything until I can actually get dressed. By 10 or 10:30 I can walk. I mean walk outside, movement. This morning I monitored the improvements for the purposes of this article. By 300 metres the pain behind my knees had gone. By 500 metres my feet were feeling heaps better. By 1 km my ankles were improved. I have stuffed ankles anyway, the surgeon in charge of feet in my world wants to replace my ankles, they are mechanically so bad. So given they are likely a hot target for PsA inflammation, I’m not expecting them to resolve completely on a walk, but they are now much happier that when I left the house.

    Walk

    Having got the lower bits & pieces thawed out, I then tackle my hands. Warm, salty water in a bucket. Various finger movements, here are some.

    I will also make fists. I hyerextend the fingers too, but do that out of the water.

    By about 11:30 am I am actually a functional human being again. Pretty much. Am I completely pain free? No. Can I walk, use my hands? Yes.

    Now I can use my hands, I can do remedial exercises for my shoulders. As I’ve detailed those at that link, I won’t repeat myself today.

    I haven’t mentioned any pain medications have I? Well, no, because as I may or may not have mentioned before, the run of the mill pain meds we are allowed at home don’t really work for me most of the time. Endone we don’t even bother trying any more. I do take Panadol Osteo, it does help a little bit. This morning I didn’t bother with Tramadol as I wanted to compare to yesterday (when I did take it) and as I suspected, no difference. So I can now put Tramadol on the list of “May Work On Lucky Days” – or with some types of pain, but not all. Not working with what I’m dealing with at the moment, obviously. I do know about keeping severe pain under control, that it is harder to get back under control if you let it get too high on the scale. I’ve had a hysterectomy and a total knee replacement among other surgeries, I learnt stuff! I also know when a medication is not working.

    For the record, I was born with these resistances (pain meds and sleeping meds, both). Most of my life it wasn’t a problem. I didn’t have pain and I slept like a log. Until I got sick. NOW I need the damn things to work, but the chances are slim! I also have wonky/broken pain sensors. Some, not all. I do wonder if that has anything to do with why pain relief doesn’t work with any reliability either. Pain to do with muscles, tendons, entheses I feel. Other stuff, like stomach ulcers, an infected tooth or abdominal adhesions – those pain sensors failed the quality checks during assembly.

    My GP asked me had I always been that way. I said I have no idea – to ME I was normal. I didn’t know other people felt pain when I didn’t, plus I was rarely sick (other than the usual measles, mumps, chickenpox etc in pre-vaccine days). I did have meningitis at about 12. I did tell my GP that I remembered saying to people after the birth of my first child , “I’m not sure what all the fuss is about, it isn’t that bad.” The look of shock on her face was quite dramatic! I think that was the point she jumped on board with the pain management crew at the Barbara Walker Centre who first suggested I had faulty wiring.

    Prior to my appendectomy, I went from absolutely no pain to agony in the space of about 30 minutes, BUT that really isn’t a reliable indication, as that can happen with appendicitis. No pain with my gallbladder either, BUT I had a porcelain gallbladder and often there is no pain with a porcelain gallbladder. So again, not conclusive evidence. Indicative, perhaps, as the surgeon did seem a little surprised that I had no pain given the state of the thing.

    Without using Movement As Medicine I’d be in BIG trouble right now.

    Are my legs, feet and ankles sore when I take those first 300 or so steps? Yes, I’m not going to lie to you, they are sore. I don’t start while they are still really painful, I do that thawing out first, pottering about. But no, I don’t leave the front door feeling normal.

    Do I have a good rest of the day? Yes, pretty much. Yesterday, I still reached my four kilometres and 7,500 steps targets. I’m slow, but I’m moving. These items list in reverse order, by the way. The 0.36 was at the end of the day, just to reach the targets. I was up earlier yesterday too, so thawed out earlier.

    Taregts

    My fingers and hands are still swollen and they actually feel swollen. But the soreness has gone for the day. I am NOT lifting weights at the moment. My assessment is (an example) the load on the wrists of holding the dumbbells for the bicep curl is not going to help the wrists. The biceps are fine! I could probably risk lower body and core stuff, but my body is fighting a battle with itself at the moment, so I’ll keep it to remedial level activities.

