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:

Robyn DunphyLeave a comment
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!

Robyn DunphyLeave a comment
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.

Robyn DunphyLeave a comment
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.

Robyn Dunphy2 Comments

The Tangled Web of Chronic Illness

Recently I described a less than optimal week which had included a fancy nuclear med stress test of my heart. This week, which is not yet over, has been another WTF? week in the life of this chronic illness patient. I’m sharing for several reasons:

  • For friends, family & co-workers of other chronic illness patients, to show “what happens”, enhance understanding
  • To highlight the complexity involved and why GPs are so important in our health management (wary of the NSW pharmacist prescribing proposal in cases like mine)
  • To illustrate the October and November episodes may well be related to each other – and to a tooth
  • Dental care needs to be included in Medicare

This article assumes the reader is not new to my writing – if you are, click on the included links for the backstory. One piece of information that may be missing from linked articles is back in May/June of this year I had a fever for six weeks. Continuously. No idea why at the time. Bloods, CT scans, nothing indicated why I had a temperature. Did the merry-go-round of my treating specialists: GP -> gastroenterologist -> rheumatologist -> endocrinologist. Then out of the blue I got a very sore tooth. Dentist prescribed antibiotics, temperature disappeared. I don’t know about you, but I suspect I had a painless tooth infection for six weeks. Just tuck this paragraph in your memory banks for later in today’s story.

So we roll forward to November 10. I had a painful tooth – different tooth this time. I also had flaring hands from the psoriatic arthritis. Skin was flaring on the left arm. I stopped wearing my partial plate as it “clicks” onto the painful tooth, I hit the Osteo Panadol. November 11 (Friday) I woke to the flare worsening. I needed pain relief. I took Osteo Panadol, Tramadol and Prednisolone (as per previously established protocols). I also took my temperature. Low grade, 37.4 (but given at my age my normal temperature is about 36.6, it was a little higher than I’d like). Me being me, I thought if this is no better tomorrow, I’ll call my GP. Good plan, right? Not all plans go according to plan.

Late in the day, I developed a rather nasty pain under my left scapula. I pulled out the foam roller, that’ll fix it! No, that didn’t work. Spikey ball? Minor relief. Massage ball? Also, technically, a fail in this case. Sticking to my plan of call GP tomorrow, I gave up on curing the pain, took pain relief and went to bed. In the middle of the night I woke up, as one does, to go to the toilet. Just one minor problem: I couldn’t lift myself up from the supine position without the pain under my left scapula wiping me out. I spent some time figuring out how to use my right side to get myself out of bed without contracting any muscles on the left. Yay! I’m standing! Woo hoo! Phew! Did what needed to be done and had the same issue laying back down. But I’d figured out what movement I could and couldn’t do, so I managed.

When morning came, no improvement, same problems. Called GP clinic, the advice was go to ED. So I did. One aspect that amazed me was this: despite the pain in trying to sit up or lay down, I could do my bra up with no problem. Our bodies are weird or amazing, depending on your perspective. Which ED to go to? The private hospital ED would cost me $480 out-of-pocket as the safety net threshold only applies to out-of-hospital charges! I decided the public hospital ED fitted my budget better. I trammed to ED. Mentioned to attending doctor about the tooth. I suggested maybe I have a tooth infection that is driving a PsA flare. Doctor looked at tooth and was very concerned about how loose it (now) was. This was considered a very likely scenario. Plan of action was I would go to dentist on Monday to see about tooth. ED gave me five Palexia to get me through to Monday if needed. I went home. By then the shoulder was miraculously perfectly fine. I rested, as I figure that was probably a sensible approach to the situation. I could almost hear my GP saying, “Just rest!”

By Sunday, I was going stir crazy from resting. It is, as we know, not really my style. I decided a one kilometre walk around the block was needed. As I walked, I felt a twinge in my right hip flexor. Uh oh. I also felt a little dizzy and had to lean against a fence for a few seconds. Flash back to my October event right there. It is a very minor twinge, nothing even remotely severe, I figured it would pass, just my body being flary given the tooth infection. Looking back on my notes though, my temp that morning had been 39.1 and I’d woken in a freezing/boiling cycle with a sore hip. Had forgotten all about the hip until I revisited my notes just now. Notes are kept for my GP, symptom diary. Useful, by the way, as we forget things. How did I forget I’d woken with a sore hip that morning? Obviously it didn’t last long, replaced by the hip flexor specifically, later in the day.

I was hopeful, wasn’t I? 2 am Monday I woke up to go to the toilet. I couldn’t move my right leg due to the pain. I lifted my leg off the bed with my arms so I didn’t have to contract leg muscles, grabbed the walking stick that lives beside the bed for just such events and got myself to the bathroom and back. Now, half of me was saying, “this is just another flare” and the other half of me was asking “but what if it isn’t?”. I already know from my October event that if I called Nurse On Call, given my history, they will call an ambulance. I figure I might as well save the time and call them myself. We decided I was not P1 (very reasonable), so I was allocated to the queue. While in the queue I had to somehow get to the front door to unlock it. While I didn’t time that journey, it felt like half an hour and I had to rest on the couch before heading back to bed. And find a nightdress. Ambos don’t need naked patients. And the recording had said have a mask on.

