Movement As Medicine

Let’s Revisit Pacing

In late 2017 I wrote Pacing for Beginners. That article still holds true, but I want to revisit the concepts. In the years since, I have talked to many people. It is obvious that people do have Movement As Medicine or exercise recommended to them to help manage their conditions, especially in relation to pain management. A common thread I have detected is those same people aren’t given any guidance in how to use movement or exercise as medicine. I’m going to stick with movement for the rest of this article as not only can the word “exercise” seem daunting to some, it also implies a “heavier” workload than I am suggesting.

It is worth mentioning at this point, I learnt about pacing at the Barbara Walker Pain Management Centre. There are not enough of these pain management centres around the country, sadly.

This graphic represents what happens if you don’t keep your body moving. None of us want this. These changes increase pain.

de-conditioning

People relate to me that they did a really good four kilometre walk but know they will now be stuffed for two days. I cringe. NO, NO, NO – do not do this! This is NOT Movement as Medicine! That is setting yourself up for failure.

I will be the first to say using Movement As Medicine requires very great care. I have a strong suspicion many patients (without the benefit of having attended a pain management program) dive in too drastically initially, find they hit the Boom/Bust cycle, then get turned off the concept of movement altogether. Not surprising really. My rheumatologist still says to me “and keep up the exercise”. Great – but he is not a movement consultant – he doesn’t tell me HOW.

I can imagine a patient without any other guidance taking the “get exercise” advice too literally and trying to do the exercise they used to do before they became unwell. That definitely will not work. Unless you are very, very lucky. Most of us are not that lucky, or we wouldn’t be sick in the first place.

It is impossible for me to paint a picture that covers everyone in one article, so please think about your own condition while reading my illustrations. Inflammatory diseases are notorious for being worst when we wake up. Movement sees us gradually thaw out. Whether this is to the point of no pain at all or somewhere along the spectrum depends and can vary from day to day.

At the moment I have one finger that is being particularly problematic. I have to splint it at night to prevent it locking. In the morning when I wake up it is very painful. If I did not use that finger in any way, it would stay painful and get worse, be worse the next day. And the next. I apply a heat pack to it. I stretch it. I massage it. Ultimately I have a pain free finger for the rest of the day. Yes, I do think it needs a steroid shot, I just haven’t had time to organise that, so in the meantime I’m using Movement As Medicine principles. Plus one finger is a good small example.

A contact on Twitter told me the other day she is currently doing 250 steps every hour. Many readers may think “why bother”. I congratulated her. For many of us, that would be a darn good starting point. We are not setting out to climb Mt Everest, we are trying to manage pain – completely different objectives! If 250 steps in your starting point, that is what it is!

In my original 2017 article linked above I talked about the mathematics involved. I suspect mathematics turns people off too, but it is critical. Here is what I said in 2017.

Let’s assume for the maths that like I could, you can walk five minutes before you experience discomfort. It is very important to know your starting point. Smartphones have easy calculators: the keystrokes for the below example are 5 + 4 = 9 / 2 = 4.5 * .8 = 3.6.

The important point here is just because you CAN do 5 minutes, that is NOT the starting point.

  1. Take that five minutes as your Test 1 measurement.
  2. After a suitable rest, do a second Test. The Test 2 result might be four minutes.
  3. Add 5 + 4 = 9. To find the average of your two trials: 9/2 = 4.5 minutes.
  4. Now you need your baseline, your official starting point. This is 80% of your average. 4.5 * 0.8 = 3.6 minutes, or 3 minutes 36 seconds.
  5. Increase at a rate of 10% from your baseline. 3.6 * 1.1 = 3.96 minutes. Let’s just call it 4 minutes!

Each day (or week depending on the type of activity) you increase by 10%. JUST 10%. On your calculator that is “current time” * 1.1 = “new time”.

10% a day increase is reasonable at a 5 minute walk, but for longer durations and other activities, the increase should be spread over a week.

Two factors control your Movement As Medicine activity. The duration AND any perceived change in your body during the activity. If you feel an increase in discomfort, you STOP! You do not push through. The mathematics apply to durations and also to increasing weights and other aspects. For example, the leg press. I will increase at 10%, so from 100 kgs to 110 kgs. Admittedly, it can be fiddly to find the right weights. Increasing from 50 kgs, you need to go find the 5 kg weights. Once at 55 kgs, there is no weight to allow you to increase to 60.5 kgs. In some cases the mathematics have to result in “as close as we can get”.

I’ll use my shoulders as an example of knowing when to STOP. Towards late 2021 my shoulders played up to the point I needed ultrasound-guided steroid shots in both shoulders. It was around the time my first biologic stopped working for me. Swimming definitely helps me keep my shoulders pain free BUT I am very, very careful about listening to my shoulders as I swim. If either of my shoulders starts to feel painful, I stop. That’s all the swimming I’m doing today, even if it is less that I did last time. I do not push through.