    I will rinse and repeat the day just described until the new med starts to kick in. I will add activity intensity as I deem appropriate. For example, if I get the shoulders settled, I’ll hit the lap pool. The shoulders aren’t too bad, so I think I may be able to calm them down relatively quickly with focused attention.

    Here’s the caveat. Make sure you talk to your doctor/(s) and/or physiotherapist before using Movement As Medicine. My purpose is to provide my experience as encouragement from a practical perspective. To illustrate the value of moving. Having said that, not all conditions are the same. Different patients have different comorbidities, different degrees of severity: a host of clinical considerations. Always consult YOUR health care providers.

    The below is from an interview with Arizona-based chronic pain specialist David Tom, M.D.

    Movement As Medicine

    I have subscribed to this theory since late 2014 and it has served me well. Eight years and I’m still moving. Movement has helped me get through six medication changes (this new one is my seventh medication).

    My final tip for the day? Get bright shoes! They lift your spirits!

    It Feels Like Selling a Faulty Product

    I’ve had this thought floating around in my head for months, but had great trouble turning it into a readable piece! After recent events (December 22 to be precise) I feel I can better illustrate the concept. What happened? My medication stopped working. I’m faulty. Action had to be taken. Right on Christmas.

    Fair warning: I might be the only chronically ill person who feels like this. But I actually doubt that. Often when we think “it’s just me” we find out it isn’t “just me” at all. But it is something no-one talks about. I will primarily use myself as an example because I don’t want to speak for other people – so please think about situations I describe in relation to other chronic illnesses. The circumstances may be different, but I suggest the feelings are similar. Please share your perspective in the comments!

    Many chronically ill people are single: this is where the “selling a faulty product” comes in. Some will have been single when the disease first made itself known. Others may have become single as a result of their illness. Illness place stresses on relationships and some fail as a result.

    I’m NOT suggesting any of us, especially me, want to get married. Or even live with anyone. Living alone has benefits, trust me. Younger chronically ill people may have a different perspective on that, but I’m not in my twenties anymore! Companionship would be nice. A friend with benefits, perhaps. Just because we are sick, doesn’t mean we suddenly lose the desire for intimacy or love.

    Most chronic conditions come with complications. At one end of the spectrum may be a Type 1 diabetic whose condition is so well controlled you’d never know unless you were told. At the other end of the spectrum we may have a person who is bedridden. Along the spectrum some will have clearly visible indications of unwellness: a walking stick, a wheelchair, a walking frame. Some will be like me (at the moment, anyway): my condition, psoriatic arthritis, is invisible. Unless I tell someone, that person will have no idea. Many chronic illness are like that. But I know I’m a “faulty product”. At least that is how I see myself.

    Don’t get me wrong – I’m pleased with what I achieve in managing my health. I know and completely accept my limitations. A note for newbies to this life: acceptance takes a while. A few years in fact. But you will get there! Even so, I know I’m a bit like a car with worn brake pads or a shirt with a missing button. I, therefore, feel I should be open and honest about my limitations. But when, exactly? And no, there is no discount price involved!

    Let’s take a closer look at the rose. In fact, let’s take a look at two images of the same rose.

    Some days, most days, I like to think I am the rose on the left. But some days I am the rose on the right. Unlike the rose, which does not revert, I can be either conformation at any given time. Most chronic illness people will nod knowingly. Healthy people with no experience of the chronic world will be more inclined to go “WTF?”

    If you “bought” the rose on the left, but woke up next to the rose on the right, what would be YOUR reaction?

    As I have discussed before, chronic illness is relatively new to the human race. Many people struggle with the concept that we are incurable, most of us are not going to “get better” next week, next month, next year or, in fact, ever.

    If we contemplate dating, when do we tell the “customer” that we’re faulty? Even bigger question, how much do we tell them and at what point? Up front and perhaps scare the living daylights out of them? Later and risk them feeling we weren’t sufficiently open and honest initially? Or…..is it easier to just put ourselves on the shelf? Not for sale. Return to manufacturer.

    Dating a healthy person sounds good on paper, but are they going to understand? Are they going to be able to cope with the challenges we face on a day-to-day basis? Dating another “sickie” perhaps has the benefit of understanding (hopefully), but do you effectively now have double trouble? Now you have two people with challenges. If one needs to walk lots and the other needs to rest lots, how is this going to work on a practical level?