Ambos arrived and decided to do Virtual Emergency Department. That doctor advised “take the patient to ED”. So that’s what happened. I got my first try of the “green whistle”, that was exciting! Hey, we have to look for the positives and innovations are positives! It was pouring rain as I got in the ambulance, we all got wet.

Kind of a rinse and repeat of Saturday with a few extras thrown in: x-ray of leg/hip, x-ray of teeth, antibiotics prescribed. I called my dentist from ED, but dentist was closed. Thankfully, dentist called back and booked me in for Tuesday. CRP had jumped from 28 on Saturday to 85 on Monday. ESR was now 61. Definitely something going on. Tooth again got the blame. Has this happened before, I was asked. Actually, aside from Saturday, yes, it has. October 25 my wrist was so sore I couldn’t even cut cheese. November 04 my hands had been swollen and sore, but I’d put that down to a reaction to my second Shingrix vaccine. November 25 I had woken with an extremely painful left leg (probably ITB). All these things had resolved within 24 hours though. Suggestion is made that perhaps I’ve had a low grade tooth infection for a few weeks but as I didn’t have pain in the tooth, I didn’t realise.

That’s when I first thought back to my October event. Now, as luck would have it, I had a gastroenterologist appointment for Monday afternoon. From ED I called to reschedule. That appointment happened yesterday. My first question to her was “Can a tooth infection upset the gut?” Yes, was the answer. Her advice, on hearing the story, is we get the tooth sorted first, manage the gut in the meantime, then reassess. After all, the gut was determined to be the cause of my October event, but now we are considering the tooth was causing the gut to misbehave.

Am I tearing my hair out? YES! I’m over it! I’ve missed most of my exercise routine for the week, I’m losing a tooth on Monday and that will require my partial plate to be remodelled after the extraction site has healed. I now realise we may have all been chasing down wrong paths for a month and that is no-one’s fault – it is a fact of life with us complex comorbid patients. An elevated CRP isn’t a specific indicator, nor is an elevated ESR. I didn’t realise I had an infected tooth until late last week so I couldn’t tell anyone I had an infected tooth. Also, we do get used to waking up with a sore hand one day or a sore foot another day – we often pay little heed to these “glitches” – they become our normal. Except when they aren’t.

My GP rang proactively arranging an appointment for me for the Tuesday evening. I am sure she stayed late to fit me in. She wanted to make sure we now had all our ducks in a row and I love her for it. I’ve also written to my rheumatologist to bring him into the loop, although there’s not much he can do about teeth!

To top it off, at this time there are shortages of antibiotics. So I’ve got a single course of ten tablets. Let’s hope that is enough to ensure the local anaesthetic works! I needed two courses to clear the May/June tooth infection.

It isn’t over – yesterday the knuckle on my right forefinger decided to develop a bump. Redder than my camera captured. Interestingly that particular knuckle has a piece of cup stuck in there – a prime PsA attack site, therefore, I think. It’s OK, it too will subside. Once the tooth is gone. It seems possible the infection has also impacted my sinuses, so I’ll be interested to see if my blocked nose at night issue resolves as well. That would be good!

For those wondering why would a tooth infection cause PsA flares, it kinda goes like this. As with many treatments, my treatment for PsA suppresses the immune system, so not only are we more susceptible to infections in the first place, we are also less able to fight them off. The quote below may be scary reading to novices, but we live with it. Note the higher risk of developing shingles, which is why I had the shingles vaccine. A normal, healthy person may have fought off the tooth infection without batting an eyelid.

Serious infections. RINVOQ can lower your ability to fight infections. Serious infections have happened while taking RINVOQ, including tuberculosis (TB) and infections caused by bacteria, fungi, or viruses that can spread throughout the body. Some people have died from these infections. Your healthcare provider (HCP) should test you for TB before starting RINVOQ and check you closely for signs and symptoms of TB during treatment with RINVOQ. You should not start taking RINVOQ if you have any kind of infection unless your HCP tells you it is okay. If you get a serious infection, your HCP may stop your treatment until your infection is controlled. You may be at higher risk of developing shingles (herpes zoster).

https://www.rinvoq.com/

The existence of an infection though, can stir up the immune functionality we do have left and then PsA sees a crack in the wall and tries to break through. That’s a very lay description! I’ll never forget being told that my biggest Covid-19 risk factor was considered to be my underlying inflammatory condition. PsA and Covid-19 could have quite a party.

Let us look at the current news topic of pharmacists prescribing and the argument for Dental being covered by Medicare. Based on my symptoms, I could have many things and I have a complex medical status to consider prior to any treatment. I am knowledgeable about my own medical situation, but many patients are not and the knowledge and experience of the GP is invaluable. I have great faith in my pharmacist – I seek out their advice re drug interactions and what med to not take with what other med every time. I’m not as confident a pharmacist has the medical knowledge to safely and effectively diagnose me and then prescribe the right medication for me. The second point, dental coverage, should be obvious. My teeth have caused considerable angst and pain and are costing me dollars other patients may not have. It is false economy to not ensure we look after people’s teeth. Teeth lead to many other health problems, some extremely serious, which cost a lot more to treat that fixing a tooth initially.