Shoulders are a good joint to talk about because I may have a degree of discomfort for the first lap – stiffness from lack of use. Over time you learn to recognise the difference between the discomfort that disappears during warmup and the pain niggle you might get after several laps that tells you to stop. Those two things feel very different. Swimming is something where you can’t reduce your range of motion, as you can in the “on land” remedial shoulder exercises I also do. So stopping is important. No, do not do another two laps to round it up (I’ve been known to do that). With the on land remedial exercises, I can reduce the range of motion or reduce the resistance – if that is then a pain-free movement, I will continue.

This article has covered just a few examples of NOT rushing in where angels fear to tread. Movement As Medicine is not about “doing what you did before”. It takes care and planning to get it right.

Other Recommended Reading:

A Dark Day

Trigger warning: this article covers issues that some people may find confronting.

Please be aware as you read this, I am fine. I debated about sharing this experience as I don’t want to worry anyone, but on the other hand the purpose of this site is to help people like me living with challenging health conditions. Yes, the primary emphasis is on exercise and Movement As Medicine, but so much of “life” impacts our struggle on a daily basis, I do venture off on non-movement tangents. This is one of them.

I feel if I do not share this experience, I am not being fair to my readers. One of my objectives is to illustrate we are not alone in our battles. The challenges might be different for each of us, but there are threads of similarity.

As we know, I was recently hospitalised. While there I had three methylprednisolone infusions. Shortly after coming out of hospital my prednisolone (by tablet) dosage was upped to 50 mg per day due to my ongoing psoriatic arthritis (PsA) inflammation. For me, that is a LOT of corticosteroid. It may not clinically be a lot, but I do not know that – I am the patient here, not the clinician.

Most of my life, I avoided anything “cortisone” sounding like the plague. Why? Well, the answer to that can be found in my recently published family history trilogy, starting with “The Background“. In case of “too long; did not read” reactions, short version is my mother committed suicide, I suspect as the result of psychosis – a possible adverse reaction to cortisone use. She had been on cortisone most of her adult life. Probably at higher doses that we now use. Consequently I have always been wary of carrying a possible genetic predisposition to an adverse reaction to the medication.

Over the years since my diagnosis of PsA, I’ve taken prednisolone periodically at generally small doses with no major issues. Sure, for me, it makes me as hungry as a lion, causes fluid retention, weight gain, disrupts sleep (OH, does it disrupt sleep) and my ability to control emotions is reduced. If I am angry, you will hear it in my voice and see it in my eyes.

Today is Wednesday. Yesterday started with absolutely no sleep Monday night. I had slept like a baby Sunday night, which may have been part of the problem – I wasn’t tired Monday night. And yes, Movement As Medicine does come into this because on Monday I did very little movement because I had been to see my GP, driving around, my ankles were sore etc: the very reason I was taking prednisolone in the first place, after all. So I went to bed not physically tired. I couldn’t fall asleep, even with melatonin on board. I did not sleep. All night. May have snagged an hour between 6 am and 7 am, but I’m not even sure of that.

So Tuesday was a pretty shit day, to be honest. It got worse as the day went on. I did not get dressed. There was no lipstick. I felt really, really flat. If anything, a bit like I had felt when I had a reaction to methotrexate. I think that prior experience may have been concerning me a little as well.

Please note: both the medications I talk about in this article work brilliantly for a great many people! I am NOT against the medications themselves in any way.

Now, I’m not sure how to make this next bit clear: if it is unclear, please ask for clarification. The doctor will ask (as she did when I rang) are you having any thoughts of self-harm or suicide. And my answer is “No, not for ME, but I am always aware BOTH my parents did commit suicide and am VERY clear to myself that is NOT where I want to go. HOWEVER, I’m very ignorant (Note to self – fix this ignorance) about what or how “it” could happen. Therefore I think about it in terms of the history and the fact I am on a related medication.”

Now, I have no clinical evidence of my mother’s suspected adverse reaction. However, neither am I going to ignore the possibility. Sadly, I can’t get clinical evidence. It is too long ago, I was provided no medical records at the time. It wasn’t deemed necessary to give kids their parents’ medical records.

At 6:30 pm last night I rang my wonderful GP clinic. I do love them so much! My GP was not available but I did speak to another GP. I explained the situation and said my biggest concern, I realised, was I had NO IDEA what to watch out for IF I was having or going to have a adverse reaction. I also pointed out it could just be the absolutely no sleep, I was aware of that. At this point I hadn’t slept for 36 hours.

The GP pointed out psychosis was considered a very slight risk adverse reaction: I said I understand that, but my family history sort of counteracts that statistic in my mind. I prefer to be cautious!

The GP gave me some contact numbers specific to my location (hence I’m not publishing them as not much use to people in Queensland, for example) should I feel worse at (say) midnight.

Because I was SO exhausted by bedtime I slept like a log and woke up this morning feeling normal. Well, normal for a sick person on ten prescription medications and a few non-prescription ones like melatonin and Panadol Osteo plus Coloxyl to counteract the effects of the pain medications. At no time in my previous eight years of this journey have I been on TEN prescription medications at once and hope very shortly we get that down to three and then two (one for the thyroid, one for the PsA – that’s enough). Do I worry about possible interactions of so many meds all at once? Yes, I do. I just hope if there was a problem it would have been discovered before now.