    As regular readers know, I recently had some flares that saw me in ED. We put that down to an infected tooth (since extracted). However, I didn’t really get better. Three days before Christmas, I called my rheumatologist. Fortunately, I’m not cooking Christmas Dinner for anyone: my daughter and her husband live in South Australia and are coming over the first week of January. If they had been here and I had been hosting, I would have had to cancel – three days before Christmas.

    We can make plans and then have to cancel at the last minute.

    It isn’t just about plans and activities though. It is about the other things that go with our diseases/illnesses that healthy people may have no knowledge or experience of. Here is a SHORT list of just some of the more common issues chronic illness people may be dealing with, aside from the obvious mobility aids we can all clearly see.

    • Patient administered injections (some find this freaky)
    • Skin rashes, which may lead to the next item
    • Icky creams that end up on bed linen and don’t feel very romantic
    • Rules around eating times driven by medications
    • Ostomies
    • Continence issues
    • Mood swings, weight fluctuations etc due to medications
    • Fatigue/lethargy
    • Malaise
    • Brain fog
    • Pain – chronic, periodic or unpredictable

    Some patients are stable. A rheumatoid arthritis patient told me recently he’s been on the same dose of the same medication for ten years and basically lives a normal life. I’ve just failed my sixth medication in eight years. I am in a lot of pain as I write this, waiting for a new medication to kick in.

    I tell myself that two perfectly healthy people could start dating and some time later something occurs that disrupts their lives completely. The story of Sam Willoughby’s BMX accident is a classic example of such a situation. This is a great love story, do read it!

    The pain is still etched on Sam Willoughby’s face.

    Not just pain.

    Uncertainty. Fear.

    “BMX was my life,” Sam says while looking straight down the camera at the start of Ride, an ABC Documentary released on Sunday.

    “Until it wasn’t.”

    The accident that left Sam, a two-time world champion and Olympic silver medallist, paralysed from the chest down, happened on September 10, 2016.

    Just 22 days earlier, Sam had been racing in the final of the Olympics in Rio de Janeiro.

    https://www.abc.net.au/news/2022-11-21/ride-documentary-sam-willoughby-alise-post-bmx/101559036

    In contrast, I could look at my situation as a positive: after all I know what my situation is. Or do I? Do any of us? Many of these diseases are progressive. Many have comorbidities which in some cases may be worse than our first condition, IF we develop any of those conditions on top of the one we already have.

    I may have worn brake pads now, but the motor could blow up next year.

    I’m a fiercely independent person. I’m not suggesting this is necessarily a positive thing, it just is what it is. Would it be nice to have someone spray this icky foam on my back, where I can’t reach? Sure it would. Then my mind says “Who’d want to do that? Someone with a controlling tendency?” It is a risk. Am I overthinking it? Probably. Maybe. Maybe not.

    Interestingly, my GP has broached the topic of singledom with me, yet my psychologist never has! My psychologist talks about “expanding social circles”, very generic. My GP is much more specific (and trust me, I do mean “specific”), bless her. I would have expected it to be the other way around.

    There are no manuals about how to navigate this particular aspect of being chronically ill. Nobody talks about it. At least not that I’ve seen in the readily available literature. There may be a scientific study somewhere, if you know of one, please share the information! I think the silence is born of what I see as the fact humans have not yet adapted to this fourth state of health – chronic, not curable. We haven’t developed social protocols to deal with the disclosure or information sharing.

    It would be so easy if we could get our primary health care provider to write a letter, like they write a referral to a specialist, outlining the practicalities and the patient just hands it over (or there is an exchange of such letters) at a socially pre-determined appropriate time (first date? second date? before sex? I don’t know!). Then I’d feel I’ve been open and honest, the ball’s in your court now.

    I don’t have a solution for this. I am hoping society can have more open conversations about the situation. So many of us live our lives hiding our conditions where possible, as I discussed in You Look So Healthy:

    I asked two members of the support group if they would permit me to use photos of them looking absolutely stunning to illustrate this article. Both declined because the state of their health is not public knowledge – they are concerned about the impact being on a public website such as this may have on their jobs. One in particular is striving for remission and may be able to put all this behind her. 

    You Look So Healthy!

    Now I am retired, I don’t have to hide for fear of losing my job. So I can pose the difficult questions, write about the stuff no-one talks about.