In closing I would like to emphasise none of the above is in itself, for me, medically serious. My son-in-law is fighting leukemia – THAT is medically serious. That is life threatening. My challenges have been been painful, probably costly to the health system and certainly inconvenient. Yes, the outcome could theoretically (based on symptoms) have been more serious, but it isn’t. However, all chronic illness patients live with this complexity and disruption to our lives reasonably constantly. And every day we grow in number. THAT I discuss in detail in Will Society Adapt? When? How?

Robyn Dunphy3 Comments

(Mostly) No Pain is FANTASTIC!

A few of my recent articles have been quite serious, so it is time to celebrate progress! After starting my new medication on January 14, 2022 I am happy to report I’m functional again! Friday I started Week 7 of my new medication and I very pleased with progress. Let’s hope it keeps working!

Readers may recall my list of painful bits from I Sat in My Care and I Cried. It was a pretty long list.

What was painful?

  • Shoulders
  • Ankles
  • All Toes
  • Left hip
  • Elbows
  • Wrists
  • Most fingers
  • Hands
  • Knees (yes, even the operated knee felt swollen, but not painful, the right was painful)
  • Neck
  • TMJ (jaw joint)
  • Left Achilles Tendon
  • I also had some plantar fasciitis

Today I can happily report all of that list has resolved except the shoulders and the plantar fasciitis. While I was on Prednisolone and the new medication together, the shoulders and the plantar fasciitis were barely noticeable, but as I tapered off the Prednisolone both reappeared. The plantar fasciitis is minor, only noticeable when I first get out of bed in the morning and hopefully will continue to improve the longer I am on the new medication.

The shoulders I am not so sure about. At my age and with prior injuries, I suspect the root cause of the shoulders may not be psoriatic arthritis (although it is undoubtedly not helping). The right shoulder is the worst of the two and that is the shoulder that has in the past suffered a torn rotator cuff. I’m doing lots of remedial exercises which will hopefully improve the situation (I’ll admit to letting those lapse while I was battling everything else). It is time to focus.

Other than that it is great to be able to do all these things again, pain free:

  • Fasten my bra (shoulders are at least allowing that)
  • Hold my full coffee cup in one hand (wrists)
  • Get out of bed without mobility aids (crutches or walking stick)
  • Sit down and stand up without immense difficulty (quads & glutes weren’t firing)
  • Be able to clench my fists (no, I’m not planning on using my fists!)
  • Turn taps on and off without pain (fingers & wrists)
  • WALK!!!!! (mainly ankles, although right knee & left hip had spasmodically interrupted)

That is not an exhaustive list, of course, but hopefully sufficiently illustrative! Functionally, I am almost back to (my version of) normal. I’ve been to the gym and done some hydrotherapy.

The only downside seems to be lethargy. I am quite tired. This may be temporary and may be due to my body adjusting to the new medication, the (tapered) cessation of Prednisolone and quite simply normal life things such as work-related stress. In order to give my body the best chance I have negotiated with my employer to drop my working hours to 24 hours per week. Initially this is for a temporary period of six months and then we will reassess.

The tiredness could possibly be my thyroid firing back up, although based on my last ultrasound we doubt that. Even so, that fact I do have an unhealthy thyroid cannot be overlooked. I’m due for monitoring checks again in April. I was, I gather, a little unusual as a radioactive iodine recipient. Many patients’ thyroid function becomes hypoactive after the treatment but mine never (not yet anyway) did. Both hypoactive (underactive) and hyperactive (overactive) thyroid conditions can result in tiredness/lethargy. Mine, theoretically, could go either way!

I am very concerned about the lack of strength training I have done over recent months as retaining muscle strength really is very important with this and many other arthritic conditions. However, I can’t rush back, I need to pace up again. That is part of the reason for reducing my working hours.

The shoulders, particularly the right one, may be being exacerbated by typing and mouse use. This is something that will also be reduced by reducing my working hours. Of course my bank account is NOT going to like less income, but that is simply a fact of life for those of us with chronic conditions: we have to make our bodies a higher priority than our finances, otherwise we end up with no finances at all as we lose the ability to work.

Overall, pretty darn happy! Of course, there are no guarantees. I’ll just enjoy the improvements while I have them! This gives me space to concentrate on rehabilitating the grumpy shoulders. I’m seeing my myotherapist regularly at the moment to assist.

Concurrent objective is to rid myself of the weight gain from the Prednisolone – there’s always something!

If you are interested in the fascia of the body, this is a great video! This is related to my seeking myotherapy treatment at the moment. More on this another day.

Robyn Dunphy4 Comments

The Right to Die at a Time of Our Own Choosing

I am aware some people may find this article confronting or disconcerting, so I caution readers to consider whether they are ready for this topic. If in doubt, perhaps revisit at a later date.

Western society in particular seems to have a very unrealistic approach to death. There is a tendency to avoid death at all costs. We have no choice about being born, at least grant us the dignity to control our end of life.