My message here is don’t be afraid to reach out to your medical team. I could have called my psychologist, my rheumatologist or my GP. I chose my GP because she is who I feel knows me best and would most easily understand where I was coming from. I feel really concerned for chronically ill patients who do not have continuity of provider, it is SO important in managing our conditions. Critical, in my view. But what would I know – I’m just a patient. That comment is made with a very cheeky grin – none of us are “just a patient”. I can’t emphasise strongly enough the benefit it was to me to be able to talk my concerns through with the GP last night on a telehealth. I was able to go to bed not worrying, which I feel contributed to my good night’s sleep.

I’m back to this version of me today!

Mental Health Contacts:

Lifeline: https://www.lifeline.org.au/ Ph: 13 11 14

Beyond Blue https://www.beyondblue.org.au/ Ph: 1300 224 636

I have written about the need for mental health support previously: We Need Mental Health as well as Physical Health

leg press

Variety can be the Spice of Life

#MovementAsMedicine does require some variety (i.e. adaptability) at times. When we consult remedial exercise professionals, they invariably provide us with a program of exercises to follow. For those of us who are pedantic people, we then set about following that program to the letter and can get quite frustrated if we can’t. This frustration can lead to us not doing what we can, when we can, even if we can’t do the whole program.

We need to be adaptable. As regular readers or fellow psoriatic arthritis (PsA) patients will know, PsA is notoriously unpredictable. It isn’t the only condition to be unpredictable, many are.

Let’s assume for the moment I (or you) have a program. But I wake up today and my wrists are borked. I have a choice. I can feel frustrated about the situation and throw the baby out with the bathwater and not do my program at all because I don’t want to leave blank spaces. Or I can simply accept the upper body is not getting done today, but I can do lower body.

Because I am my own trainer, my program is in my head. I adjust what I do in any given resistance (weight) training session based on how various bits of my body are feeling on that day. So I never leave blank spaces on a page – there is no page! Over the last eight years, I haven’t had to be as adapatable as I have had to be during the last six months or so. These have been a trying few months. As I write this article I’m not doing any weight training at all, much to my disgust, but the inflammation is just too high. Until we (“we” being mostly at this point my rheumatologist) get it under control, I’m resorting to water based activity.

Under normal circumstances, current predicament aside, I will leave out what may be problematic on any given day. Borked wrists? I’ll do lower body and core, I can catch up on upper body next time (or the time after). Thankfully my lower limbs don’t usually flare, so I rarely have to skip lower body although I would if necessary. There have been rare times when my piriformis muscle will be grumpy for a day or two and I do steer away from lower body work on those days.

Although yes, it does take us some time to learn to read our bodies, ultimately we, the patient, know our bodies best. I can now tell what is PsA related pain and what is not. For example, stiffness from lack of use! When I say it takes time to learn, I do mean quite some time. A couple of years at least. Even then, it is going to depend how your condition behaves during your learning and how well controlled it is by the medications. It is impossible to learn fine points of differentiation if your inflammation is raging at 100 miles an hour.

Yes, it is a bit of a Catch-22. On the one hand, movement is the very thing that helps resolve inflammation – lifting weights is a little bit more than just movement though and I don’t need to injure myself inadvertently. It does become a judgement call – is the inflammation just normal “typical morning stuff, move to get rid of it” or is it a bit more serious? Swelling plays a big part in my decision making too. If I have swollen hands, they’ll get movement, such as the warm water movement for my hands, but I won’t load the wrists or hands with weights. As an example, on Thursday last week I couldn’t even use my wonderful ergonomic mouse. Now, while we are here, that linked article talks about consistency and in some ways I may appear to be contradicting myself in this article, but that article is about maintenance under a relatively stable situation. Here I am talking about major condition discombobulation! Yes, I mention shoulder pain disappearing after a few reps and normally that is what happens. Right now though, I am in a different situation. I do think resistance training would help my anterior deltoids at the moment, but I need my hands to achieve that and so it isn’t happening right now.

Annoyingly, we need our hands for so many upper body exercises. In fact, just about all of them! So my biceps and lats (and delts) are getting off very lightly at the moment.

Don’t be afraid to be adaptable. Leave out bits of any program on days that a body part is problematic. Catch up later when that body part feels better. Talk to your remedial exercise professional, they will help you determine that line between being in a place where rest is required or where you should persevere. Sometimes it may be a case of reducing the range of motion or using a lighter weight for a few sessions. More reps, lower weight.

Just don’t throw the baby out with the bathwater. Variety can be our strength, just as important as Consistency. And don’t forget to PACE!

Wellways

Interview by Brainwaves

I was recently Interviewed by Brainwaves of Wellways.

The podcast can be listened to at https://www.3cr.org.au/brainwaves/episode/robyn%E2%80%99s-story-chronic-illness

Suzie (@saysgrumpysuzie) drew this tweet below to my attention this morning, an aspect we touched on in my interview.

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:

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    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.