    Let’s Talk About Teeth

    This is a follow-on from my previous article, where I detailed spending too much time in ED with rather nasty PsA flares. As detailed, the consensus in the end was I had an infected tooth and that was driving my flares.

    The offending tooth has now been removed! The improvement in my overall health is nothing short of remarkable.

    I have had NO major PsA flares since the tooth was extracted. I have not needed Panadol Osteo or Tramadol and have tapered off the Prednisolone. Yay!

    I haven’t had a painful wrist, painful or swollen fingers, painful toes or ankles since the extraction. When I say painful in this context, I do not mean excruciating, I just mean sore, irritating or annoying. These are distinct from from full on flares, such as when I couldn’t cut the cheese as the wrist was too painful. I had been experiencing these niggles off and on since starting my new PsA medication, but had actually put it down to the new medication not being as efficacious as the previous medication. I am revisiting that assumption!

    The tooth was extracted on November 21. I have delayed writing this update as I wanted conclusive proof of a couple of seemingly related improvements, however I think it may take a month or more for that, so we’ll see what happens.

    In a nutshell, it seems I may have had an infected tooth for most of this year, without realising. One aspect of this saga I didn’t mention in my previous article is I have some (not all) broken or wonky pain sensors. This was initially suggested by the Barbara Walker Pain Management Centre when I did a pain management program there. There are situations where it seems every other patient known experiences pain, but I did not. I’ll cite one example here to illustrate. I have had my gall bladder removed, yet during the whole process of trying to find out what the problem was, I had NO pain. Just dizziness and nausea and felt unwell. Finally scans were done and bingo, there was a porcelain gallbladder. The surgeon’s words, on reviewing the imagining, were “That needs to come out. Now”.

    We’ve decided anything muscle or joint related, I feel pain. Things like gallbladders, teeth etc – not until the very last minute, if at all.

    It seems it went like this. Some time before April, the tooth became a minor problem and steadily got worse until by May/June I had developed the ongoing fever. The tooth I had issues with in June may have only had issues because the infection from this tooth had spread, upsetting a nerve. The June tooth seems fine now! Antibiotics at the time settled things down for a while, but it resurfaced. As I mentioned in the last article, this tooth is one that my partial plate clicks onto. There were times the tooth felt uncomfortable this year, but it was off and on and I wouldn’t call it pain as such, just uncomfortable. I thought it was probably just the load of the plate putting stress on the tooth, I never considered infection. Not until the very last days before I ended up in ED. By then I did actually have a toothache! Even so, it wasn’t an excruciating toothache.

    Now, during this year I also lost high frequency hearing (yes, confirmed by the audiologist), lost my sense of smell and my nose was swelling internally every night, waking me up as my breathing was disrupted.

    For two days after the tooth was extracted, my sinuses continuously drained down the back of my throat. Two days after having my tooth out, I walked outside after it had been raining. I could smell wet earth! Hmmmm, I thought to myself, if my sense of smell will recover, what about my hearing? After all, I had experienced a VERY mild earache during the worst of what I now refer to as “the ED weekend”. The best home test of that is taking my temperature as the high frequency alert beeps are in the frequency I can’t hear. I have been able to hear them a few times since the tooth extraction, but not every time. While I could smell the wet earth, sticking my nose in a rose is no different than it was before – yet anyway. If I walk past certain plants on my walks, I can smell a scent in the air though. I can smell cinnamon again. So while there are changes, I don’t yet have conclusive proof either my hearing or my sense of smell will return to normal. The changes to date (less that two weeks) are interesting though.

    The nose swelling is still an issue, but improving. My gut is also settling, although attributing that to the tooth is complicated by the fact we also increased my Thyroxine dose at about the same time as having the tooth extracted.

    Upsettingly, due to my drop in activity over this time, Garmin has kindly reassessed my Fitness Age – and not in a positive direction! I am not above admitting that at my age and with my medical conditions, I was quite proud of the fact my Fitness Age was younger than my chronological age. My objective now is to pace back up to where I was!

    The bottom line here is teeth are SUCH a vital component of our health. Yes, those of us with chronic conditions are likely more susceptible to complications due to our underlying conditions and/or our medications. Even so, healthy people are also at risk. My personal situation is complicated by the pain sensor thing: clearly if I’d had a toothache earlier and reported that, I might have avoided much of what ensued!

    It has certainly been an interesting experience!