When I was about 12 I watched my grandmother spend the last years of her life bedridden and with dementia in a care facility. I thought this was a very sad ending to her life. When I was about 16, a partner in a local legal firm passed away at his desk, almost but not quite mid-conversation. By comparison to my grandmother’s suffering, I thought what a wonderful way to pass. He was doing what he loved, retained full mental capacity to the end, not a day in hospital. That was the sort of death I have envisaged for myself most of my life. I would be swimming or walking and the it would just happen. I suggest many of us do have similar thoughts, if we think about it at all in our younger years particularly. It is perhaps only when we have health challenges (which can be any age) or later in life that we think about the realities of what might happen.

In 2018 I read the best article I have ever read on this topic: The doctors who think it’s become too hard to die. It is a beautifully written article and while I do share some quotations herein, I highly recommend you read the article.

From the article linked above – Professor Hillman’s family experience

In some respects, this article has a connection to two other recent articles of mine.

In Victoria we have Voluntary Assisted Dying (VAD) legislation which was a wonderful innovation, long overdue, when introduced. HOWEVER it is very restrictive. The patient and ONLY the patient can request VAD at the time it is deemed appropriate. In addition the patient has to be terminal (within a specified timeframe) and experiencing unacceptable suffering.

You can only access the voluntary assisted dying medication if you meet the conditions set out in the law. These conditions are:

  1. You are in the late stages of an advanced disease and expected to die within weeks or months, but not more than six months (or 12 months if you have a neurodegenerative disease, such as motor neurone disease).
  2. You are experiencing suffering, which you consider unacceptable.
  3. You have the ability to make and communicate an informed decision about voluntary assisted dying.
  4. You are making a voluntary, continuing and fully informed decision about voluntary assisted dying.
  5. You are an adult, 18 years old or over.
  6. You are an Australian citizen or permanent resident.
  7. You live in Victoria and have lived in Victoria for the last 12 months.

If you do not think you will meet these conditions but are thinking about voluntary assisted dying, you can still discuss this with your doctor.

https://www.health.vic.gov.au/patient-care/do-i-meet-the-conditions-for-voluntary-assisted-dying

This means we cannot plan ahead. People, whether 100% healthy at the time or already patients, cannot put in place, in advance, instructions to be carried out under certain future circumstances. Our agency, our control of our own life, is denied us by social convention. Admittedly, people often don’t think of such circumstances in their younger years – it isn’t until the likelihood becomes apparent that any of us start thinking “what if….”.

The desire to keep sick people alive for as long as possible, he says, is reinforced by doctors who are “programmed to make you better”.

“Doctors hate saying, ‘I can’t do anything’. We’re curers, healers, miracle workers,” he says.

The outcome, he says, is that it’s hard for us to recognise when a life is better left to end.

https://www.abc.net.au/news/2018-07-28/rethinking-our-approach-to-death-and-having-a-plan-for-dying/10014582

Interestingly, the above quotation was paraphrased unprompted by one of my own doctors when I was talking to her about the topic I cover in my Will Society Adapt? When? How? article. She emphasised the same sentiments re “curers, healers, miracle workers” and “programmed to make you better” expressed above. At what point does “first, do no harm” become contradicted by trying to prevent death? Well, you see, that phrase actually isn’t in the Hippocratic Oath at all. If I have tweaked your curiosity, visit https://www.health.harvard.edu/blog/first-do-no-harm-201510138421 at Harvard for a discussion on the topic.

If (as I have) we appoint a Medical Treatment Decision-Maker, that person can request the cessation of treatment on our behalf, but they cannot request intervention to proactively end life.

Any number of medical situations could arise where I might be suffering but ALSO be deemed cognitively incompetent. Another quote from the VAD link above: “This means that you cannot request it in an advance care directive, because voluntary assisted dying is not available to you once you have lost the ability to make a decision about it“. The very situation I personally fear most, that of lying in a hospital or aged care home bed in pain from my arthritic conditions AND with severe dementia, being kept alive merely so I am not dead, cannot be dealt with in a manner that allows me agency over my death. I find this horrifically cruel. I was quite surprised when a psychologist said to me “but you won’t know”. No, I might not (are we 100% sure of that?) but personally I would rather the costs and health care resources involved be used to help a person with a more favourable prognosis.

Many of us have a family history of dementia. I’m participating in a study at the moment which is looking at ways to slow or even prevent the onset of dementia, but being part of a study doesn’t mean I won’t ultimately develop a form of dementia. Studies have recently indicted that those of us with underlying chronic health conditions in middle age (oh, yay, lucky me) are two and a half times more likely to develop dementia. Another ramification of us being able to keep people living longer, as discussed in previous articles.

Having two or more chronic health problems in middle age more than doubles the risk of dementia, according to a study that researchers say underscores the importance of good health earlier in life.

https://www.theguardian.com/society/2022/feb/02/two-chronic-health-problems-middle-age-double-dementia-risk-multimorbidity-study

Other life events could leave any of us declared to no longer have decision-making capacity. I could have a car accident, I could fall and suffer brain damage. I could catch a virus that leaves me with brain damage (looking at you, Covid-19). It may not be dementia.

Yet should such a situation arise, we are trapped. Literally trapped. For many conditions, if treatment is withheld the conditions may become terminal quite quickly. For many other conditions, however, that is unlikely: we could be lying there for years because we do not have conditions that are terminal in and of themselves. Ceasing treatment may simply mean higher pain levels – I’ve already had a taste of that in I Sat in My Car and I Cried. I can only imagine how bad that could get.

The media has been alive lately with horrifying stories of the state of care in privately run aged care homes, yet clearly if I were in the state described above I would be unable to be cared for at home by my offspring (my daughter is only 24 years younger than I) or via My Aged Care. Nor would I want to be – I would want to be allowed to say my time has come, I’m leaving now. Irrespective of the quality of any aged care home (a topic for a future article), many of us don’t want to spend our final months or years in insufferable pain or other circumstances and unable to “check out”. I do understand that doctors would manage the pain, but that seems rather pointless doesn’t it? Just managing the pain with no prospect of any quality of life, just so I’m not dead.

Under NO circumstances would we have let a farm animal suffer in such a state when I was growing up on the farm. My father would have been horrified at the thought of putting any of his animals though such a situation. Yet humans are happy to force other humans to suffer, simply so we can say they aren’t dead.

I understand completely the ultimate decision can be painful for relatives and for the doctors. I believe this can be traced back to our culture’s unwillingness to accept the simple fact that there is nothing guaranteed the day we are born – other than the fact we will die. That is the cycle of life. Other cultures view death quite differently.

Allowing us to legally set out clear, concise instructions ahead of time would be the compassionate approach. Not everyone will make the same choices. A contact on Twitter related the case of their parents the other day. The mother wanted to go when she considered the time was right given her health state, yet the father wanted to do anything possible to extend his life. It is an individual choice.

Dr Corke says medical practitioners also need to be honest with patients and their families when certain interventions might be futile.

“We’ve come to a point where there’s always something more that we can do and we can never stop,” he says.

https://www.abc.net.au/news/2018-07-28/rethinking-our-approach-to-death-and-having-a-plan-for-dying/10014582

Yes, there is always another medication we can try. Or another surgery. A friend of mine had pelvic exenteration surgery – this is very invasive surgery I have specifically stated in my Advanced Care Directive I will not have. That is my choice.

Even though I can’t currently ask for VAD ahead of time, I have done everything I can do to take the guess work out of my treatment, should such a time arise. I’ve expressly given examples of treatments I do not want. I’ve even mentioned VAD just in case the legislation changes. As the legislation currently stands, this is the best we can do. I hope, in time, we see more compassionate provisions in the legislation. We should be allowed to specify, well ahead of time, our choices.

There is a two episode documentary on ABC iView, Laura’s Choice, which you may find of interest and comfort. Laura travelled to Switzerland to avail herself of VAD.

Laura Henkel has decided she wants to end her life on her own terms, and describes why she has asked her daughter Cathy Henkel and granddaughter Sam Lara, both filmmakers, to make a film about it.

https://iview.abc.net.au/video/DC1917W001S00

I’ll leave you with Dr Corke’s empathetic words.

https://www.abc.net.au/news/2018-07-28/rethinking-our-approach-to-death-and-having-a-plan-for-dying/10014582

Photo credit M Bryson Photography

Robyn Dunphy6 Comments

My Personal Weight Management Under #StayAtHome

Yesterday I tweeted:

I did not expect the reaction! I promised to write in more detail what I am doing to achieve this, so here it is. I want to stress this is what works for me, given my current circumstances. It is really intended for people of similar age and in similarly physically challenging circumstances. While the #StayAtHome situation is common to most of us, of course the knee issue is an added complication. Unlike my recent short videos, this will be a long read, so buckle in folks!

Situation Summary

I have been in self-isolation since March 1. The gyms closed, the pools closed. I am a weight training person: suddenly I couldn’t even do upper body or hydrotherapy. The knee is preventing any lower body weights work or walking. I am also nearly 65. We all know as we get older it becomes harder to manage our weight than when we were 25.

I was terrified of gaining weight and making my knee pain worse. Due to several changes of medications and predisolone off and on over the period in question, I had gained a few kilos during late 2018/early 2019. I have been very successful in reversing that trend, especially once my clinical drug trial got underway, with the suggestion and support of my endocrinologist to adopt the philosophies of Dr Michael Mosley. I’d never known it was considered safe to eat 800 calories a day. I do now! Before you stop reading in horror, I’m not eating 800 calories a day now! But it is a damn good kick start to get you going and I do still apply the macro principles espoused by Dr Mosley.

Comfort Eating

Several responses to the above tweet raised the issue of comfort eating. This is an issue that is exacerbated by isolation, anxiety (e.g. about the current health crisis of Covid19) and boredom among other drivers. A chronic illness patient I know once said to me she stopped comfort eating when she realised she was “eating her pain” – and she didn’t just mean physical pain, she meant emotional pain as well. Once she had that epiphany she was able to stop. She looked for and found other ways to deal with her pain.

I find boredom can be an issue for me, especially when I can’t go to the gym or swim and I am locked away. For me, the recording (discussed below) helps immensely. I can see what I’m eating instantly.

I have no great solution for comfort eating, I am sorry, as it is a bit out of my field of expertise. I would suggest perhaps consulting a psychologist if it is impacting your weight management efforts. Mental health is a critical factor and if you have a chronic illness, in Australia you are entitled to a Mental Health Care Plan. Use it.

Understand Your BMR

Before we even look at food, my recommendation to anyone on a weight management journey is to understand your Basal Metabolic Rate (BMR). This is the number of calories your body burns being alive. Nothing else, just being alive. Our BMR drops as we age. This calculator at MyDr.com.au is the one I use: http://tools.mydr.com.au/tools/basal-energy-calculator

Pop in your details at various ages and you will see the BMR drop. Of course this is a average. If, like me, you are an avid weights person you will have more lean muscle mass and your BMR will be higher. Conversely, you may be on medications that actually reduce your BMR as a side effect. Even so, as a place to start, it is a good indication.

If you do no exercise and you eat more than your BMR, you will gain weight. There is more to it than that if we want to delve into the science, but for our purposes, it is that simple, really. Note well: exercise in this context includes NEAT!

Be very aware though, your current weight may drive your BMR reading up. If your BMR says 2,000 calories a day, you don’t want to be eating that if weight loss is your goal. Try putting your target weight into the calculator – work from that.

Net Calories

If I am exercising in my normal manner, I live by net calories. My calorie target for the day plus what I “earn” exercising less what I eat. When I cannot exercise “properly” as is the current case, I aim for less than my BMR. At the moment I aim for 1,200 calories a day or less, with the odd 800 calorie day thrown in for good measure.

When I fill up my car the fuel tank capacity limits how much I can put in. Unless the car burns the fuel, no more will fit. Humans are not limited in the same way – if we don’t burn it, we just expand to make room (store the fuel).

Record, Record, Record

I cannot stress strongly enough to record your food intake. If you are anything like me, you forget that snack you had at 10 am. Or you don’t realise that SMALL muffin you grabbed en route home from the pharmacy was actually 530 calories! I use My Fitness Pal, there is Cronometer and various other apps out there. Find one that you like.

Recording means measuring. Get food scales. Measure.

Dietary Protein

My next tip is to look at your dietary protein. Are you eating enough protein? From talking to people I suggest many, especially older people living alone, are not eating enough protein. Without enough protein we can feel hungry and snack (usually on carb heavy stuff) unnecessarily.

My interest in dietary protein came about from my own experience. I noticed my protein levels had dropped when I reviewed my My Fitness Pal recording at one stage back in 2017. I was also in more pain from my psoriatic arthritis, although I wasn’t thinking of a causal link. I upped my protein for general health reasons and suddenly my pain levels dropped. Hmmmm, I thought. At the physiotherapist, I picked his brains, “Are you aware of any research around dietary protein and pain levels?”. No, he wasn’t aware of any so I came home and researched. This is one of the articles I found, which I rather like as it is succinct in stating the findings.

Effects of inflammation and/or inactivity on the need for dietary protein

Remember too that a 100 gram steak is NOT 100 grams of protein. It is about (depending on cut, quality, etc) 23 grams of protein. Know your protein sources.

Serving Sizes

All food packets have a recommended serving size. These are guidelines, not mandatory rules. Most bread packets have a serving size of two slices. I do not need two slices of bread under my omelette (see main photo above), I won’t burn that extra fuel.

My favourite high fibre muesli has a serving size of 45 grams. I have 35 grams with 160 grams of high protein yoghurt. I don’t miss the 10 grams, but over a week it adds up to less calories.

Adjust serving sizes to suit your circumstances. When I’m able to lift weights again, I’ll go back to 45 grams of muesli!

Ease of Preparation

Some people love cooking, others do not. Other people have physical challenges around standing chopping up vegetables, for example. Some of us have days where our medical conditions flare. Living alone can result in wastage as fresh vegetables go off before we use them. How I deal with this is frozen vegetables. No, I don’t find them particularly wonderfully cordon bleu – but they serve a purpose. Prepped, pre-measured, 2.5 minutes in the microwave. Here is one instance where I double the serve – as each bag contains two standard serves.

Another variety with chicken.

I’ve found this frozen spinach great for omelettes!

Two blocks of this (about 50 grams) with two eggs. I microwave it per the first half of the instructions, drain and pop in my non-stick pan for a minute or so, pour beaten eggs over. Cook. Greens and protein in one simple meal.

I stick to fresh salad vegetables such as lettuce, cucumber, mushrooms and tomato. They are easier to buy in “as needed” quantities. Of course, as I am in isolation and receiving grocery deliveries, that is more difficult. Another benefit to frozen vegetables at the moment as I’m not dependent on deliveries to have vegetables.

Meal Replacement

Eating the increased amount of protein as discussed above and keeping calories down can be a challenge. I was also told by a friend (I have NOT substantiated this) that in some cultures older people eat very little late in the day, but it makes sense, especially when there are reduced levels of activity.

I have been replacing most evening meals with a protein shake. This brand was recommended to me by a work colleague who is a amateur marathon runner. I chose this product.

I’ve tried various meal replacement shakes and work out protein shakes over the years, but I really do like this one as it is virtually all protein and suits my particular needs well at this time. Once I’m back in the gym, I’ll change to one of their “work out” formulated products and probably not use it as a meal replacement but as a work out supplement.

The cost is $2.13 a serve, which is cheaper than a steak! I buy the large container because it is cheaper per kilo and is delivery free.

Carbohydrates

You will notice not one photo of potatoes or rice. I am a very low carb, healthy fats, high protein eater. I do eat fresh fruit: bananas, peaches, apricots, apples, grapefruit, plums, mandarins. While sugar is the bane of my existence, as it is in everything, fruit has other health benefits. I do limit my intake to two pieces of fruit maximum a day.

Did you know there is 11 grams of sugar in a cup of milk? Anything low fat is often high/added sugar. I tend to triple check the sugar content of anything that is labelled “low fat”. The version that isn’t low fat may actually be better for you.

I found a great low carb, high protein bread that is really nice, highly recommend!

Watch out for “hidden” carbohydrates. This label is a classic example.

Knowing the calorie value of each macro (fats X 9, carbs and protein X 4) my mental arithmetic could not see where the 337 calories was coming from. See the red arrow? Yes, glycerol. 4.32 calories per gram. A whopping 14.3 grams! In the USA it is required it be included in the total carbohydrates. Not in Australia, it seems. Read labels, be aware of possible hidden stuff you don’t want.

Emergencies

Have healthy food you can prepare with no effort if necessary. This prevents grabbing something carb/sugar heavy. I keep four of these in the freezer for flare days. I like these ones, but everyone’s tastes are different. Find ones you like that you can have on hand for emergencies. These two are usually on special for $4.00 each, other varieties may be dearer.

I also have tinned salmon which requires no preparation or cooking. Never run out of eggs!

Treats

Yes, treats. Gotta have treats! At nearly 65 and not aiming to appear on the cover of Vogue anytime soon, I’m not going to be a martyr.

At the moment I am alternating between two treats I allow myself, ONE treat a day.

20 grams of this:

or 67 grams of this:

The 20 grams of chocolate is basically 50% sugar – not really a good choice, I’m eating 2 teaspoons of sugar. But we have to cut ourselves a little slack!

The ice cream (comes in chocolate too) is a much healthier choice as you can see from the label. This is a serving (on a bread and butter plate).

If I am out going to the doctor or the pharmacy I may well indulge in a skinny flat white and a sweet treat – but that would be once a week at the most. More likely once a month under our current #StayAtHome rules and doctors doing telehealth!

One-liners

  • Drink plenty of water – helps you feel full
  • Watch how many coffees you have – can be 50 calories an instant coffee (4 grams raw sugar)
  • Get enough sleep (lack of sleep affects cortisol levels)
  • Eat breakfast
  • Eat slowly (mindful eating is a thing)
  • Eat ice cream with a teaspoon
  • Use smaller plates, the meals I have pictured here are on my entree plates
  • No or at least very minimal alcohol – empty calories
  • No soft drinks (unless used as a small treat)

In Conclusion

I’m reiterating: this current regime of mine is for a particular set of circumstances: minimal activity, isolation, age, pending replacement knee surgery (so very important I not gain weight), pain management requires weight management.

This is certainly not how I eat when I am weight training three or four times a week and swimming two or three times a week. It would not be how I would eat if I was 25.

Some of my weight loss this last month will have been muscle, which concerns me, but there is little I can do about that at the moment.

ALWAYS check with your health care professional for your specific circumstances!

Please ask questions in the comments, as anything you are wondering about may be a question other readers have as well.

 

Robyn Dunphy2 Comments

Ditch Your Handbag!

Even for well people, this situation is not good. For many people with a chronic condition (perhaps a musculoskeletal condition), it is even worse. It is vital we pay attention to our posture and our body balance. By body balance I don’t mean standing on one foot (although that IS a very good exercise) I mean ensuring our muscle strength and length on each side of our body is balanced, that our chest and upper back muscles are balanced. For every push exercise, we balance with a pull exercise. Rock hard quads are great, but don’t ignore the hamstrings!

What has that to do with handbags? Look at the photo. If I walk around too often like the middle image, what do you think might, over time, happen to my shoulders? The muscles on one side will be over worked and I may develop a postural abnormality. This can lead to pain and most of us do not want that.

If you rarely use a handbag, fantastic. However if you are travelling to and from work on public transport five days a week, then walking around town (getting incidental exercise) at lunch time, the hours add up.

Even if you do not yet have a condition to manage, this handbag on one shoulder habit is still not a good thing. Slinging a backpack on one shoulder is exactly the same effect. Not a good thing. Because we are creatures of habit, we do tend to use the same shoulder each time. If we swapped it around evenly, it might not be so bad.

You may keep a pretty handbag for social events. Or a businesslike one for job interviews. Other than that, ditch the handbag and invest in a backpack. Or several. There are a wide variety around these days and many look remarkably like handbags or can be disguised as one quickly if necessary.

There are even ones that can be brought around to the front for access without taking them off – very nifty.

If you do not have the shoulder mobility to use a backpack and you carry a handbag, remember to share the load between arms.

Short and sweet, just my tip of the day!

 

Robyn Dunphy2 Comments

Incommunicado Quads and Walking Sticks

I know I’ve been incommunicado – unfortunately the quads in my right leg also went silent – so silent I couldn’t move my right leg. At 1 am on a Friday morning, not knowing what was wrong, I’ll admit to being a little panicked.

This was a few days after I’d had some very minor, completely unrelated surgery, so it was a bit of a busy time. My knee was already playing up then, as the hospital had helped me into a wheelchair from the taxi on arrival for admission.

Initially I thought I’d just been lying funny and my leg had “gone to sleep” and would recover in a few minutes. When it didn’t, I was a little more concerned. I couldn’t actually make it out of the bedroom – every time I tried, using the windowsill as a walking stick, then swapping to the bed frame – I’d get halfway across the end of the bed and feel SO nauseous I’d have to lie down again. Took me three or four attempts to actually get out of the bedroom. The doctor later told me this would have been due to pain, yet I do not recall any pain, I just could not use my leg. Well, yes, it was very painful if I put any weight on it, but I was studiously avoiding doing that – or so I thought!

To cut a very long story short, I dragged my poor daughter out of her bed, a 40 minute drive away, to take me to the emergency department. By 10 am I could lift my leg about 1.5 centimetres off the bed in ED. By noon I could bend it 90 degrees! Yay! I did not want to be admitted because the following week I was starting a clinical drug trial and intervention at this point might very well have excluded me. More on the drug trial in my next article – it is FANTASTIC.

So I was allowed home with a prescription of rest and elevation. The knee was rather swollen. Something else I didn’t need. It was the swelling in the knee that cut off my ability to use my quads. I should have known: earlier in the week I’d used an ice pack. I remember thinking “This ice pack isn’t very cold” then popping in on my left knee for a moment and thinking “This ice pack is FREEZING”. Clearly there was already a bigger problem brewing than just a sore knee.

My quads shutting down had nothing to do with my psoriatic arthritis. This was just a new problem arriving with very bad timing.

An MRI later and the results were in: “significant osteoarthritis, particularly behind the patella”. Oh, great – just what I need – not.

I got one of those awfully boring grey hospital sets of crutches so I could get around. Of course I thought I’d only need them for a day or two. Umm nah. I did manage to get down to one crutch, but I hated the grey, the cuff didn’t fit properly over my denim jacket and I was about to go to a conference in Sydney (more on that in a later article too). So I bought a very pretty walking stick (see above). If I had to use one, I was going to at least be semi-stylish!

Second problem was how to rehabilitate this knee. My rheumatologist advised (just as well, really) exercise to build my muscle strength back up. With the challenges I’ve had since January with medication changes and the resultant psoriatic arthritis flare, my exercise had taken a temporary back seat. It doesn’t take long to lose strength, especially as we age! I am reasonably sure this contributed to the osteoarthritis letting me know it was not at all happy with me. In order to make 110% sure I was doing the right thing, I enlisted the help of an exercise physiologist, Jack. Yes, I’m a personal trainer, but in this specific case I wanted to triple check my approach was correct. Jack has higher qualifications than I do and I do not hesitate to call in the big(ger) guns if necessary. He did get me to start a little slower than I might otherwise have done (a good thing), but by the second appointment he essentially let me loose. I did pick up some nice new very specific rehab exercises from him and am very grateful for his guidance and expertise.

I retired my walking stick on August 29th after six weeks. Yesterday I was back on the leg press, high reps, low weights. VERY low weights. I did one set at 40 kgs and two sets at 60 kgs. I was doing 160 kgs last year! This picture won’t mean much to readers, but to me it was getting my mobility back!

I’ve also been doing hydrotherapy. I’m “allowed” to do as much hydrotherapy as I like. Jack was thrilled I was doing squats in the hydrotherapy pool, I was thrilled he was thrilled with my adaptation! I do them out of the pool as well, but in the pool is good, especially with this darn knee.

Back in 2014 I’d had a Synvisc shot in my left knee (which was great) but of course that strongly indicates that left knee is not all that wonderful. It also indicates (although I didn’t have an MRI of the right knee back then) that perhaps both knees were a little under the weather back then. I had an arthroscopy on this right knee many years ago and until now had no further issues. Well, now I know I have two knees requiring a little extra care and attention. With the extra load the left took while my right was on strike, by the time I retired the walking stick, my left knee was reminding me it is no longer a perfect 20 year-old knee. I threw my hands in the air and applied the rehab exercises to both knees.

I’m lucky – I have been able to retire the walking stick. Using one is like driving, it takes a long time before it becomes second nature. I felt I was on “L” plates the whole time. I’d drop it when trying to juggle bag, stick and anything else I happened to have – such as a morning coffee. Getting on and off trams was a challenge but at least I was no longer one of the invisibly ill and people jumped up to give me the special needs seats. I now had a badge. I never seemed to be able to lean it anywhere without it falling over – poor Cleo (my cat) nearly got whacked by the flying walking stick several times as it fell to the floor. I felt I just could not get it right. I also felt SO SLOW.

I have a new appreciation and understanding of those who use mobility aids permanently or semi-permanently. In the last week, I carried it with me, but used it less and less as my knee recovered – however then people look at you in very odd ways as you are carrying but not actually using a walking stick. I never thought of getting a folding walking stick – lesson learnt!

That particular situation is much better addressed by Kristen Waldbieser, who does not need her wheelchair 100% of the time.

Between minor surgery and the above, I hope you forgive me for being very quiet. I’m going to make up for that in the coming days. I have a drug trial and a conference to write about! Stay tuned!

Robyn Dunphy3 Comments